Apollo Ward

We are an 8 bedded unit providing High Dependency Care to children and young people at Chelsea and Westminster Hospital.

We have dedicated staff for the unit and our team includes nurses, medical and surgical teams, pain team, play specialists and many more who will answer any questions you may have.

Who will look after me?

Each patient on Apollo Ward will have a dedicated nurse to care for them and a nurse in charge who co-ordinates the shift. The unit is led by the Unit Sister. Your dedicated nurse is responsible for looking after your child with the support of his/her colleagues throughout the shift. Nursing shift patterns run from 8am-8.30pm and 8pm-8.30am. Please ask a member of the team if you have any questions.

There is a morning ward round, consisting of consultants, registrars and senior house officers who will  review the treatment and care of each patient. There is also an evening ward round.

Other members of staff

Other staff who you may meet on the ward include physiotherapists, dieticians, play specialists, ward pharmacists, housekeepers, student nurses, medical students and ward clerks.

Meals

Meals for patients are available free of charge, a member of catering staff will usually take orders in the morning.

Mothers that are breastfeeding and are visiting their child on the ward are also entitled to free meals. There is a breakfast trolley situated opposite the nurse’s base from 7.30am-10am for patients. Lunch is served at 12pm and dinner is served at 5pm.

Parent’s Room

A Parent’s Room is located on the unit; please feel free to use the room and facilities.

Car Parking

Car parking is provided to parents/guardians of patients on Apollo Ward free of charge. If you are transferred to another ward please be aware that you will have to pay for parking. Please ask your nurse for a form.

Play Team

We have a play specialist team who offer toys and games to patients as well as distraction therapy during interventions. There is also a play room located on the ward.

Televisions

The television service is available free of charge from 7am–7pm. After this time you are able to purchase a TV card from main reception for further viewing.

Please use the provided headphones from 7pm.

Visiting

There are no visiting restrictions for parents/carers. We encourage one parent to stay overnight with their child. A bed will be provided. We ask that other family members/friends visit within 8am-8pm, with no more than two visitors at one time.

School Room

The School Room is located on the 1^st floor. We understand that not all patients will be well enough to attend so activities can be brought to the ward. 

Art Therapy 

Art Therapy is a form of psychotherapy. It is suitable for working on a wide range of issues related to illness and hospital admission helping contain and manage some of the feelings and giving a non-judgmental space where things can be expressed.

Art therapy is a flexible, adaptable form of therapy that does not require any previous experience in art. It has been successfully accessed by many young people on the wards since 2006.

What young people and families say about Art Therapy

“Art Therapy gave him an outlet for his emotions, and we have been helped and reassured by this input. He looked forward to his sessions and the routine was settling for him. The sessions helped both our son and us and we think any child would benefit from such support.” Parent of 4 year old

“I got time to express my feelings, I really enjoyed it. I had time to focus on myself and talk to someone, draw and write what was on my mind.” 13 year old

"I like art therapy because it’s fun and gives me a chance to be messy and talk about things.” 10 year old

"It helped me with my feelings a lot, painting made me happy.” 6 year old

“Art therapy is really amazing and helps you think about your thoughts. It helps because it lets your feelings out.” 14 year old

“I think hospital admissions can be lonely and medical staff daunting. My daughter really enjoyed Art Therapy and seemed relaxed after doing it.” Parent of 8 year old

Supporting the wellbeing of young people and families

Art Therapy aims to support young people and families while in hospital.

Providing a space to communicate feelings verbally and non-verbally and offer an emotional outlet during admission.

Further information

• British Association of Art Therapists
• Health and Care Professionals Council

Introduction 

Bell's palsy is a condition that causes temporary weakness or paralysis of the muscles in one side of the face. It is the most common cause of facial paralysis.

Other causes of facial paralysis include:

• congenital facial palsy – children born with facial weakness
• injury to the facial nerve in an accident – such as a cut to the cheek or skull base fracture
• injury from surgery – which is most common during surgery of the parotid gland and neck.

What are the symptoms?

The symptoms of Bell’s palsy vary from person to person. The weakness on one side of the face can be described as either:

• partial palsy, which is mild muscle weakness
• complete palsy, which is no movement at all (paralysis) – although this is very rare.

Bell's palsy can also affect the eyelid and mouth, making it difficult to close and open them. In rare cases, it can affect both sides of a person’s face.

Why does it happen?

Bell's palsy is believed to occur when the nerve that controls the muscles in your face becomes compressed.

The exact cause is unknown, although it's thought to be because the facial nerve becomes inflamed, possibly due to a viral infection. 

The herpes virus is thought to be the most common cause but other viruses may also be responsible.

Who is affected?

Bell's palsy is a rare condition that affects about one in 5,000 people a year. It's most common in people aged 15-60, but people outside this age group can also suffer from the condition. Both men and women are affected equally.

Treating Bell's palsy

Around seven out of 10 people with Bell's palsy make a complete recovery, with or without treatment.

Most people notice an improvement in their symptoms after about two to three weeks but a complete recovery can take up to nine months. The recovery time varies from person to person and will depend on the amount of nerve damage.

Prednisolone, a type of corticosteroid, is used to reduce the swelling of the facial nerve.

Eye drops may be required to prevent problems if you are unable to close your eye. Tape may also be used to close the eye while sleeping.

Complications

Around three in 10 people with Bell’s palsy will continue to experience weakness in their facial muscles, and two in 10 will be left with a more serious long-term problem.

Complications include:

• persistent facial weakness
• eye problems
• difficulty with speech, eating and drinking
• reduced sense of taste
• facial muscle twitching

Bell's palsy may reoccur in up to 14% of people, especially if there is a family history of the condition.

Central Line safety advice for nurses and parents

A Hickman/ central line is a thin, flexible tube which is inserted into a large vein in your child’s neck. The other end of the tube is tunnelled under your child’s skin and comes out (somewhere on the chest). This end of the line will be held in place by small stitches for as long as your child needs the line (it can be left in for weeks or months). The line will be looped and covered with a clear dressing, with small children steri strips are also used for extra security.

Please check that your child’s line is securely looped underneath the dressing. This will reduce the risk of accidental dislodgement.

You child can be sent home with a central line.

You will be provided with a safety pack containing the following items:

• 1 x pack sterile gauze
• 1 x large IV 3000 dressing
• 1 x small IV 3000
• 2 x blue clamps
• 2 x bionectors
• 4 x sani cloth CHG 2%
• 1 x roll transpore

The safety kit should accompany the child at all times, anyone caring for the child must be familiar with the pack and must have received safety training.

Please note that if your child develops a temperature of 38 degrees and above you should contact your local hospital immediately as your child could have a line infection or sepsis. 

If worried or unsure please ring 999 and ask for an ambulance to take you to your local hospital.

Hickman/central line safety advice including daily care and observations

Infection

• Observe the exit site and neck wound for any signs of infection
• Redness
• Swelling
• Pain
• Heat
• Discharge i.e. blood/pus
• Should any of the above occur please take your child to their local hospital or call your community nurse for assessment.

If infection is the case:

• Your child will require an assessment, swabs and blood specimens to be taken
• If the central line is infected then it will need prompt treatment
• If the dressing is soiled with blood or there is wetness under the dressing it will need to be changed as this increases the risk of infection
• If the dressing remains intact and there is no oozing then the dressing needs to be changed once a week by the children’s’ community team.

Keeping the Hickman/central line dry

• The end of the central line can be taped out of the way when your child has a bath, please ensure that the end does not get submerged in the bath. Some families find it useful to place the bung in a plastic bag, using cling film or a sandwich bag and also tap the line(s) over the shoulders during bath time.
• The end should not be dangling down by the nappy/groin area, if they do get soiled, the bionector (caps) at the end of the line will need to be changed and the line should be cleaned thoroughly.
• If the bionector (caps) falls off, you must wash your hands thoroughly, clean the end of the cental line using a sani cloth CHG 2% for 30 seconds, allow to dry for 30 seconds and replace the bionector, ensuring that you do not touch the key parts (end of central line and the connection of the bionector. Never put the old bionector back on.

Breakage

There are two blue clamps in the safety pack that you should carry with you at all times. If the central line breaks, is accidentally cut or there is a hole in it you should;

• Wrap a piece of occlusive dressing (e.g IV 3000) around the break, to ensure the line does not get dirty
• Then wrap a piece of gauze around it to make the clamps fit more securely this also prevents damage that the clamps can do to the central line.
• Use the  two clamps provided to clamp one must above the cut/break and one closer to the chest.

Please take your child to your local hospital who will check that the central line has been clamped properly and will make arrangements to repair the line. Call an ambulance if unsure.

If you do not have the clamps with you, you should bend the line over and hold with your fingers and ring for an ambulance.

Daily checks

Check that your child’s line is securely looped underneath the dressing.  This will reduce the risk of accidental dislodgement.

Check that the white clamp(s) are closed always at the thick partof the line.  This will reduce the risk of blood loss if the caps were to fall off or the line broke near the hub. If you find that the clamps are open, you should close them and ask the community nurse to come and flush the line, to prevent it getting blocked.

What is a fractured clavicle?

A fractured clavicle is a break in the collar bone. This is a very common fracture in children. 

What are the common causes of a fractured clavicle?

It commonly happens after a falling onto an outstretched arm but can also occur after a direct blow to the chest or shoulder or from falling on to the shoulder. 

What are the symptoms?

Your child may complain of pain in the shoulder/chest region. They may have an obvious bump over the collar bone.

Their shoulder may look more raised on the injured side compared to their shoulder on the opposite side. Younger children may be reluctant to use their arm.  

How is it diagnosed?

The story of how it occurred and an examination of your child’s arm will help us diagnose a fractured clavicle.

An X-ray of the clavicle is performed so we will be able to see where the bone is broken and if there it is a more serious injury.

How is it treated?

This type of fracture heals well. The only treatments that are generally required are pain killers and a sling. If your child seems to be in pain they should be given simple painkillers such as paracetamol or ibuprofen.

Once the examination and x-ray have been carried out most children will be placed in a sling. Rarely does this type of fracture require an operation.

We would expect the collar bone to be painful for 4-6 weeks and your child may find it more comfortable to sleep sitting upright for a few days after the injury.

The shoulder and arm can be moved out of the sling as comfort allows. This will usually be about 2 weeks after the injury but can be sooner if comfortable.

The ‘bump’ over the fracture is quite normal and is produced by healing bone. It may take up to one year to disappear. If your child is older than ten years a small bump may remain.

Your child may return to activities as soon as comfortable, but should avoid swimming and contact sports (such as football, rugby and basketball) for six weeks. 

Are there any possible complications?

There is generally an excellent return to normal function after a clavicle fracture. It is extremely rare to develop complications from a clavicle fractures.

If you are still experiencing significant symptoms after two to three months, please contact your GP or us for further advice. 

Introduction

Conjunctivitis is a common condition that causes redness and inflammation of the thin layer of tissue that covers the front of the eye (the conjunctiva).

People often refer to conjunctivitis as red eye.

Other symptoms of conjunctivitis include itchiness and watering of the eyes, and sometimes a sticky coating on the eyelashes (if it's caused by an allergy).

Conjunctivitis can affect one eye at first, but usually affects both eyes after a few hours.

What causes conjunctivitis?

The conjunctiva can become inflamed as result of:

• A bacterial or viral infection - this is known as infective conjunctivitis
• An allergic reaction to a substance such as pollen or dust mites - this is known as allergic conjunctivitis
• The eye coming into contact with substances that can irritate the conjunctiva, such as chlorinated water or shampoo, or a loose eyelash rubbing against the eye - this is known as irritant conjunctivitis

Treating conjunctivitis

Conjunctivitis often doesn't require treatment as the symptoms usually clear up within a couple of weeks. If treatment is necessary, the type of treatment will depend on the cause. In severe cases, antibiotic eye drops can be used to clear the infection.

Irritant conjunctivitis will clear up as soon as whatever is causing it is removed.

Allergic conjunctivitis can usually be treated with anti-allergy medications such as antihistamines. If possible, avoid the substance that triggered the allergy.

It's best not to wear contact lenses until the symptoms have cleared up. Any sticky or crusty coating on the eyelids or lashes can be cleansed with cotton wool and water.

Washing your hands regularly and avoiding sharing pillows or towels will help prevent it spreading.

See your GP immediately if you have:

• Eye pain
• Sensitivity to light (photophobia)
• Disturbed vision
• Intense redness in one or both of your eyes
• A newborn baby with conjunctivitis

School

Public Health England advises that you do not need to stay away from school if your child has conjunctivitis, unless you are feeling particularly unwell.

If there are a number of cases of conjunctivitis at one school or nursery, you may be advised to keep your child away from the school until their infection has cleared up.

Complications

Conjunctivitis can be a frustrating condition - especially allergic conjunctivitis - but in most cases it doesn't pose a serious threat to health.

Complications of conjunctivitis are rare but when they do occur they can be serious and include:

• A severe case of allergic conjunctivitis can lead to scarring in the eye
• In cases of infective conjunctivitis, the infection can spread to other areas of the body, triggering more serious secondary infections such as meningitis (an infection of the outer layer of the brain). 

What is Gastro-Oesophageal Reflux (GOR)?

All babies regurgitate/posset/ vomit small amounts of milk after feeding. This is because food (from the stomach) comes up through the oesophagus (gullet) into the mouth. GOR happens because the muscles at the lower end of the oesophagus are too relaxed and allow milk to come back into the oesophagus from the stomach. About 40% (4 out of 10) of babies have Gastro-Oesophageal Reflux.

The doctors may diagnose this condition if:

• Vomiting is particularly frequent
• The child becomes particularly distressed during or after feeds or when vomiting.
• Your baby is not gaining weight.

It is important to realise that GOR is not a disease. Although it is messy and upsetting, it is quite normal as your baby grows older, the muscle should open only when he or she swallows, and remain tightly closed at all other times to prevent stomach contents escaping. This is why most babies grow out of reflux by 18 months.

GOR does not mean that your child is sick. Most children grow out of it as their oesophagus and stomach develop.

What can I do to help my child?

There are steps you can take to prevent GOR.

• Wind your baby regularly during feeds.
• Do not over-feed your baby (ask your health visitor if you are unsure how much to feed)
• If your baby is bottle fed, feed them upright and try using a smaller teat so that your baby gets their milk more slowly.
• Hold your baby upright for a period after feeding.

Despite all your best efforts, some babies will continue to vomit. This is not a cause for alarm.

When should I see my GP?

If reflux happens often, or your baby is violently sick, appears to be in pain or you’re worried for any other reason, talk to your health visitor or GP – especially if they have any of the following symptoms:

• Coughing, gagging or trouble swallowing
• Frequent projectile vomiting
• Persistent crying and being irritable
• Wheezing
• Bad breath
• Difficulty sleeping
• Arching their back during or after a feed
• Drawing their legs up to their tummy after feeding
• Refusing a feed even though they're happy to suck on a dummy or similar
• Not gaining much weight, or losing weight.

An allergy 

If you think your baby is having a reaction to infant formula or cows' milk, tell your GP. Some of the signs are a skin rash, vomiting and diarrhoea.

Your GP can prescribe special formula feeds called "extensively hydrolysed protein feeds" (see When should I see my GP?).

If your baby is allergic to cows' milk, eliminating it from their diet for two to three weeks should reduce their vomiting considerably. If you breastfeed, you'll need to exclude cows' milk from your own diet.

Some infant formula is labelled as hypoallergenic, but this is not suitable for babies with a diagnosed cows' milk allergy.

Always talk to your GP before using hypoallergenic or soya-based infant formula, as babies who are allergic to cow's milk may also be allergic to soya.

If your baby continues to vomit despite cutting out cows' milk, it's unlikely that an allergy is the problem.

Does my baby need any tests?

Usually, the doctor is able to diagnose GOR from the information you give. If the doctor is in any doubt about the diagnosis, they may recommend tests, but this is not usually necessary.

If your baby is diagnosed with GOR, your health visitor will make sure that they are gaining weight at their routine checks. If they have any concerns, they will tell you. It is not usually necessary for you to keep coming back to hospital for follow-up appointments, unless your health visitor or GP are concerned.

Are there any long term complications?

Most children with GOR grow out of it within the first six months, and it is unusual for them to still have problems after their first birthday. As long as your child is gaining weight, it is extremely unlikely that they will come to any harm from GOR.

Where can I get more information?

Your health visitor will be able to give you support, and answer your questions.

What is Henoch-Schonlein Purpura (HSP)?

Henoch-Schonlein purpura causes blood vessels to become inflamed (swollen and irritated) the blood vessels involved are usually the small ones in the skin causing a rash that looks a bit like bruises. This type of rash is called purpura.

Other blood vessels that may be involved are the ones in the kidney, causing blood in the urine, and the ones in the intestines, causing stomach pains.

Why does it happen?

The cause of HSP is unknown. Sometimes infections, like colds, can trigger HSP. Other possible triggers are insect bites, medicines and vaccinations. It usually affects children between 2-10 years of age but it can happen to anyone. HSP is not contagious and there is no way to prevent it.

Which are the signs and symptoms?

Skin rash: This looks like small bruises or small reddish-purple spots. It is usually on the buttocks, on the legs and around the elbows. The skin rash may look very dramatic but is not dangerous.

Swelling: In many children with HSP the skin over hands and feet becomes swollen and tender. In boys this can also involve the scrotum.

Inflamed joints: Joints, most commonly knees and ankles, can become swollen and tender.

Blood in the urine: This can sometimes be seen with the naked eye (macroscopic) and sometimes only discovered when the urine is analysed with a dipstick (microscopic).

Serious kidney problems can occur but are fortunately rare.

Stomach pain: This is common and can sometimes be severe. In rare cases an abnormal folding of the bowel can occur, blocking the bowel. This is an emergency that may need surgery.

What is the treatment?

There is no specific treatment for HSP. Medicines are used only help your child feel more comfortable.

Fortunately almost all children with HSP get better without any treatment.

Painkillers like paracetamol/calpol or ibuprofen can help with joint pain. If stomach or joint pain is severe a drug called prednisolone can be used. Prednisolone may also be used along with other medicines if there are any signs of kidney damage.

About 1 in 3 children who have had HSP will get it once again in the first 6 months.

What follow up will be needed?

Your doctor will want to check urine samples and blood pressure several times to check for kidney problems. These checks should go on for at least 6 months. Your child should receive an appointment in the Paediatric Outpatient Clinic within 1 month from when the HSP started. Your GP may also carry out some of these checks and may prescribe you urine dipsticks that can be used at home.

The long-term follow-up for urine and blood pressure checks are very important.

When to come back to A&E?

If your child gets increasing stomach pains, vomits, blood in the stool (poo) or in the urine, worsening swelling or pains bring them back to the A&E department.

Introduction

The port is especially susceptible to infection during the first two weeks after an operation.

Keep both incisions (on the neck and by the port) dry for the first week after the operation. After one week your child may have a bath, and if steri-strips are still present they can be removed.

Observe the incisions, by the port and on the neck for signs of infection:

• Redness
• Swelling
• Discharge ie blood or pus, from either incision
• Pain

An infection of the skin over the port needs to be treated promptly as it may progress to a line infection. Contact your local hospital / paediatric community nurse if there are any signs of infection.

• Do not go swimming when the port is accessed
• Always check the port daily for signs of infection

The most important part of caring for a child with a very low neutrophil count is prompt investigation and treatment if they become unwell or develop a fever. For immunosuppressed children- if your child seems unwell and feels hot whilst neutropenic, take their temperature. One possible cause of a temperature is an infection inside the port.

If their temperature is raised to 38.5°C once, or is 38.0°C for one hour, phone the doctor at your local hospital. Your child will need to be admitted to hospital, so you need to take them there promptly, for examination, and to have blood cultures taken. A course of intravenous antibiotics will be commenced.

Ensure you are given some Ametop gel (anaesthetic gel) to take home with you.

If you have a community nurse you may need some supplies to take home with you. We will check with your local that they have some needles, if they don't, we will give you some to take with you.

When someone is removing the needle the port will need supporting so as not to pull the port away from the muscle that it is sutured to.

Introduction 

We are a dedicated 12 bed unit for young people and adolescents aged 11–16 years, at Chelsea and Westminster Hospital. We take admissions from A&E and transfers from other hospitals.

Nursing and support workers

Jupiter has a team of nurses and healthcare assistants who will look after your child, led by the Ward Sister. Day shifts are 8am–8:30pm and night shifts 8pm–8:30am.

Boys and girls are different!

For this reason we have separate areas for boys and girls to sleep in. We also have separate bathrooms, and a shower room. On occasion, we may have to change the bays around if we have too many boys or girls.

The lights are switched on at 8am and your child’s nurse will come round to wake them up. At night we expect all of our patients to be in bed no later than 10pm. The main lights will be switched off between 9–10pm. Patients may leave their bedside light on.

Meals

Breakfast is served from a trolley outside the kitchen. Patients can help themselves to toast and cereal. Their nurse will be able to help them with meals if needed.

Lunch and supper is chosen from a menu that will be brought round each morning. If you do wish to bring in any of your own food, then ask the nurse for a label and it may be placed in the fridge in the parents’ room.

• Breakfast: 7:30–9am
• Lunch: 12 noon–1pm 
• Dinner: 5–6pm

Water jugs are filled and refreshed twice a day. There is also a water fountain and squash on the ward. The nurse will let you and your child know if they are not allowed to eat or drink. 

School

If children are well enough, we expect all young people to attend the hospital school, which is on the first floor. If they cannot attend then the teachers can bring work to the bed side. If a child is with us for a while, the school will liaise with their own school for work to be brought in for them. 

Please note that we inform school nurses of all admissions to hospital.

• School times: Mon–Fri, 10am–12 noon and 1:30–3:30pm

Parents/carers

The ward tries to promote independence with young people, and for this reason we do not encourage parents to be resident overnight. As a ward, we are provided with limited parents beds but we do have use of the patient hotel should you wish to stay.  

There is a parent’s room on the ward, with tea and coffee facilities. If you put anything in the fridge, please ensure it is labelled; otherwise it may be thrown away.

Visitors

Please, no more than two visitors at a time. Parents may visit any time between 8am–10pm.

As we expect all children to be in school, we do not encourage other visitors until after 3:30pm, especially if school friends are coming to visit. Any visitor under the age of 16 years MUST be accompanied by an adult at all times, otherwise they will not be allowed on the ward. All other visitors must leave by 8pm.

TV/phone

The television service is available free of charge from 7am–7pm. After this time, you are able to purchase a TV card from the main reception for further viewing.

We ask patients to respect their fellow patients on the ward so if they are watching TV or listening to music we encourage them to ask for some headphones.

If you or your child has a mobile phone, please have it on silent while on the ward.

Youth worker

We have a dedicated youth worker for the ward who works three days a week on Mondays, Wednesdays, Fridays and occasional Saturdays. The role of the youth worker is to provide age appropriate activities and support adolescents emotionally during their time in the hospital by building positive relationships with them. We also have a common room for Jupiter patients to use should they wish to play games or just have some time away from their bed space.

Youth forum

The youth forum called HYPE (Hospital Young People’s Executive) gives former and current patients aged between 12 to 17 an opportunity to meet every 6 to 8 weeks to have their say on the services they receive. Young people can also share their hospital experiences to help the staff understand what young people want and need.

The Youth Forum have undertaken various projects so far, such as taking an in house tours of the catering department in order to change the adolescents food menu, going on local trips, designing posters, and much more.

Going home

Medicines

If your child requires medication to take home your doctor will prescribed it and the pharmacy team will arrange for it to arrive to the ward. At times this process can take a few hours to safely arrange, therefore please be patient and bear in mind your nurse will be following up the progress on this on your behalf.

Car parking

We provide reduced car parking rates for parents of children who are inpatients to £10 for 24 hours. Please ask your nurse for a voucher.

Introduction 

Kawasaki disease is a rare condition that mainly affects children under the age of five. It is also known as mucocutaneous lymph node syndrome. The characteristic symptoms are a high temperature that lasts for more than five days, with:

• Rash
• Swollen glands in the neck
• Dry, cracked lips
• Red fingers or toes
• Red eyes

By weeks 2–4, symptoms will become less severe but may last longer. At this stage, the affected child may have peeling skin on their fingers and toes.

See your GP if your child is unwell with the above symptoms. The symptoms of Kawasaki disease can be similar to those of other conditions that cause a fever in children.

Kawasaki disease cannot be prevented but if it is diagnosed and treated promptly, most children will make a full recovery within six to eight weeks.

It is thought that Kawasaki disease is caused by an infection, although the exact cause is not clear.

Treating Kawasaki disease

Kawasaki disease is usually treated in hospital because it can sometimes lead to serious complications

It is best if treatment begins as soon as possible, ideally within 10 days of the symptoms starting. The sooner treatment starts, the quicker the recovery time and the less risk there is of complications developing. 

Aspirin and intravenous immunoglobulin (a solution of antibodies) are the two main medicines used to treat Kawasaki disease.

Complications of Kawasaki disease

Kawasaki disease causes the blood vessels to become inflamed and swollen, which can lead to complications in the coronary arteries (the blood vessels that supply blood to the heart).

Up to 5% of children with Kawasaki disease experience complications with their heart. In about 1% of cases, the complications can be fatal.

Because of this, the condition has become the leading cause of acquired heart disease (when the heart's blood supply is blocked or interrupted) in the UK.

Who is affected?

In the UK around eight in every 100,000 children develop Kawasaki disease each year.

Research carried out in England from 1998 to 2003 found that 72% of children with Kawasaki disease were under five years old. The condition was also shown to be one-and-a-half times more common in boys than in girls.

What is a lumbar puncture?

A lumbar puncture, also known as a LP or spinal tap, is a test where a doctor uses needle to collect fluid from your child’s lower back. This fluid is called cerebrospinal fluid, or CSF, which surrounds the brain and spinal cord. A small amount of CSF is collected and sent to the laboratory for testing.

Why does my child need a lumbar puncture?

A lumbar puncture is needed to test the fluid around the brain and spinal fluid. This is most commonly to look for infection. In this case, the test is done to find out if a child has an infection called meningitis, which is a serious infection around the brain.

It is important for your child to have the lumbar puncture as it is the only way to know for sure if they have meningitis. Early diagnosis of meningitis can greatly improve long term outcomes. Having a lumbar puncture doesn’t necessarily mean that your child has meningitis but is an important test to rule this serious infection out.

A lumbar puncture may sometimes be carried out to look to for rarer conditions, often involving the neurology team.

How is a lumbar puncture carried out?

Younger children will be placed on their side with their knees tucked into their chest or curled up into a ball and will be held in this position by an assistant. Older children may be asked to sit on the edge of the bed, leaning forward hugging a pillow.

The back is carefully cleaned and the surrounding parts of the back draped with a sterile gown. The doctor puts a needle into the spaces between the vertebrae (bones of the spine) below the level of the spinal cord. The fluid will be collected into special containers and will be sent to the laboratory for testing.

The whole procedure may take up to 45 minutes, although much of this is preparation time. We generally advise parents to step outside during the procedure.

Does it hurt?

It is an uncomfortable and sometimes painful test. Your child will be held still, and babies and small children do not like this and will often cry.

Depending on the age of your child we can help to numb the skin with some cream, or with an injection, or we may be able to give your child some medicine to make them feel calmer and less scared.

Is it dangerous?

A lumbar puncture is a very safe test and it is unusual for something to go wrong. Sometimes we are not able to get fluid and may have to try more than once. A small number of children may have headache or backache for a day or two after the test. The risk of any serious complications, including bleeding, infection or damage to nerves is extremely small.

It understandable to feel uneasy or anxious but it is important to know that a lumbar puncture is a very safe and common test, and complications are rare.

Care after the procedure

A plaster or dressing will be placed on your child’s back which can be taken off the next day or left to fall off by itself. If they have a headache or backache painkillers can be given. Your child will be encouraged to lie flat for about an hour afterwards. When he or she is fully awake, you should encourage him or her to drink normally.

Getting the results

The fluid is sent to the laboratory for testing.

If the lumbar puncture was carried out to look for infection then some results will be available within 4-6 hours while others, including trying to identify the specific bacteria, will usually take 48 hours, and sometimes up to 5 days. 

If the lumbar puncture was carried out for any other reason it is likely that some results will be available in 4-6 hours, but the most important tests may take days, or in some cases weeks. The team performing the test should be able to advise you when to expect to hear the results.

The doctors will give you the results when they become available.

The main function of the kidneys is to clean blood by filtering out excess water, salt and waste products from food. However when the kidneys have damaged filters protein can leak into the urine. As a result there is not enough protein in the blood to soak up the water and therefore the water moves into the body tissues causing swelling and a greater chance of catching infections.

It can affect people of any age, but is often first seen in children aged between two and five years.

Children with nephrotic syndrome have times when their symptoms are under control (remission), followed by times when symptoms return (relapses). Most will relapse less frequently as they get older, eventually "growing out of it" by their late teens.

Symptoms can usually be controlled by medication. Most children with nephrotic syndrome respond well to steroids and aren't at risk of kidney failure.

However, a small number of children have congenital (inherited) nephrotic syndrome and usually do less well.

What problems can it cause?

Some of the main symptoms associated with nephrotic syndrome are:

Swelling

The low level of protein in the blood reduces the movement of water from surrounding tissues back into the blood vessels, leading to swelling (oedema). Swelling is usually first noticed around the eyes, then around the lower legs and rest of the body.

Infections

Antibodies are a specialised group of proteins in the blood that help fight infection. When these are lost, children are much more likely to get infections and frequently experience fatigue, poor appetite and weakness.

Urine changes

Occasionally, the high levels of protein being passed into the urine can cause it to become "frothy". Some children with nephrotic syndrome may also pass less urine than usual during relapses.

Blood clots

Important proteins that help prevent the blood from clotting can be passed out in the urine of children with nephrotic syndrome. This can increase their risk of potentially serious blood clots.

Diagnosis

Diagnosis is made with a simple urine test and blood test. In very few cases a kidney biopsy is required.

Symptoms:

• High levels of protein in urine.
• Low levels of protein in the blood.
• Less frequent urination.
• Weight gain from excess water.
• Oedema (swelling) resulting from build-up of salt and water.
• Vomiting and diarrhoea due to abdomen swelling.
• Skin breakdown during periods of oedema – very pale skin. 

Managing nephrotic syndrome

The main treatment for nephrotic syndrome is steroids, but additional treatments may also be used if a child develops significant side effects.

Steroids

When they are first diagnosed, your child will normally be prescribed at least a four week course of the steroid medicine prednisolone. This will need to be taken every day, followed by another four weeks where the medication is taken every other day. This stops protein leaking from your child's kidneys into their urine.

When prednisolone is prescribed for short periods, there are usually no serious or long-lasting side effects, although some children may experience increased appetite, weight gain, swollen cheeks and mood changes.

Most children respond well to treatment with prednisolone, with the protein often disappearing from their urine and the swelling going down within a few weeks. This period is known as remission.

Diuretics

Diuretics, or "water tablets", may also be given to help reduce the fluid build-up. They work by increasing the amount of urine produced.

Penicillin

Penicillin is an antibiotic and may be prescribed during relapses to reduce the chances of an infection.

Dietary changes

To prevent further water retention and oedema, you may be advised to reduce the amount of salt in your child's diet. This means avoiding processed foods and not adding salt to what you eat.

Vaccinations

Children with nephrotic syndrome are advised to have the pneumococcal vaccine. Some children may also be recommended the varicella (chickenpox) vaccination between relapses.

Live vaccines (such as MMR, chickenpox and BCG) should not be given while your child is taking medication to control their symptoms.

Caring for your child at home

If your child has been diagnosed with nephrotic syndrome, you will need to monitor their condition on a daily basis to check for signs of relapses.

You will need to use a dipstick to test your child's urine for protein the first time they urinate each day. The result for each day will need to be written down in a diary for your doctor to review during your outpatient appointments.

You should also note down the dose of any medication they are taking and any other comments, such as whether your child is feeling unwell.

If the dipstick shows +++ or more of protein in the urine for three days in a row, this means your child is having a relapse. If this happens, you either need to follow the advice given about starting steroids or contact your doctor.

You should seek immediate medical advice if:

• Your child has come into contact with someone who has chickenpox or measles
• Your child is puffy, unwell or has a fever
• Your child has diarrhoea and is vomiting

Support

There is help and support available from various medical professionals involved in your child’s care and treatment.

Introduction 

Neptune Ward is a 16-bed medical ward at Chelsea and Westminster Hospital. We take admissions from A&E, outpatients and transfers from other hospitals.

We are also a shared care ward for children receiving oncology treatment. We care for children and from birth to 16 years of age. We have a large team of nurses, doctors and specialists who are committed to providing a high standard of care to your child, working in partnership with families and carers.

Nursing and support workers

Neptune Ward has a team of nursing staff and health care assistants who will look after your child, led by the ward sister.

Day shifts are 8am–8.30pm and night shifts are 8pm–8.30am. Other members of our team also include play specialists, domestics and administrative staff.

Medical

Your child’s care will be led by a consultant who has a team of doctors working with them. You will be seen by a member of the medical team on admission and by a consultant within 24 hours of your child’s admission to the ward.

A consultant-led medical ward round is carried out daily from 9am–12pm. Other specialist teams may visit at different times. 

Visiting times

Visiting times are 8am–8pm, parents can visit outside these times.

We do have limited space and in order to be respectful of other patients we can only have two visitors per bedside at one time. If you are allocated to a side room this will be for a medical reason and visiting may need to be restricted. Please ask your child’s nurse if you are unsure.

Staying overnight

We recognise the importance of family-centred care and strive to achieve a safe and comforting environment for the child. We therefore welcome one parent or guardian to stay alongside your child overnight and when possible we will provide a camp bed. We do ask that these are folded away in the morning by 9:30am in order to keep a clean, tidy and safe bed space.

Overnight we would like the children to have as good a night’s sleep as possible to aid their recovery. We will therefore endeavour to keep noise to a minimum, however sometimes monitoring and machinery is necessary. Bedside lamps or dimmed overhead lights will need to remain on in order to ensure your child can be assessed at all times to maintain their safety.

Parents room

This is for parents only. Please use this room as a children-free zone away from the patient bedside to allow yourselves a bit of space.

Please feel free to bring in your own food items or home cooking and make the most of the facilities. We ask that the area remains as clean and tidy as when you found it, ready for the next parent. Please label all food in the fridge with your child’s name and the date in order to maintain a safe food environment—food will discard if unlabelled.

Mealtimes

Breakfast is served from a trolley outside the kitchen. You can help yourself to toast and cereal. Your nurse will be able to help you if needed.

Lunch and supper is chosen from a menu that will be brought round to you each morning, for you to make your own selection.

• Breakfast: 7:30–9am
• Lunch: 12 noon–1pm
• Dinner: 5–6pm

Water jugs are filled and refreshed twice a day. There is also a water fountain and squash available on the ward.

Playroom

We have a playroom which is open from 9am. It is a safe area for children to explore and play. We have play specialists and play assistants who can provide distraction techniques during procedures, play interaction and support, and one-to-one play with your child. All children and siblings must be supervised at all times when in the play room.

School

If well enough, we expect all young children and adolescents to attend the hospital school. It is located on the 1st Floor of the hospital. If your child cannot attend the school, teachers can bring work to your bedside.

If your child is in hospital for a while, the school will liaise with his/her own school for work to be brought in.

Please note that we inform school nurses of all admissions to hospital.

School times are (Monday to Friday): 10am–12pm and 1:30–3:30pm.

Televisions

The television service is available free of charge from 7am–7pm. After this time you are able to purchase a TV card from the main reception for further viewing.

We encourage headphones to be worn whenever possible in order to be respectful of noise to those around you.

Going home medicines

If your child requires any medication to have at home your doctor will prescribe it and the pharmacy team will arrange for it to arrive on Neptune Ward.

At times this process can take a few hours to safely arrange, therefore please be patient. Your nurse will keep you up-to-date with any progress.

Car parking

We provide reduced car parking rates for parents of children who are inpatients (£10 for 24 hours). Please ask your nurse for a voucher which you can hand in at main reception with your car park ticket when you leave.

Feedback

We welcome all feedback and encourage you to complete the children’s feedback survey available at the ward desk. Please ask your nurse or the receptionist for the form 

Welcome to the Paediatric Assessment Unit (PAU)

What is PAU?

The PAU is an emergency assessment unit for children and young people where they can referred by their GP, Midwife, Health Visitor, Urgent Care Centre (UCC) and/or the Paediatric Emergency Department (PED).

The Unit provides a rapid assessment of children and young people and aims where clinically possible to assess, treat and discharge home in a short space of time. Children and young people are admitted under the care of a consultant paediatrician who will ensure that the appropriate assessment and care is given.

What to expect during your visit

The nursing staff on PAU aim to complete an initial assessment of your child or young person within 15 minutes of arrival to the unit. At times this may not be possible if for example a lot of people have arrived in a short space of time.

If you are worried your child has deteriorated please inform the nurse.

On assessment you will be asked lots of questions to ensure you are seen in a reasonable amount of time. This often means you are not seen in the order you arrives as other children may need to be seen before you if their condition is more serious.

You will be seen by a member of the medical team usually within one hour of arrival.  At this point any tests, investigations or treatment will be started.

The results of most tests we carry out will be available within a few hours and will help the medical and nursing staff make decisions with you about what care is needed.

You will also require a period of observation before being discharged home. The PAU is not an inpatient ward, although sometimes children will stay overnight for a longer period of assessment. The PAU is a busy environment. For this reason we ask that you supervise your child at all times, especially in the play and waiting area.

If we feel you will not be able to be assessed and treated quickly or you do not respond to initial treatment then you may need to be admitted to a Paediatric Ward for ongoing care.

Going home from PAU

The PAU is open 24 hours a day, 7 days a week, and treats a large number of children. Therefore it is essential once your treatment is complete you are able to leave the department and continue the care of your child or young person at home.

If you are unable to arrange your own transport home, please ensure that the staff are aware of this as early as possible to allow us time to assist your with this if required.

Once you leave the PAU you will be given a discharge information leaflet. This will have a brief summary of your visit including why you attended, what treatment has been given and any further advice or treatment we would like you to continue at home.

The discharge leaflet also gives advice on what to look out for in your child once at home including any signs that your child is becoming more unwell.

Some children will need to be seen again by the paediatric team following discharge. For this purpose you may be asked to see your GP or receive and appointment to see a paediatrician in our Rapid Access Clinic (RAC).

Some children and young people will be asked to attend the PAU or RAC for on-going treatment such as dressings or the administration of medications.

All children and young people who attend our hospital automatically have a referral made to their Health Visitor or School Nurse and their GP. This information is usually made available for them within 48 hours of your visit.

What is a PICC Line?

PICC stands for “Peripherally Inserted Central Catheter”. It is a silicone rubber tube, which is placed in the antecubital fossa of the arm (the elbow crease) with the tip of the catheter lying in the superior vena cava, the large vein at the entrance to the right atrium of the heart. It is held in place by two small stitches in the skin. Their use appears to be associated with a lower rate of infection.

This may be due to the fact that the antecubital fossa is less colonised with normal skin “bugs” and is less oily and moist than the chest and neck.

For smaller children or babies the same line is used but will be placed on the chest, this is called an uncuffed skin tunneled central venous catheter. It is tunneled under the skin of the chest wall to a vein in the neck. From there it is threaded through a large vein into the right atrium of the heart.

The PICC can stay in position for many months without causing any problems.There is a special tip at the end of the catheter called a Groshong™ valve.

This is a 3-position, pressure sensitive valve. It allows fluid infusion and blood aspiration. When the PICC is not in use, the valve maintains catheter patency by restricting the backflow of blood and preventing air embolism by remaining closed. This means there is no need to use clamps and heparin between each use of the line.

What care does the catheter require?

The catheter is looked after aseptically which involves careful hand washing, wearing gloves and being very clean. You will also notice a cap on the end of the catheter to protect the end.

When not in use, the PICC line has to be flushed once a week with a saline solution.

The exit site dressing also needs to be changed once a week. The old dressing is removed and the skin is cleaned with an antiseptic solution. A small loop is placed in the line and steri-strips help to secure it. A clean dressing is then reapplied. If the dressing becomes loose, wet or dirty, it must be changed immediately.

Safety aspects For PICCs infection

Observe the exit site (where the tube comes out of the arm) for any signs of infection:

• Redness
• Swelling
• Pain
• Discharge ie blood or pus

If this should occur take your child to your local hospital or call your paediatric community nurse for assessment, swab and blood cultures. An infection needs to be treated promptly as it may progress to a line infection (infection inside the catheter).

If your child’s temperature is 38.0ºc or above go straight to your local hospital. This is because when children are feverish and unwell, they are very susceptible to infection and the PICC line is a possible source of infection.

If the dressing is soiled with blood or looks wet under the dressing, it will need changing, as this increases the risk of infection. Otherwise the dressing needs changing once a week, your community team will do this.

Try to keep the PICC - including the ends, dry. Tape it up out of the way when your child is having a bath.

If the cap falls off, wash your hands well, clean the end of the PICC with an alcowipe being careful not to touch the end, and put on a new cap. Never put back on an old cap. Please tell your community nurse so that blood cultures can be taken.

Accidental removal of line

Please ensure that the PICC is securely fastened with steri-strips and that it is completely covered to half way down the hub with IV 3000. If possible the PICC should be looped underneath the dressing to prevent accidental damage or dislodgement. When not in use the area around the PICC can be covered with a bandage to provide extra security.

If the line is accidentally removed, pressure should be applied, for 5 to 10 minutes, to the exit site, to stop any bleeding.

If the line falls out, take your child and the PICC to the ward at your local hospital.

Broken line

You will be given some blue clamps to take home with you. Ensure you carry them around with you at all times.

If the PICC breaks, or you can see a hole in it, clamp the line between the exit site and the break. The line can be mended, so wrap a piece of occlusive dressing (e.g. a small IV3000) around the break to ensure that the line doesn't get dirty. Then place a piece of gauze around the line before you apply the clamps. These prevent air getting in and blood coming out of the line.

Use the third section of the blue clamps (at the bottom of the "V"), as the first section may damage the line further, and the second section won't clamp the line sufficiently. If you don't have your blue clamps on you, bend the line over and hold it with your fingers. Take your child up to your local hospital to have them assessed and to check that the line has been clamped properly. They will make arrangements with us to have it repaired

If you do not have the clamps with you, you should bend the line over and hold with your fingers and ring for an ambulance.

Why play?

Play is a familiar language used across the world by children as they explore, learn and understand about their world and the people in it. That language can be lost in times of illness, injury or trauma—but rarely is it needed more.

Play is recognised by the Department of Health as essential support for children coping with illness and hospital life [NSF: 2003]. It is an invaluable communication tool for all of us to use when supporting children’s specialist developmental needs. Babies, schoolchildren, young people, their families and paediatric staff can greatly benefit from a professional play service supporting them throughout a variety of healthcare experiences.

Hospital play staff

Chelsea and Westminster Hospital has a well-established Play Service which offers a range of expertise and resources for all children and families . Our team of hospital play specialists and assistants have completed professional training to use play in healthcare. They offer a variety of strategies including normalising/developmental play, emotional outlet/therapeutic play, procedural play and physiological play.

Our aims

Through play we aim to provide:

• An essential degree of normality for children and their families in abnormal surroundings
• Developmental play facilities in all areas of the hospital where children are cared for
• A lowering of stress and anxiety for children, families and other staff
• A raised understanding of the benefits of specialist play in healthcare

What we provide

Visits before admission to help children and their families become familiar with the hospital and staff

A range of developmental toys, games and play activities to help reassure babies, children and teenagers across the children’s wards and in children’s outpatient areas.

Play preparation working with parents and other staff using medical play to help children understand their hospital experiences at an appropriate level.

Teaching of distraction and relaxation techniques for families, children, teenagers and staff to help raise coping skills during treatments.

Therapeutic play sessions supporting children and teenagers as they process feelings about their hospital care and illness.

Use of our sensory play rooms offering a range of multisensory experiences.

A teaching programme for multidisciplinary teams and affiliated agencies using the practical and theoretical aspects of play within healthcare.

Referral service for children and teenagers benefiting from one-to-one support.

Play rooms and children’s wards

Monday–Friday: Play rooms on the wards are open on a supervised basis at the discretion of the play specialists (depending on the demands of the service and in line with infection control guidelines). At mealtimes the play rooms will be closed for cleaning.

Evenings and weekends: During evenings and weekends the play rooms are open at the discretion of the nursing staff. Hospital play specialists are currently not available at these times.

Children’s Outpatients

Hospital play staff are available throughout Mondays to Fridays offering a range of activities. You can also ask for individual support for a child who may be experiencing difficulties coping with examination and treatment.

We ask that you please do not leave your children, including any brothers and sisters, unattended in the waiting area without speaking with the hospital play specialist first.

Parents and carers

As a parent or carer you play an important role in helping to create a sense of normality for your child while they are in hospital.

We encourage parents and carers to stay with their children and join in with play opportunities throughout the day.

It is important that families and staff speak with their play specialist before leaving a child within the play areas. We can only offer limited supervision during parent/carer absence as we may be called away to support other children at any time

Play Service

‘Play can be a therapy, a medicine and a natural healer that promotes humour, happiness and wholeness... an absence of fun, little or no playtime and a lack of laughter are common symptoms of stress, sickness and disease.’

—Robert Holden, Stress Expert

What is irritable hip?

All the freely movable joints of the body have a lubricating lining called the synovial membrane. Irritable hip occurs when the membrane becomes inflamed for a short period of time (otherwise known as ‘transient synovitis’).

The inflammation causes pain. The synovial membrane produces more than its usual thin film of lubricating fluid when it is inflamed and this can result in more pain in the joint.

Irritable hip occurs in children (usually aged between 3 and 10 years) and is more common in boys than girls.

What causes irritable hip?

Unfortunately no one knows the cause. It may be due to a virus, or perhaps a reaction to an infection somewhere else in the body.

What problems can it cause?

The inflammation in the joint sometimes happens after a flu-like illness. A child will complain of pain in one hip on walking. The pain can be felt in the groin, thigh or even the knee on that side. You may notice that your child is walking unevenly or limping.

How is the diagnosis made?

The diagnosis is usually made from the history and description of the problem and from the examination and observation of your child.

It may be that X-rays and / or blood tests are taken, but this is not always necessary. Your doctor will want to rule out other, more serious problems that can look similar to irritable hip.

One of the most important of these is a bacterial infection in the hip, which needs to be diagnosed and treated relatively quickly to prevent any damage occurring to the hip joint.

How should it be treated?

Children with irritable hip may find walking and standing painful. They should be allowed to rest so that pain is avoided.

It may help to lie on their back and find the most comfortable position for their leg.

An anti-inflammatory medicine, such as ibuprofen may be recommended to ease the swelling of the synovial membrane. Simple pain killers such as paracetamol may also help.

Your child should not take part in sporting activity (apart from gentle swimming) for a couple of weeks after the illness.

When to come back to A&E?

You should return to A&E if:

• Your child is not better after 7 days of rest
• Your child develops a high temperature or is generally not well in himself or herself
• Your child is in more pain or is not able to put weight on their leg to walk

In most cases you will have been given a review appointment (often in the Paediatric A&E) in two or three days’ time.

Skin care for children with eczema emollients

• Emollients are designed to soothe and hydrate the skin
• Ointments are better for dry skin as they form a layer on the skin
• They are safe to use and the effects are short lived therefore they must be applied often but you do not need to apply thickly
• If emollient is in a tub, a spoon should be used to decant some onto a saucer as this will prevent contamination of the creams
• Emollients should be applied quickly and gently onto skin in a downward movement in order to minimise plugging of the hair follicles, which can lead to infection
• Encourage your child to apply emollients each time you see them scratching
• Regular and frequent use of the emollients can go some way to reducing a flare-up of eczema.

Bath emollients

• To minimise stinging, apply a soap substitute before entering the bath
• They are designed to disperse in water and coat the body on entering and leaving the bath
• Water should be tepid, as hot water will cause irritation to the skin
• Pat dry as rubbing will cause irritation.

Topical steroids

• These are needed to control the eczema as they reduce inflammation
• Only use what your doctor prescribes and never be tempted to use other people’s prescriptions
• You should decant some onto a saucer and apply enough to show a fine visible film to all areas of eczema
• It should be applied twice daily unless your doctor informs you otherwise
• When you see an improvement, try reducing application to once daily
• If control of the condition is maintained, you can try applying the topical steroid on alternate days and so on until eczema is controlled
• If your child has a flare-up of eczema you should go back to twice-daily application of topical steroid, or contact your GP
• Leave approximately 30 minutes between steroid and emollient application to avoid dilution of the topical steroid
• Skin care should become part of your everyday routine—please do not be tempted to miss any treatments.

Hair and scalp care

• Hair should be washed and rinsed separately from your bath as the shampoo may irritate the skin
• If a medicated shampoo is used, massage it onto the scalp and leave for five minutes before rinsing
• If eczema is on the scalp avoid use of hair dryer as the heat will cause irritation.

Infection

Staphylococcus aureus is an organism that is found on the skin of most children with eczema and can be there without causing any problems. However, sometimes when the skin is damaged through persistent scratching it may lead to infection.

Symptoms that suggest your child may have developed an infection include:

• sudden deterioration in your child’s eczema
• your child is unwell
• eczema is wet and weeping.

Your doctor may take a skin swab to check that the correct antibiotic is prescribed.

When the skin is infected you should not use ointments but change to a cream as the ointment acts as a protective cover and will prevent oozing, which could make the eczema worse.

Streptococcus infection is another organism which can cause skin infection. Your child’s skin may be very red and they may be unwell.

It is often possible to treat these infections at home with antibiotics but remember it may be necessary to admit your child to hospital for a few days.

Herpes simplex virus (cold sores)

Children with eczema should be kept away from those with cold sores and if you have one, please avoid kissing your child.

Children with eczema have an abnormal response to this virus and it will quickly spread.

You can recognise it as clusters of little blisters grouped together or eroded lesions.

If you suspect your child has contracted cold sores, please see your GP immediately as you will need to get an antiviral medicine.

If it is widespread your child will be admitted to hospital for intravenous antiviral drugs.

Treatment notes

• Avoid extremes of temperature

• Use non-biological washing powder and no fabric softeners
• Avoid scented products
• Avoid wool garments
• Damp dust and vacuum the sleeping environment daily—try to do this when your child is not around
• Bedroom should be cool and well ventilated
• Avoid contact with animal hair/fur

Please note: If using Pimecrolimus or Tacrolimus cream please see product box for further information.

Seborrhoeic dermatitis

This is a common condition of infancy and is characterised by erythema (redness) and yellow scale on the scalp and sometimes the eyebrows. Unlike atopic eczema it is not itchy, uncomfortable or painful but can look unsightly.

It generally affects infants under three months of age, occurring mainly on the scalp (as cradle cap), eyebrows, face and limb flexures. It can also affect the nappy area.

It will generally clear on its own with mild emollient therapy—for example, emollient bath once daily and application of emollient creams.

It may be necessary to use a mild topical steroid on the affected areas of skin, but your doctor will assess and advise which treatment is necessary.

Treatment

• Bath once daily in a bath emollient
• Apply moisturiser twice daily
• Apply any medicated creams as directed by the dermatology nurse.

Cradle cap

Cradle cap varies in severity from mild covering of dry flaky skin to a thick scaly scalp. It is generally a greasy yellow scale with a tell-tale crusted appearance.

Treatment

• Use a bland emollient or petroleum jelly to gently massage onto the scalp and leave for 30 minutes. Oil must not be left on the scalp as it can block hair follicles and cause subsequent infection—therefore a mild baby shampoo is recommended to wash it off.
• A soft baby comb/brush or cloth can then be used to gently remove loosened scales
• Do not pick at the scales as this can lead to damage of the hair follicle and result in permanent hair loss.

If scalp has an offensive odour, there may be a secondary infection.

You may be given a cream by the doctor to treat this. It should be applied after the treatment detailed above.

If you have any worries or concerns please contact your GP.

Before the treatments

Laser treatment with a pulsed dye laser produces an intense but gentle burst of light that is absorbed by the red colour in blood vessels. It is a safe and effective way to treat vascular lesions and birthmarks.

Your child will need to wear a high factor sunblock for the whole course of the treatment and for a year afterwards as sunlight can darken birthmarks. We will not be able to carry out the laser treatment if your child has a sun tan.

Please tell us if your child has a cold sore as we may have to postpone the laser treatment until it has healed.

What to expect

Each treatment consists of pulses or laser ‘dots’. There may be multiple dots in one treatment session. A local anaesthetic cream may be applied to the skin first to make it numb. Most children will have a ‘test patch’ of laser dots but if the area is very small this might not be necessary. A series of laser treatments may be planned depending on the characteristics of the area to be treated. To protect eyes from the laser beam, the patient and everyone in the treatment room will wear protective goggles or eye shields.

If your child has laser treatment using local anaesthetic they will be able to go home very soon afterwards. If your child has had a general anaesthetic they will need to stay for at least two hours afterwards.

We will take photographs of the area being treated with your consent.

After the treatments

A cold dressing will be applied to the treated area to make it more comfortable.

Your child’s skin may look red, bruised or feel mildly sunburnt for seven to ten days and will need to be looked after.

• Please bring some unperfumed moisturiser to apply after laser treatment (Diprobase ointment, Aloe vera gel or Dermamist spray for larger areas).
• Gently apply the moisturiser three or four times a day for ten days; please do not rub in.
• Any discomfort just after treatment can be relieved by applying an ice pack. Paracetamol can also help.
• Your child can have a shower or bath but do not use soap, bubble bath, shampoo or cosmetic camouflage/make up for one week. Allow the treated area to dry naturally or gently pat dry with a soft towel (do not rub).
• Your child should avoid PE, games and swimming for three weeks after treatment to prevent damage to the lasered skin.
• It is very important not to expose the area to sunlight whilst having laser treatment and for one year after completion of treatments. Your child should use a high factor sun block (35 or higher) at all times in the UK from March to October. If you are visiting a sunny country at any time of the year your child should wear sun block all of the time. If the treated area is on the face then please wear a hat in the sun.

If the area crust, blisters, show signs of infection or develops significant swelling lasting more than 24 hours please contact the nurse specialist. Occasionally an anti-biotic cream or oral anti-inflammatory medication may be required.

Advice following dental surgery

For the first 24 hours your child should avoid:

• Any food or drinks that are very hot, cold, hard or sharp
• Mouthwashes or spitting forcefully
• Exercise, playing sport or rushing around
• Touching or sucking the wound.

These can all cause further bleeding.

We advise a soft diet for the first 28 hours following your child’s dental surgery.

Bleeding

When your child has a tooth removed, he or she is left with a hole (tooth socket) in the jawbone. At first a blood clot forms, before healing over completely. 

It is normal to have blood stained saliva for about 24 hours after the tooth (teeth) have been removed.

Encourage your child to rest. They should not rush around, play sports or exercise as this will cause further bleeding.

Do not let your child rinse their mouth, forcefully spit, drink through a straw or consume fizzy and sugary drinks.

Do not let your child press his or her fingers (and tongue where possible) into the tooth socket at any time.

If the tooth socket starts to bleed again, take a piece of gauze, place it over the tooth socket and have your child bite down for at least five minutes.  Rest for 10-20 minutes – this should stop the bleeding.

Local anaesthesia

During the dental procedure today your child may have been given an injection of local anaesthetic into the gum, near where the tooth has been removed. This helps to minimise the pain during and after the procedure. The local anaesthetic used causes temporary numbness to the areas inside the mouth.

Take care your child does not bite or chew the cheek, lip or tongue. If a local anaesthetic has been used the numbness should slowly wear off within 2-3 hours.

We advise that your child does not eat and only drinks water during this time.

Pain relief

During the week after dental surgery your child may experience some discomfort, swelling and bruising around the cheeks, jaw and neck.

You may need to give your child pain relief, this can be their usual pain killer. You can buy this at your local pharmacy and follow the instructions on the side of the bottle.

Stitches

Your child may have had stitches (sutures) to close the tooth sockets. These stitches will be dissolvable, (not require removal) unless you are told by the dentist. It takes about two weeks for the stitches to dissolve.

Do not let your child fiddle with the stitches using his or her fingers or tongue.

Oral hygiene

It is important to keep the tooth sockets as clean as possible for the first few weeks after the procedure.

We advised to brush the teeth with a toothbrush and fluoride toothpaste avoiding the surgical extraction site. We recommend starting brushing the teeth as soon as possible and depending on the type of surgery/ extraction site. 

We advise the use of mouthwash (salt water or whatever the dentist has advised) for children over the age of five years old that are able to spit; this should only start 24 hours following the surgical procedure.  We recommend that until the stitches disappear and your child’s mouth looks and feels healed you continue with the mouth wash.

In case of an emergency

Please seek advice if your child experiences any of the following:

• New or increased bleeding
• Increasing pain not controlled with regular painkillers
• Increased swelling (you should expect there to be some swelling)

If you have any concerns or questions please contact the dental nurses, NHS 111 or your GP.

What is tooth decay?

Tooth decay is also called dental cavities or dental caries. This is the destruction of the outer surface (enamel) of a tooth and leads to the tooth getting damaged therefore needing fillings or tooth removal.

Decay results from the action of bacteria that live in the plaque. The plaque bacteria sticking to the tooth use the sugar from food particles in the mouth to produce acid that attack the teeth and destroy the enamel.

Diet can affect teeth

Food and drink that contain sugar cause tooth decay. If you control how often you have sugary food and drink then look at how you can lessen the amount it will definitely help with the health of your child’s teeth.

We would recommend looking at your child’s diet and the amount of sugar they eat and how often they have it. Then consider how you can reduce this.

What causes tooth decay?

The main cause of tooth decay is the sugar that is in the food and drinks they have. Every time you eat and drink anything sugary your teeth are under attack from the plaque acids for up to one hour. This is because the sugar mixes with bacteria in the plaque to produce harmful acids.

This is why it is important to keep sugary foods and drinks to mealtimes only. If you are hungry between meals then you should choose foods that are kind to your teeth and do not have added sugar.

Here are some foods that are kind to your teeth:

• Fresh fruit
• Raw vegetable pieces
• Plain popcorn
• Cheese
• Breadsticks
• Plain yogurt
• Rice cakes
• Unsweetened cereal
• Crumpets
• Plain bagels
• Cheese scones
• Nuts (depending on your child’s age)

Can I eat snacks?

It is better to have three or four meals a day and avoid frequent snacking.

If you do need a snack between meals, choose foods that do not contain sugar.

Fruit does contain acids, which can erode your teeth. However, this is only damaging to your teeth if you eat an unusually large amount. Try to limit dried fruit as it is high in sugar and can stick to the teeth. If you do eat fruit as a snack try to eat something alkaline such as cheese afterwards. Savoury snacks are better.

Tips for healthy snacks:

• Cheese
• Hummus
• Raw vegetables
• Marmite
• Break sticks
• Natural plain yogurt
• Rice cakes
• Savoury sandwiches

Savoury sandwiches include:

• Tuna and cucumber
• Cheese
• Egg and cress
• Chicken and sweetcorn
• Cold meats

What should I drink?

When you are thirsty plain water and milk are the best drinks for your teeth. Fruit juices you should be given only at mealtimes and add water to them.

Babies and infants

• Breastfeeding is great for babies but suckling all night long (especially for infants over 1 year) could be damaging to teeth.
• From six months old infants should be introduced to drinking from a cup
• It is advised that sugar is not added to weaning foods, this may encourage a sweet tooth and also cause tooth decay.

Remember:

• Sugar contains calories only, no vitamins or proteins
• Limit the frequency and amount of sugary foods and drink
• Water and milk in a cup are the best drinks for teeth.

Further information

• Oral hygiene on patient.info
• Tooth decay on patient.info

Day cases

A day case means that your child will come into hospital on the day of their operation or procedure and will be able to go home on the same day. When you arrive at the hospital, come up to the first floor, by lift or escalator. When having a day case procedure your child will be admitted to one of the following wards:

• Saturn Ward, Mercury Ward, Neptune Ward, or Jupiter Ward (Adolescent Unit)- the main day case area is Saturn Ward.

Our young patients are encouraged to spend time in the play room until they go through to the operating theatre or have their operation/procedure. In our play room, we have toys, books and activities for children of all ages. Children must be supervised at all times. Staff will introduce themselves to you and we all wear name badges which show our name and job title.

Day of admission

If your child becomes unwell and develops a temperature before their admission date, please inform us so that we can advise you. If your child’s visit is cancelled because they are unwell you will be sent another date to come in as soon as possible. Remember: you may have fasting instructions for your child. You must follow those instructions or the operation cannot proceed.

Things to bring with you

• Medication that your child is taking—give this to the nursing staff when you arrive on the ward.
• A favourite toy or comforter, or a quiet game to help distract your child during the day.
• An empty beaker or feeding bottle so that they can be given something to drink AFTER the procedure.
• Your child’s Health Record Book, i.e. the Red Book.
• The name of your GP and health visitor with their full address and contact telephone numbers. A report on a child under five is sent to the health visitor and a report on every child is sent to their GP.
• The name of your child’s school and its full postal address. A report on every child of school age is sent to the school nurse.
• If applicable your income support book. You will need this if you require financial assistance towards the cost of your travel. Money can be reclaimed from the cashiers situated on the lower ground floor between lift banks C and D, opposite the hospital restaurant.
• Loose fitting clothes for the journey home if you think your child will need them.

Valuables

Please do not bring any valuables with you. The hospital does not accept liability for any loss or damage to your personal property. If your child wears jewellery, this should be removed and left at home. Please also remove any nail polish.

Other children/relatives

Please do not bring other family members into hospital with you. We are happy to welcome parents, but there is simply no space for other family members.

Facilities & policies

Eating facilities

During the day you may want a cup of tea, a soft drink or a meal. There are a number of options. There is a restaurant on the lower ground floor of the hospital—take lift bank C, and then go right and right again. There is a coffee shop on the ground floor behind lift bank B. There are also coffee shops and restaurants along the Fulham Road.

After your child’s operation/procedure they will be able to have something to eat and drink, but please wait until you have spoken to a nurse before offering them anything.

Parking facilities

Parents of children being treated at this hospital have a special reduced rate if they wish to use the hospital car park. The car park is situated in the basement. The staff can help you to claim the reduced rate before you leave the unit.

Mobile phones

Please keep your mobile on silent and be considerate about using it in patient areas

No smoking policy

Chelsea and Westminster Hospital operates a strict no smoking policy. Please do not smoke in or around the hospital building.

Going home

The nurse and doctor caring for your child will decide when he/she can go home. This is usually about 2 hours after your child has returned to the ward. The time of discharge will vary from child to child, according to their recovery. You may be given written instructions advising you of any potential problems and who to contact if you have any additional questions once you arrive home. You will also be advised if you need to bring your child to any follow up appointments.

There is no need to force your child to eat, but do encourage them to take some liquid.

What to expect at home

Your child may feel tired for the rest of the day. That is to be expected. They may have some discomfort and/or a slight temperature. An appropriate dose of medication should help minimise pain or make him/her comfortable. Follow the instructions on the medication.

If they are more awake they should still be encouraged to occupy themselves with a quiet activity, e.g. reading or watching television. 

Before your child’s surgery

Things to bring

Pack a bag with slippers, a dressing gown and things to do to keep your child occupied. Bring your child’s Red Book if you have one.

Your child should wear a loose fitting top. Their hand may be in a bulky dressing after their operation.

Medicines

If you have been given antibiotics or painkillers, please give them to your child as instructed. If your child normally takes any other medications, please give these as per their normal routine unless told otherwise by your doctor.

If applicable, bring your child’s inhaler and any other medications they may normally take on the day.

Childcare

A maximum of two adults will be allowed in the department and one must be the legal guardian to sign consent.

We unfortunately do not have the facilities to look after other siblings. Please find a baby sitter for your other children.

Illness

If your child is unwell with a cough, temperature, vomiting, diarrhoea or any other infectious illness then please contact us for advice.

Please also contact us if you are unable to attend so that your child’s slot can be given to another child.

Details

Please be aware that these admission times are to allow the nursing and anaesthetic staff to carry out the necessary preoperative checks. This is not the time of your child’s operation. This will be decided on the day by the operating surgeon.

Children are usually operated upon in age order unless otherwise dictated by clinical priority. Please be prepared to wait for up to a few hours.

Fasting instructions

If your child is having a general anaesthetic (put to sleep during the procedure):

• They must not eat after 2:30am for morning operations or 7:30am for afternoon operations
• They may drink water only until 6:30am for morning operations or 11:30am for afternoon operations (not milk)
• They must not chew gum or have any other sweets on the day.

If they are having a local anaesthetic (kept awake during the procedure) they may eat and drink as normal before surgery.

General information

Only one parent will be able to accompany their child in to the anaesthetic room until they are put to sleep. After that you will be asked to wait in the parent’s lounge for the duration of the operation.

You will need to stay for approximately two hours after your child’s general anaesthetic until your child is eating and drinking and is comfortable.

You will be advised if you need to come back for an outpatient appointment.

After discharge

Pain relief

It will be helpful to have painkillers at home. Paracetamol and ibuprofen will be suitable for most children. Your doctor can advise you if you are unsure.

Hand elevation

If you have been given a sling, please use it during the day. Your child’s hand should be above the level of their heart. This will reduce swelling and pain.

At night you can remove their hand from the sling. Please rest their hand up on pillows whilst they are lying in bed.

Keep the dressing clean and dry

If your child’s dressing or plaster gets wet or dirty please contact the hospital to ask for advice.

You may need to come in again for a dressing change.

There may be a problem if your child has:

• Fingers which are dusky or very pale compared to their other fingers
• Pain that is increasing or that is not controlled with painkillers
• Their bandage or cast feels too tight because of swelling
• There is pus or a smelly discharge coming from their wound
• Their plaster gets wet or starts to break
• Their hand is bleeding and this doesn’t stop even when you raise their hand above their head and apply firm pressure for five minutes.

Introduction

This leaflet explains hernias and what to expect when your child comes to either the Chelsea  and Westminster Hospital or West Middlesex University Hospital for their operation.

What is a hernia?

A hernia describes a small piece of abdominal lining, and sometimes a section of the bowel, which bulges out through a weak area in the muscles of the abdominal wall. Both children and adults can have hernias. Sometimes it is present at birth. The hernia can look bigger when your child cries or strains. You may hear your child's hernia referred to as an 'inguinal hernia' or a 'femoral hernia'. These names refer to the exact part of your child's abdomen which have the muscle weakness. Both types of hernia are treated in the same way.

How common are hernias in children?

Hernias are more common in boys than girls. About one in 50 boys will have a hernia during their childhood. The condition is also more common in babies born prematurely.

Is it possible to prevent a hernia?

There is no known way of preventing a hernia.

How is a hernia diagnosed?

Your doctor will be able to diagnose the hernia by clinical examination as it appears as a characteristic lump in your child's abdomen. Your child may not need any further diagnostic investigations.

How are hernias treated?

Your child will need a small operation. In many cases this can be carried out as day surgery - your child will arrive at the hospital, have the operation and be able to go home on the same day. Occasionally a child will need to stay in hospital for two or three days.

What happens before the operation? 

You will receive information about how to prepare your child for the operation in your admission letter/email. Your child should not have anything to eat or drink beforehand for the amount of time specified in the letter. It is important to follow these instructions - otherwise your child's operation may need to be delayed or even cancelled.

The day you come to hospital for the operation, your child's surgeon will explain the operation in detail, discuss any worries you may have and ask you to sign a consent form. An anaesthetist will also see you to explain your child's anaesthetic in more detail. If your child has any medical problems, such as allergies, please tell the doctors.

What does the operation involve?

Your child will be given a general anaesthetic and will be asleep during the operation. The surgeon will make a small incision over the bulge in the groin or pass a scope through the tummy button and repair using keyhole surgery instruments. The abdominal lining and piece of bowel will be pushed back into place.  If the incision is in the groin a small telescope may be passed through the hernia (laparoscopy or keyhole surgery) in order to identify the presence or absence of another hernia on the other side. This occurs in 1 in 10 children. If this is the case another incision will be made on the opposite side. The muscle wall beneath one/ both groin cuts will be repaired and the cut will be closed with stitches. These stitches will dissolve and will not have to be removed. A glue will be placed over the incision.

Are there any risks?

Every anaesthetic carries a risk of complications, but this is very small. Your child's anaesthetist is an experienced doctor who is trained to deal with any complications. After an anaesthetic, a child sometimes feels sick and vomits, has a headache, sore throat or feels dizzy. These effects are usually short-lived. Any surgery also carries a small risk of infection or bleeding.

What happens afterwards?

After the operation, your child may feel some tenderness and have bruising in the groin area.

If your child feels uncomfortable, a painkiller such as liquid paracetamol will help. It's a good idea for your child to wear loose clothing while the area is sore. Babies can wear nappies as usual. You can give your child a bath two days after the operation. However, avoid long baths until the wound has settled down. Do not use cream around the wound as it may cause irritation.

Your child's surgeon may ask you to come back for an outpatients appointment.

Are there any long term effects of hernia repair?

More than 99% of hernia repair operations are successful. You should see an immediate reduction or the complete disappearance of the hernia.

What is caudal anaesthesia?

When your child has an operation, the general anaesthetic will make your child unconscious. Pain relief before and during the operation can be provided using pain relieving medicines that will affect the whole body or alternatively by injecting local anaesthetic to numb (block) the area of the operation.

What is a caudal block?

• This is an injection of local anaesthetic (numbing agent) into the caudal space, at the base of your child’s spine
• It is a good form of pain relief for children who are having operations below the level of their belly button
• It provides pain relief both during and after the operation
• It may last for up to six hours or more
• Your anaesthetist will discuss this with you before your child goes to have their operation

Benefits

• Numbing the nerves at the base of the back , means your child will feel little or no pain
• Avoids needing to use strong pain relief which have side effects
• Reduce sickness and usually decreases recover time after the operation

Complications

Your anaesthetist will discuss these with you before the operation.

Common

Weak / heavy legs

• This is the most common side effect and occurs as the block affects the nerves supplying the legs. It is temporary and strength to the legs will return to normal as the block wears off

Inadequate pain relief

• In about 1 in 20 children the block does not  work
• If this is the case the anaesthetist will give your child other forms of pain relief

Difficulty passing urine

• Usually, this is not a problem and patients manage to pass urine when they have had enough fluid to drink
• Rarely, a catheter needs to be inserted temporarily into your child’s bladder to empty it

Uncommon

Sedation

This may occur if your child has been given other pain relief along with the local anaesthetic (caudal block).

Itching

This may occur if your child has been given morphine like pain relieving medication in addition to local anaesthetic.

Rare

Nerve damage

This occurs in less than 1 in 10,000 and may be temporary or permanent.

Very rare

The following are very rare recognised complications and checks are taken throughout the process to prevent these

Your child’s anaesthetist will discuss them in more detail

• Infection
• Haematoma (bruise)
• Injection of local anaesthetic in blood / spinal space

Advice at home

It is safe for children to be discharged the same day as having had a caudal block.

Pain relief      

It is important to give your child regular mild pain relief (Paracetamol/ Ibuprofen) as advised by your clinician, even if your child is comfortable. This will help as the caudal block starts to wear off and can be gradually reduced in frequency over the next couple of days.

Safety

• Key safety information is listed overleaf

Key points

Continue regular mild pain relief at home and decrease slowly.

It may take 12 hours for the normal feeling to return to your child’s legs.

• Avoid hot baths / hot water bottles
• supervise your child while crawling

Keep child well hydrated

• Encourage your child to drink water

Monitor for difficulty passing urine

• Inability to pass any urine
• Pain in the lower tummy
• Bloated lower tummy

If your child has not passed urine in 8-10 hours after the operation or has these problems please contact your GP or go to your local Emergency Department.

Paediatric pre-anaesthetic assessment

Pre-assessment is to ensure your child is fit for their anaesthetic and surgery. It also gives you and your child an opportunity to ask questions about the operation and to discuss what to expect on the day of surgery.

Not all patients require a pre-assessment—you will be notified of the pre-assessment date via letter or phone if it is applicable to your child.

Mastoidectomy advice

Your child is having a mastoidectomy which is an exploration of the ear and removal of any infected material to reduce the risk of possible complications associated with infection.

It is important in the run up to your operation date that your child does not have a cough, cold or any respiratory or throat infections.

Please contact the Paediatric Admissions Team on 020 3315 8018 during working hours if this occurs, as you may to need to have your operation date changed.

Day of admission

If your child is coming at 07:15am:

• No food or milk after 02:30am and water only until 05:30am.

If your child is coming at 12pm:

• No food or milk after 07:30am and water only until 10:30am.

Your child’s surgery may be delayed or cancelled on the day if the fasting instructions are not followed precisely.

On the day of the operation, a maximum of two adults are permitted to accompany your child—one of whom needs to be a legal guardian to sign consent. Please arrange care for siblings as we cannot accommodate them on the ward.

On arrival, the children’s nurses will prepare your child for surgery by asking if there have been any changes to their health since pre-assessment and to recheck their blood pressure etc. Ametop (local anaesthetic cream) will be applied to both hands.

All care and procedures will be explained to you and your child. You will see the surgeon who will discuss the operation with you and if you have not already done so sign a consent form. The anaesthetist will also meet you and your child.

One parent/guardian may accompany your child to the anaesthetic room.

Car parking

The rates are reduced on the operation day for your child, please ask the nurse looking after your child to arrange this.

After the operation

Initially after the operation your child will go to paediatric recovery. As soon as your child wakes you will be called to recovery. They are then transferred back to the children’s ward where their condition will be monitored and closely observed.

Children can be very miserable after waking and as the anaesthetic wears off, this is normal until your child is fully awake. Your child will be encouraged to eat and drink a normal diet once they are fully awake.

If your child needs to stay overnight, one parent/guardian may accompany him/her.

Discharge home

A mastoidectomy can be a painful procedure. This pain can last for up to two weeks. The pain may get worse before it gets better (usually from days 4–7) and you may find they complain of earache.

Please keep the ear dry until you have had a follow-up appointment with the surgeon.

• Avoid sudden head movements
• Avoid playing sport and exercise
• Avoid straining and lifting heavy weights
• Avoid nose blowing.

It is advisable to treat the pain before it builds up—therefore give medicine prescribed regularly for the first week. During the second week give pain relief medicine as required.

We advise you wait 10–14 days before your child returns to school/nursery. This is because they are susceptible to any infection during this time. They need to be kept away from crowds and people with coughs and colds during this time.

If you child becomes unwell or has a high temperature above 37.5°C, please contact your GP. If you have any concerns out of normal working hours, please contact your local A&E Department.

Paediatric pre-anaesthetic assessment

Pre-assessment is to ensure your child is fit for their anaesthetic and surgery. It also gives you and your child an opportunity to ask questions about the operation and to discuss what to expect on the day of surgery.

Not all patients require a pre-assessment—you will be notified of the pre-assessment date via letter or phone if it is applicable to your child.

Myringotomy and grommet insertion advice

Your child is having a myringotomy (a small incision in the eardrum) and insertion of grommets. This is usually recommended because your child has one or a combination of the following symptoms:

• Recurrent ear infections
• Hearing loss
• Persistent glue ear

Day of admission

If your child is coming at 07:15am:

• No food or milk after 2:30am and water only until 5:30am

If your child is coming at 12 noon:

• No food or milk after 7:30am and water only until 10:30am.

Your child’s surgery may be delayed or cancelled on the day if the fasting instructions are not followed precisely.

On the day of the operation, a maximum of two adults are permitted to accompany your child—one of whom needs to be a legal guardian to sign consent. Please arrange care for siblings as we cannot accommodate them on the ward.

On arrival, the children’s nurses will prepare your child for surgery by asking if there have been any changes to their health since pre-assessment and to recheck their blood pressure etc. Local anaesthetic cream will be applied to both hands.

All care and procedures will be explained to you and your child. You will see the surgeon who will discuss the operation with you and if you have not already done so sign a consent form. The anaesthetist will also meet you and your child.

One parent/carer may accompany your child to the anaesthetic room.

After the operation

Initially after the operation your child will go to paediatric recovery. As soon as your child wakes you will be called to recovery. They are then transferred back to the children’s ward where their condition will be monitored and closely observed.

Children can be very miserable after waking and as the anaesthetic wears off, this is normal until your child is fully awake. Your child will be encouraged to eat and drink a normal diet once they are fully awake.

If your child needs to stay overnight, one parent/guardian may accompany him/her.

Car parking

The rates are reduced on the operation day for your child, please ask the nurse looking after your child to arrange this.

Discharge home

Pain following myringotomy and insertion of grommets is fairly minimal, however if your child does experience any pain or discomfort give paracetamol as instructed on the bottle.

It can be normal to wake up the morning after the operation with a small blood stained discharge coming from the ear. This is due to the incision made when the grommet was inserted. We advise you wait 24–48 hours before your child returns to school/nursery. This is to ensure they have completely recovered from the anaesthetic and they are back to their usual self.

The grommets do not drain fluid from the ear—they equalise the pressure in the middle ear and keep it dry. If fluid does come out of the ear this could mean that your child has an ear infection and you should take your child to your GP for treatment.

The surgeon advises you to protect your child’s ears and keep them dry with ear plugs or cotton wool and Vaseline. They can swim straight after surgery with adequate water precautions.

Follow-up in the audiology clinic, 4–6 weeks after surgery.

Mercury Ward

Mercury Ward is a 24-bed unit taking both emergency and elective admissions. We care for children and their families ranging from two days old to 16 years of age.

We specialise in gastrointestinal disorders and complex children’s surgery.

We have a large team of nurses, doctors and specialist professionals committed to working with your child and we involve the family as much as possible to cater for all needs.

Nursing and support workers

Mercury Ward has a team of nursing staff and healthcare assistants who will look after your child, led by the ward sister. Day shifts are 8am–8.30pm and night shifts are 8pm–8.30am. You will also meet play specialists, domestic staff and administrative staff.

Medical

Your child’s care will be led by a consultant who has a team of doctors working with them. You will be seen by a consultant within 24 hours of your child’s admission and reviewed by the team on ward rounds daily, approximately from 9am–12 pm. Other specialities, such as surgeons, orthopaedic doctors and physiotherapy teams may visit at different times.

Visiting times

Visiting times are 8am–8pm. However, parents may remain on the ward after this time. We have limited space and in order to remain respectful of other patients we can only have two visitors per bedside at a time.

If you require a side room, this will be for a medical reason and visiting may need to be restricted.

Staying overnight

We recognise the importance of family-centred care and strive to achieve a safe and comforting environment for your child. We therefore welcome one parent/guardian to stay alongside your child overnight and, when possible, we will provide a camp bed. We do ask that these are folded away in the morning by 10am in order to keep a clean and tidy bed space.

Overnight we would like children to have as good a night’s sleep as possible to aid their recovery—we will keep noise to a minimum, but sometimes monitoring and machinery is necessary. Bedside lamps will need to remain on in order to ensure your child can be assessed at all times to maintain their safety.

Parents’ room

Please use this room as a children-free zone where you can help yourself to hot drinks and a bit of space. You are welcome to bring in your own food items or home cooking and use our fridge and microwave. We ask that the area remains as clean and tidy as when you found it so it is ready for the next parent. Please label all food in the fridge with your child’s name and the date, as our cleaning team are vigilant in maintaining a safe food environment—therefore, any unlabelled items will be discarded.

Mealtimes

Breakfast is served from a trolley outside the kitchen. Your child can help them self to toast and cereal. Their nurse will be able to help if needed.

Lunch and supper is chosen from a menu that will be brought round to you each morning so your child can make their own selection.

• Breakfast: 07:30–9am
• Lunch: 12 noon–1pm
• Dinner: 5–6pm

Water jugs are filled and refreshed twice a day. There is also a water fountain and squash available on the ward.

Playroom

We have a playroom which is open from 9am. It is a safe area for children to explore, play and sit at the table for meals with others, if they would like. We also have play specialists who are trained members of the team and can provide distraction techniques during procedures, as well as play sessions one-to-one with your child.

School

If well enough, we expect all young children and adolescents to attend the hospital school, which is on the 1st Floor. If your child cannot attend the school, teachers can bring work to the bedside.

If your child is here for a while, the school will liaise with his/her own school for work to be brought in.

Please note that we inform school nurses of all admissions to hospital.

School times are Monday to Friday 10am–12pm and 1.30–3.30pm.

Televisions

The television service is available free of charge from 7am–7pm. After this time you are able to purchase a TV card from main reception for further viewing.

Please use the provided headphones from 7pm.

Medications

If your child requires any medication for at home your doctor will prescribe it and the pharmacy team will arrange for it to arrive on Mercury ward. At times this process can take a few hours to safely arrange, therefore please be patient and bear in mind your nurse will be following up on progress on your behalf.

Car parking

We provide reduced car parking rates for parents of children who are inpatients—£10 for 24 hours.  Please ask your nurse for a voucher which you can hand in at main reception with your car park ticket when you leave.

Feedback

We welcome all feedback and encourage you to complete the children’s survey, which is available from the front desk.

You could also give your feedback verbally to either your nurse directly or the nurse in charge.

Why is hand washing so important?

Babies on the Neonatal Unit are very young and their immune systems very immature. This makes them extremely susceptible to infection.

By washing your hands thoroughly you can remove bacteria which may be harmful to your baby.

Is there a ‘right’ way to wash my hands?

Yes—follow these steps to effectively wash your hands:

• Take off your outdoor jacket or coat and hang it on the hooks provided (keep your valuables with you).
• Roll up your sleeves and remove your watch, bracelets and rings. Keep them securely in your pocket or bag until you leave the Neonatal Unit.
• Wet your hands.
• Apply soap from the dispenser and wash your hands, wrists and lower arms following the instructions in the next panel.
• Dry your hands, wrists and lower arms using the paper towels provided.
• Finally, apply the alcohol provided in the dispenser, using the same technique as when washing your hands. It will dry in a few seconds.

When should I wash my hands?

• Every time you go into the Neonatal Unit. This will help to reduce germs being carried into the unit from outside
• In the nursery
• Before and after you touch or handle your baby
• After every nappy change
• Before and after expressing breast milk
• Before and after preparing the feed for your baby
• Before you leave the Neonatal Unit. This helps to prevent germs being carried out of the unit.

If you have just washed your hands on leaving the nursery, you may use the alcohol gel instead of washing your hands before you leave the unit.

To help protect the babies on the Neonatal Unit, all parents and visitors are asked to follow the hand washing policy at all times.

We reserve the right to refuse entry to the Neonatal Unit if visitors do not follow the hand washing policy.

Please inform the Sister in Charge if you see anyone not following the hand washing policy.

If you or your relatives would like further information or advice about hand washing techniques, please speak to a member of staff

Using either soap and water or alcohol gel:

Epidural analgesia

This leaflet aims to provide information for parents of children who may benefit from an epidural for pain relief after surgery. The information in this leaflet will be discussed with you by an anaesthetist, or a member of the pain team.

What is an epidural?

An epidural is a way of giving pain relieving medicine following certain types of surgery.

Whilst your child is asleep the anaesthetist will pass a small plastic tube (the epidural catheter) into the space around the spinal cord in their back. The tube is held in place by a large plastic dressing.

Pain relieving medicine is given continuously through the tube via a pump. Two types of medicine are commonly used:

• A local anaesthetic drug
• A strong pain relieving medicine, such as fentanyl

Who looks after the epidural?

The nurses on the children’s ward are trained to look after epidurals.

Your child will need to have frequent checks of their heart rate, oxygen levels & blood pressure.

The nurse will also check how well the epidural is working by asking your child about their pain, using a cold spray and asking them to move their legs and wiggle their toes.

The pain clinical nurse specialists or an anaesthetist will review your child every day. 

Common side-effects

All strong pain relieving medicines can produce side effects.

Heavy, numb or wobbly legs

It is common for your child to have heavy, numb or wobbly legs whilst receiving an epidural. Normal feeling will return when the epidural is reduced or stopped.

Unable to pass urine (wee)

Your child will have a small tube (urinary catheter) passed into their bladder whilst they are asleep to help them pass urine. This catheter will stay in until the epidural is removed.

Itchiness, feeling sick or vomiting

Some children experience itching, nausea (feeling sick) or vomiting due to the strong pain killer used in the epidural. Medicines can be given to reduce symptoms.

Headache

It is common for your child to get a headache after any operation. Sometimes an epidural can cause a severe headache, which is worse when sitting up. Please let the pain team know if your child experiences severe headache after an epidural.

Pain

Your child will be given additional pain medications to prevent pain alongside the epidural.

Complications

Your anaesthetist will have discussed with you that the benefits of your child having an epidural are much greater than the risk of complications occurring.

Slow breathing

Slow breathing is an uncommon complication of epidural and can be treated.

Nerve damage

Nerve damage can give a loss of feeling or movement in an area of the body. In most people this gets better within a few days, weeks or months. Permanent nerve damage by the needle or catheter is extremely rare.

Epidural catheter infection

Rarely an infection can develop around the epidural catheter. If any problems occur your child’s epidural will be removed. Very rarely, an infection can develop within the space around the spinal cord. This may be treated with antibiotics and your child closely monitored.  

Stopping the epidural

Most children have an epidural for 1–3 days after their operation.

The pain and surgical teams will decide together when the epidural should be stopped. Removing the epidural is not painful. We use glue remover to make the dressing less sticky and then gently pull out the tube.

Your child will need to continue to take pain killers by mouth after the epidural is removed to prevent pain.

Going home after an epidural

After 24 hours the plaster covering the epidural site can be removed. You will need to be reviewed urgently by your GP, or in A&E if your child:

• Has any signs of redness, swelling or discharge from the epidural site
• Develops new or worsening back pain
• Feels that their legs are numb or weak, or they are not able to stand and walk as usual
• Is not able to hold in their wee or poo, when they are usually able to
• Feels unwell with a high temperature

Please tell the nurse or doctor that your child has recently had an epidural. 

Welcome to Starlight Ward

Welcome to Starlight Ward. We appreciate that this is a stressful time for you and hope that by working together, we can make your child’s stay easier. Your child will be cared for by a number of professionals within our team. These include specialist doctors, nurses and play specialists together with home care nurses, dieticians, social workers and physiotherapists.

Bed allocation

Priority for side rooms is given to infectious children and small babies.

Visiting times

We ask that you and visitors are considerate to fellow patients. Many need to sleep or rest after an operation or may be feeling unwell and need peace or privacy.

Visiting times are 1–8pm, except parents/carers who are welcome to stay with their children. Only one parent or carer can stay overnight.

Should parents or carers wish to stay, we have facilities for them to sleep next to the patient’s bed. Bed linen is provided. We ask that parent beds are folded away for ward round.

What you will need during your admission to hospital

• Pyjamas/nightdress
• Wash bag
• Toothbrush/toothpaste
• Clothes
• Favourite toy/comforter
• Nappies, changing equipment
• Special  feeds/regular medication
• Overnight bag for parents/carers if staying

We provide formula for babies and have a child friendly menu as well as the standard menu for you to choose from.

Rumbles Restaurant opening hours are 8am–8pm

Rumbles Restaurant can be found at the back of the atrium, in the East Wing of the hospital, and serves a wide range of hot and cold food, snacks and drinks. There are a number of 24-hour vending machines available in the hospital for hot and cold drinks, sweets, crisps and snacks.

Shop and ward trolley

A service selling newspapers, sweets, drinks, crisps, fruit and chocolate and minor items circulates the unit every morning.

Mobile phones

Mobile phones are allowed on the unit. We ask that mobiles are put on silent/vibrate mode and answered away from the bedside in the corridors from 8pm–8am.

Televisions

We have televisions/DVD in all cubicles. The televisions in the four bedded bays are for all children to share. A selection of DVD can be found in the playroom and adolescent room. All main ward televisions are to be turned off by 9pm.

Play specialists and play room

Play specialists are available on the unit and work from the play room. The play specialist is specially trained in preparing children for certain procedures. For example, going to theatre and distracting them during unpleasant procedures. Those children unable to access the playroom will be brought toys and activities to the bedside. You are welcome to take toys to your child’s bedside.

Ward teachers and hospital school

We are fortunate to have two school teachers and we ask that your child attends our school if eligible and well enough. The teachers will also work at the bedside if your child is unable to attend the class room.

Feedback

Your feedback is important to us to ensure we are providing the services you need.  Please help us to provide the best service to you and your family by completing the feedback form.

Welcome to Sunshine Day Unit

Coming into hospital can be stressful but we would like your stay to be as comfortable as possible. We hope this leaflet will be useful. Please read it carefully. Do not hesitate to ask staff any questions you may have.

Before coming to hospital

For your child to have their surgery he or she will not be able to eat prior to coming to hospital on the day of the operation.

• If they take regular medication please give it at 6am unless you have been advised not to give the medication when they are seen in pre-assessment clinic
• Your child must not eat food, drink milk or formula after 3am
• If your child is breastfed, their last feed must be finished by 5am
• Your child may drink small quantities of water up until 6:30am—do try and give at least one drink before 6:30am

Parents/carers

Parents or carers are welcome to come with their child. Please do not bring other family members into the hospital on this day, as there is simply no space to accommodate them.

Only one parent can accompany their child into the anaesthetic room, this is due to space restrictions.

Things to bring with you

• Any medication your child is taking
• A favourite toy or comforter
• A cup or bottle for after the procedure
• A special snack and drink for after the procedure
• Comfortable clothing

Day cases

When having a day case procedure your child will be admitted to Sunshine Day Unit, which is located on the 3^rd floor of the East Wing. Press the buzzer on the main door marked Starlight Inpatient Ward; the staff will direct you to Sunshine Day Unit.

Car parking

All visitors must pay for parking; a payment machine is located at the main entrance to the hospital.

On the day

When you arrive at Sunshine Day Unit the staff will check your child’s details. A nurse will show you to the playroom or bed area. You will briefly meet your child’s surgeon and anaesthetist.

You may have to wait a while before your child goes to theatre, during this time you are encouraged to spend time in the playroom until your child is ready to be taken to theatre. Children must be supervised at all times in the playroom.  

Parent’s room

We have a parent’s room on the unit; there is a television, microwave, fridge and facilities to make a hot drink.

Valuables

Please do not bring any valuables with you. The hospital does not accept liability for any loss or damage to your personal property. If your child wears jewellery this should be removed and left at home. Also please remove any nail polish.

Eating facilities

The unit does not provide meals for parents and carers, there are a number of options:

• Tea and coffee are available on the unit
• Rumbles restaurant on the ground floor
• The coffee shop in the main entrance 
• The hospital shop located in the main entrance
• Shop and ward trolley, a service selling newspapers, sweets, crisps, fruit and minor items circulated the unit each morning

After surgery or procedure

After the child’s surgery or procedure they will be able to have something to eat and drink. Please wait until you have spoken to a nurse before offering them anything.

Going home

The doctor or nurse looking after your child will decide when your child can go home. This is usually at least two hours after the operation. This will vary for each child depending on what was done and their recovery time.

You will be given written information advising you on the after care and advising you on potential problems. If you require any medications please ensure you give them as the doctor instructed.

Before you come in to have your procedure we advise you have some pain relief available for home we recommend paracetamol and ibuprofen unless otherwise instructed.

Friends and family tests

You (or your child) will be asked to comment on your experience during your admission on the unit. This helps develop our service and ensure we are providing the standard of care you require. We appreciate your time to help us do this. 

Introduction

This leaflet has been written for parents and carers about how to give morphine to their child at home. The information on this leaflet may be different from the information found with the medicine, because this is usually for adult patients. Keep this leaflet in a safe place so you can read it again.

What is morphine?

Morphine is a strong pain killer, used to treat moderate to severe pain in children after illness, injury or surgery.

When should I give morphine?

You should give your child morphine if they continue to have pain, despite having had their regular pain medicines (usually Paracetamol and Ibuprofen). Only give morphine when it is required, and only for pain.

How much morphine should I give?

Your doctor will work out the correct amount of morphine your child should be given. This will be written on the label—it is important that you only give the dose prescribed by your doctor. The dose can be repeated every four hours.

How should I give it?

Oral morphine (Oramorph®) is a liquid medicine. You should measure out the correct amount with the syringe or medicine spoon provided. It is important that you do not use a kitchen spoon as it will not give you the right amount.

When will morphine start working?

Your child should start to feel less pain within one hour of taking morphine.

What if my child is still in pain?

Make sure that your child has had their regular pain medicines, prescribed by your doctor (usually Paracetamol & Ibuprofen).

If, despite having had regular pain medicines and a dose of oral morphine your child is still in pain, contact your doctor.

What if I give too much?

If you think you have given your child too much morphine contact your doctor straight away.

If your child seems very sleepy, has problems with their breathing or stops breathing, your child may have had too much morphine—call an ambulance immediately.

Take the medication bottle with you, even if it is empty. It will be useful for the doctor to see.

Are there any side effects?

Most children taking morphine get constipated (difficulty doing a poo). You can help by encouraging your child to drink lots of fluids. Your doctor may also prescribe medicines that will help them go to the toilet.

Some children feel sick or are sick (vomit) when taking morphine. If this happens, contact your doctor who may prescribe a medicine to help.

Some children have difficulty passing urine (doing a wee) when taking morphine. Inform your doctor if this happens.

Your child may get headaches, a dry mouth, sweaty or skin flushing (red skin). They may also feel dizzy or lightheaded when standing.

Can other medicines be given at the same time?

You can give your child Paracetamol and Ibuprofen, unless your doctor has told you not to.

Check with your doctor or pharmacist before giving any other medicines to your child.

Where should I keep this medicine?

Keep this medicine in a cupboard away from heat and direct sunlight. Make sure that children cannot see it, or reach it.

How should I dispose of left over morphine?

Please take any leftover morphine to your local pharmacy, where they will dispose of it safely.

Do not share, or give the medication to anyone other than your child. The dose of morphine is calculated by weight; therefore it could be dangerous if you give the medication to anyone other than your child.

What happens if I run out?

We do not expect your child to need morphine for their pain for longer than 1–3 days. As the surgical site heals, your child’s pain will reduce and it is unlikely that they will continue to need strong pain killers like morphine.

If your child’s level of pain gets worse, or does not start to get better please contact your doctor.

Why is the medical necessary?

• A medical examination has been requested as there have been concerns about the welfare of your child.
• The examination will be carried out by a children’s doctor (Paediatrician) who experience in conducting such assessments.
• The doctor will explain to you and your child what will happen.
• The entire assessment should take around 1 to 1½ hours, but may be longer if we need to do assessments for more than one child.

What happens at the Child Protection Medical?

• The doctor, with attending social worker will see you and your child in the Children’s Outpatient’s department. The doctor may want to speak to the social worker alone at the beginning of the appointment.
• The doctor will then have a discussion with you about your child's current health, past medical history and development, and will conduct an examination of your child.

Discussions

As the doctor wants to know about the overall health of your child, you will be asked about:

• Any illnesses or accidents your child has had
• Their birth history
• Development
• Immunisations
• Allergies
• Any medication
• Behaviour and progress at school
• Their day to day health
• Family history
• Social history

What happens during the examination?

• Your child will have a full general examination (top-to-toe). If your child has any obvious injuries these will be noted, measured and drawn in the child’s records.
• The doctor may request for photographs to be taken of any marks or injuries seen on the child during the examination
• More specific investigations such as blood tests, scans or X-rays may need to be done. These will be explained and discussed with you.
• Your child will also be told that the examination can be stopped at any time if they/you wish.

What happens next?

• The doctor will explain the findings of the assessment to you and your child (depending on your child’s age and understanding) as well as to the social worker.
• The doctor will advise you if any further medical treatment is necessary.
• The doctor will write a report which will be sent to your child's general practitioner, health visitor/school nurse, social worker and police officer (if police are involved).
• A copy of the report will also be made available to you

What happens if you refuse to let your child be examined?

• Usually a child's parent is asked for consent for the examination. If consent is not given and if the social worker and/or police feel an examination is in your child's best interest, they may need to discuss this further with you.
• Sometimes young people may be able to give their own consent and the doctor will decide if this is possible.

We appreciate that having a child protection medical can be stressful for the family. It is important that:

• You understand what is happening.
• You and your child's views are listened to.
• If required, you will be advised on the best way you and your child can be supported during this time.

What to expect when your child is referred 

Frequently Asked Questions

What is the Social Communication Pathway (SCD)?

The SCD Pathway involves assessment, diagnosis, support and intervention for children referred to the Child Development Service who present with social communication difficulties. We hope to gain an understanding of your child’s strengths and difficulties across three areas: social interaction, social communication and social imagination.

Following the assessment, we will decide if a diagnosis of Autism Spectrum Disorder (ASD) will be useful in explaining your child’s pattern of difficulties.

What is Autism Spectrum Disorder (ASD)?

ASD is a developmental disability that affects how people perceive the world and interact with others. Individuals with ASD have difficulties with social interaction, social communication and social imagination.

For more information on ASD visit the National Autistic Society www.autism.org.uk

Why do I need to give consent?

We require consent to ensure that you understand and are happy with why we are assessing your child and what will happen during, and after, the assessment. We also seek consent for us to gain and share information with other agencies (e.g. school) that support you and your child, so we can understand your child’s strengths and difficulties across different contexts.

If you are unsure about giving consent, please contact us to discuss this further as this may impact on whether the assessment goes ahead. 

What assessments may be completed on the SCD Pathway?

Families may be invited to a number of different appointments. We may also liaise with your child’s school/nursery to gain further information. Your child’s assessment will vary depending on their individual needs, which may include:

• Developmental history: A structured interview with parents about your child asking questions about their birth, development and medical history focussing on communication and social interaction.
• Structured Diagnostic Interview: A structured interview with parents which asks specific questions about your child’s social communication skills.
•  Speech and Language Therapy (SLT) assessment: An assessment of your child’s communication skills  may be carried out through a variety of tasks and activities.
• Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child.
•  Nursery Questionnaires: To gain additional information about your child within the school/nursery context we will ask a member of staff who knows your child well to complete a series of questionnaires about your child’s social communication, learning and behaviour. 

Who is involved in assessing my child on the SCD Pathway?

• Paediatrician: A team of Paediatricians with a special interest in Social Communication Disorders
• Speech and Language therapist: A team of specialist Speech and Language Therapists experienced in the assessment of social communication difficulties.

Are any other agencies involved?

We will normally contact your child's school/ nursery and any other professionals involved in your child’s care. This helps us to get a fuller understanding of their strengths and difficulties across different settings.

Who should I contact for further information?

The SCD Pathway Coordinator is the main point of contact for all queries regarding appointment times, cancellations etc.

Cheyne SCD Coordinator: 020 3315 3153

What will happen after the assessment?

• A report summarising the assessment findings will be sent out and shared with other agencies with your consent (e.g. Nursery).
• We will refer your child to other services if required.
• If your child receives a diagnosis of ASD you will be invited to our post-diagnosis support groups. 

Contact Us

Chelsea and Westminster Hospital

Cheyne Child Development Service
Doughty House

Main Reception: 020 3315 6488
SCD Coordinator: 020 3315 3153
Clinical Nurse Specialist: ccds.cnsteam@nhs.net

• Further information

Local offers

• Kensington & Chelsea: www.rbkc.gov.uk/localoffer
• Westminster: www.localoffer.westminster.gov.uk
• Hammersmith & Fulham: www.lbhf.gov.uk/localoffer

Neonatal Community Outreach Team

The Neonatal Community Outreach Team (NCOT) is split over two hospital sites – Chelsea & Westminster Hospital and West Middlesex Hospital – each hospital has their own NCOT, led by one Senior Neonatal Sister, who works cross-site. 

Each member of the team is a Registered Nurse who has many years of experience in Neonatal Nursing. Our role is to make sure you feel well supported upon discharge and once your baby is at home.

Lead Nurse

• Claire Salgin

Chelsea and Westminster team

• Juliet Tyler
• Andrea Sanchez-Sawicka 
• Isabel Loyola

West Middlesex team 

• Jamila Manna
• Jennifer Maestrado

Both teams currently work 7 days a week, 9am–5pm.

Contact details

Chelsea and Westminster team 

T: 020 3315 7882
M: 07833 285 833

West Middlesex team   

M: 07585 128 598

The community team will offer support whilst you are on the unit and will offer teaching/advice on parent-craft and Basic Life Support. If you want to talk about anything to do with the process of your baby being discharged and what will happen leading up to it then they will come and see you to answer any questions and support you.

They support babies at home who require oxygen, weight management and nasogastric tube feeding.

You will be contacted by telephone within a few days of discharge to see how baby is settling at home. This gives you the opportunity to ask any initial questions that you may have. The team will continue to call regularly depending on your baby’s age, gestation and progress.

They also offer home visits, if required, to provide additional support. Your baby will be discharged from the community team usually within 4 weeks of being at home, and will then continue under the care of your health visitor.

Due to the vast area of Greater London, home visits will only be offered to those living in the local area of each hospital. If you are from outside of the local area, you will be supported by telephone consultation. If home visits would be potentially beneficial to you and your baby, we will discuss transfer/handover of care to your local hospital so full neonatal community support can be achieved.

Community midwife

If your baby has left the unit before 10 days of age you will be visited by your community midwife. They will weigh your baby and give advice on feeding, as well as checking up on how you are too.

Health visitor

Your community midwife will then hand over care to your health visitor who will carry out a first home visit. During this visit they will offer you advice and support on caring for your baby. Inform you of local baby clinics where you can go to get your baby weighed and local Children’s Centres who offer support groups. They will also offer advice on looking after yourself and how to get additional help if needed.                   

Your health visitor will make a plan with you if your baby is still small or premature to either visit more frequently or request for you to visit the baby clinic for check-ups.

You must register your baby with your GP as soon as possible

They will be your first point of contact for medical care; they carry out a 6-8 week post-natal check for you and your baby. If your baby was premature it may be carried out at a later time. We will send your GP a copy of your baby’s discharge summary which will inform them of any medications or specialist milk your baby may need.  Please contact them to arrange any repeat prescriptions.

If you are concerned about your baby out of hours, please call 111, or call 999 if it is an emergency.

Follow-ups after discharge

Some babies might require a Paediatric Consultant appointment or other follow up tests or exams. You will be informed prior to, or on the day of discharge if there are any appointments scheduled for your baby. Otherwise, they will be arranged by post or by telephone call.

Should you have any queries with regard to your baby’s appointment, please telephone the number on your appointment letter or alternatively call Paediatric Outpatients on 020 3315 6666. We are unable to reschedule appointments for you. 

Your child has been diagnosed with Intestinal Failure and therefore requires Home Parenteral Nutrition (HPN), to meet their nutritional needs. There are many condition’s that can lead to Intestinal Failure, your child’s diagnosis will be discussed and explained to you by the Nutrition Team. 

Childs Name:____________________________________

Diagnosis (including bowel length):____________________________________

Paediatric core nutrition team:

• Dr Krishna Soondrum- Consultant Paediatric Gastroenterologist
• Danielle Ellis- Paediatric Nutrition Clinical Nurse Specialist
• Piya Dhulia- Paediatric PN Pharmacist
• Charlene Chavda- Paediatric PN Pharmacist
• Sophie Daborn- Specialist Paediatric GI Dietician

Expanded multidisciplinary team:

• Drs Fell, Epstein and Thangarajah- Consultant Paediatric Gastroenterologists
• Mr Simon Clarke- Consultant Paediatric Surgeon
• Lisa Davey- Clinical Nurse Specialist Paediatric IBD
• Jackie Falconer and Bonnie Samani- Specialist Paediatric GI Dieticians
• Simone Hunt- Mercury Ward Manager
• Mercury Ward Nurses
• Amy and Gitta- Play team
• Samanthi Perera-Gill- Clinical Psychologist
• Drs Ben Roberton and Brahman D- Interventional Radiologists
• Laura and Analou- Speech and Language Therapists 

What Is Parenteral Nutrition (PN)?

Parenteral Nutrition (PN) is used when the digestive tract is unable to absorb enough fluid, energy and nutrients.

Parenteral Nutrition is delivered directly into the bloodstream, where the body can easily absorb and use it for energy, growth and development.

Parenteral Nutrition contains lots of ingredients:

• Water – Sterile Water is used in PN to prevent dehydration.
• Carbohydrates – These are the calories that provide the body with energy.
• Fat (Lipids) – Are another source of calories and energy.
• Protein (Nitrogen) – Is really important for growth and repair in the body. Protein also plays an important part in helping the body fight infection and the healing process
• Vitamins – Each Vitamin has a different job to do in the body. They are essential in keeping the body healthy and to grow normally.
• Minerals (Electrolytes) – The minerals that we talk about more often are Sodium, Potassium, Calcium, Phosphate and Magnesium. They help build a strong skeleton and are used by the nerves and muscles in our body.
• Trace Elements – These are also minerals – but we don’t need as much of these in our body. They include Zinc, Copper, Magnesium and Selenium.

Everyone will have different nutritional requirements; therefore every child needs a different recipe. Every recipe (prescription) is calculated by the specialist nutrition team for your child. Once the prescription has been finalised, the PN is made in a compounding unit (a sterile environment) and will be delivered to you in bags that are ready to be used.

This prescription can change over time depending on your child’s growth, age and if they are managing to tolerate enteral/oral feeds.

How do we deliver PN into the blood stream?

Home Parenteral Nutrition is delivered into the blood stream via a Central Venous Line (CVL). A central venous line sits in a central vein, close to the heart. This allows for the PN to be administered and circulated into the body quickly and safely.

Central Venous Lines can be inserted in Interventional Radiology and sometimes in a theatre (surgery). The central line is inserted into a vein through an incision (small cut) made around the level of the collarbone. The tip (end) is threaded through and sits in a large vein that leads to the top of the heart.

The other end that you can see is tunnelled under the skin and comes out generally on the chest area – called the exit site. For all children this procedure is completed under a general anaesthetic.

Date Central Line Inserted:___________________

Central Line Size:___________________

Central Line Position:___________________

Central venous line safety

The central line has various parts which you need to recognise:

The Dacron Cuff – this should not normally be visible. This is a special sleeve which surrounds the line underneath the skin at the place where the line enters the chest (the exit site). The Dacron Cuff is made of a special material, which adheres to the tissue to prevent the line from falling out and helps to prevent infection. When the line is put in it may take some time for the Dacron Cuff to adhere to the tissue. If at any point you can see the Dacron Cuff this means that the line must have moved and will need to be checked before you use it.

The Dressing and Exit Site – the central line should always have a dressing to cover the exit site (where the central line leaves the body). Underneath the dressing the central line must always be positioned with at least one loop.  Most of the time, the dressing will be occlusive (see through) so that you can see the exit site and the loop under the dressing. The dressing must be changed at least once a week.

The Clamp – is situated above the hub and is used as a safety device to prevent the flow of any fluid, air or blood into or out of the line. The clamp should be placed on the thicker reinforced area of the line. This is designed to stop the clamp from damaging the line itself. There may be times when you need to clamp the line close to your child’s chest – this will not be possible if your child has a multi lumen line, or if the clamp is faulty. You must ensure that your child’s emergency pack with disposable blue clamps is with you at all times.

The Hub – is the hard plastic portion at the end of the line, (usually red or white in colour), which is used to access the line. The Hub should always have a Bionector attached to it as a safety mechanism. When the line is not in use the Bionector should be covered with a port protector (Parafilm).

Bionectors - are ‘needle-less’, ‘closed – system’ devices. They enable you to access the central line, without ever exposing the inside of it. A Bionector can be used to give drugs or flushes by bolus or infusion or in order to take blood. A Bionector has a built in valve, which remains closed unless you attach a syringe or giving set to it. A Bionector must be changed once a week, for this reason many people choose to do this after they have completed the weekly central line dressing.

The Port Protector – a disposable passive disinfection device. This is used to reduce central line infections by keeping the Bionector clean when not in use. This is disposable – every time the central line is disconnected a new device is used. If the line is not in use they can remain in situ for seven days.

Name and size of the dressing you/your child is using:________________________

Central line safety advice including daily care and observations

Infection

Central Venous Line Infections are one of the most serious and potentially life threatening complications that can happen. As well as the most serious, a central line infection is one of the most frequent complications that we see. It is therefore essential that all precautions are taken to try and reduce and eradicate the chance of infection. 

Please note that if your child develops a temperature of 38degrees and above you should do to your local hospital immediately as your child could have a line infection or sepsis.

If worried or unsure please ring 999 and ask for an ambulance to take you to your local hospital.

• Observe the exit site and neck wound for any signs of infection;
• Redness
• Swelling
• Pain
• Heat
• Discharge i.e. blood/pus

Should any of the above occur please take your child to their local hospital or call your community nurse for assessment. Your child will require an assessment, swabs and blood specimens to be taken.

• If the central line is infected then it will need prompt treatment.
• If the dressing is soiled with blood or there is wetness under the dressing it will need to be changed as this increases the risk of infection.
• If the dressing remains intact and there is no oozing then the dressing needs to be changed once a week by the children’s’ community team.

When can I given paracetamol to my child?

Never give Paracetamol to treat a temperature. You may want to give Paracetamol/Calpol as pain relief. If using Paracetamol to treat pain, please do not give it for two hours before the PN starts and for two hours after it has started OR within two hours of the PN completion and for two after the PN has been disconnected. These are the times that are higher risk and therefore we do not want to hide a temperature. If you are ever unsure, please just call us to check.

Emergency central line care

Prevention

• Always ensure that your child’s dressing is secure and intact.
• The dressing must include a loop in the central venous line.
• Ensure that the clamp is closed when the infusion has been discontinued.
• Observe the central line site for any signs of infection (red, pus, swelling, bleeding and broken skin). Any concerns please contact the nutrition team.
• Ensure that the Bionector is secure and in place. If the Bionector is missing you must replace this as a matter of urgency but with the correct technique. Never replace the dirty Bionector.
• Ensure that the port protector is in situ if the infusion has stopped.
• Always check your child’s central line and dressing is intact prior to leaving the home. Depending on the age of your child, they must also participate in these checks.
• Always ensure that you have an Emergency Central Line pack and a copy of the Hand Held letter with you at all times.

If you have needed to discontinue the PN mid infusion, remember there is a risk of low blood sugar. If your child receives an enteral feed continue or commence this. Encourage them to have a drink or eat what they can within their diet.

In an emergency, it is essential that you attend the nearest A&E – remembering to take your Hand Held letter. Let the Nutrition team know when and where you have been admitted.

You will be provided with a safety pack containing the following items:

• 1 x pack sterile gauze
• 1 x large IV 3000 dressing
• 1 x small IV 3000
• 2 x blue clamps
• 2 x bionectors
• 4 x sani cloth CHG 2%
• 1 x roll transpore

The safety kit should accompany the child at all times, anyone caring for the child must be familiar with the pack and must have received safety training.

Your home and parenteral nutrition

All patients that are discharged home with Parenteral Nutrition must have a home assessment. This is a national requirement to ensure that the environment is safe and that you have all that you will need before going home. We will help you decide where the connection/disconnection and care procedures would be best carried out and the options for storage of the ancillaries and equipment including a dedicated fridge.

Sometimes your home may need some rearranging – we can help to advise on this. For some people we need to explore housing options if the home does not have the capacity for a patient on home parenteral nutrition.

Home care companies and the National Home Parenteral Nutrition (HPN) framework.

The national HPN framework was commissioned by NHS England to improve standards and access to home parenteral nutrition services for adults and children in England. Only companies who have formally applied to be on the framework and have demonstrated they meet the specified standards are authorised to provide homecare.

The National Framework Agreement for the Supply of Home Parenteral Nutrition for England (or framework for short) covers all aspects of home parenteral nutrition, including the making and delivery of the feed and ancillaries, and the provision of specialist nursing for those not able to administer the feed themselves. It was developed as part of a national tender commissioned via NHS England and the Commercial Medicines Unit of the Department of Health.

• Find more information via the PINNT Patient Charter

When your child is nearly ready for discharge, the chosen home care company will conduct an installation visit to deliver and set up the larger pieces of equipment (including the fridge) and ancillaries. Once you are at home, the company will deliver your child’s PN – this is generally on a weekly or fortnightly basis depending upon the prescription. They will also deliver supplies of ancillaries – they will call you prior to a delivery to ask what you need.

The company will discuss your delivery day and time – you will be allocated a two hour delivery time slot. It is essential that someone is at home or that you have made, the necessary arrangements for someone to let the delivery driver in – the PN must be unpacked straight into the fridge.

You will be given contact details for your co-ordinator including an out of hour’s emergency telephone number.

If at any time you are unhappy with the home care company, please call us to chat through any concerns/problems.

Your Home Care Company is called _____________________________________

The contact number for your Home Care Company is ________________________

Your patient care co-ordinator is _________________________________________

How to store parenteral nutrition at home

The chosen home care company will deliver all of the equipment that you require for storing and administering Parenteral Nutrition in the home, during the installation visit.

You will be provided with a dedicated fridge to store the Parenteral Nutrition. This fridge will come equipped with a thermometer, so that you can monitor the storage temperature.

• The fridge MUST only ever be used to store the Parenteral Nutrition and for some people the central line locks. This fridge MUST never store food products or medicines that are given orally or enterally. This is also true if you go on holiday.
• The Parenteral nutrition bags must be stored in single layers on each shelf (no stacking)
• Make sure that the Parenteral Nutrition bags do not touch the back wall of the fridge; this may cause them to freeze. You must never use Parenteral Nutrition that has frozen. If this happens please contact the home care company and the hospital team.
• The temperature of the fridge should always be maintained between 2 - 8 degrees Celsius.
• If you are worried that your fridge is not working as it should do, please contact the Home Care Company.
• If the PN has not been stored at the correct temperature you must not use these bags. Please contact the Home Care Company for further PN. If you have no PN to use that night please use the emergency plan. You can also contact the Chelsea and Westminster Nutrition Team for children for advice.

Prior to commencing parenteral nutrition

• You will need to remove the bag of parenteral nutrition from your fridge 4-6 hours before the infusion may begin.
• The best place to keep it until the infusion time is to hang it from your drip stand or lie on a flat surface to warm up.
• It must not be in direct heat (next to radiators etc.) or sunlight.
• Check that the correct name is printed on the PN label and that it is within its expiry date. (If any information is incorrect – contact your home care company and the nutrition team at C&W
• If you have a protective bag, ensure that this is used to cover the PN and protect it.
• Look at the bag carefully for signs of damage and/or leaks.
• Inspect the bag to ensure that there are no particles of cloudy areas. If you are infusing a Vamin bag, this should be a clear yellow colour. If you are infusing a fat bag, this should be a white colour. If you are worried about your PN please contact the home care company and the nutrition team at Chelsea and Westminster.

If the bag of parenteral nutrition does not meet your safety checks, start the checking procedure on another bag. Inform your home care company and the nutrition team at Chelsea and Westminster.

Troubleshooting PN administration

Remember to refer to your emergency central line training.

** PN buffer bags are delivered on an as and when basis. You will be delivered a spare lipid and aqueous bag. If you have used this buffer bag please contact us and your HPN coordinate to arrange delivery of more.

Flushing a central line

The central line must be flushed before any PN is administered, to prevent the mixing of incompatible medicines/mixtures and always at the end of the infusion, to maintain patency (preventing blockages).

The central line is flushed by using a prefilled 10ml syringe of 0.9% Saline. We use a technique called the push/pause technique – this helps to clear the tube of any debris and maintain patency.

If the central line is no longer in use, you must flush it once a week.

Locking a central line

Locking a central line is defined as the flush that you lock in the line at the end of the PN infusion (the last flush before clamping and securing the line).

There are a variety of locks. The lock that you use may change over time. A change of line lock will be discussed with you in hospital or in a clinic appointment.

Types of line locks

Hepsal – this is a solution of Heparinised Saline (10IU/ml). Heparin is used to dissolve blood clots. It is thought to help maintain central line patency. This is often used more commonly with our PICC lines due to the smaller size lumen.

Taurolock - The lock solution contains (cyclo)-taurolidine and citrate (4%). (Cyclo)-taurolidine has a broad antimicrobial activity against gram-positive and gram-negative bacteria and fungi. It is thought that locking Taurolock in the line will prevent the formation of bacteria biofilm. Taurolock is used after sepsis episodes.

Antibiotic locks – An antibiotic lock contains a small amount of an antiobiotic (amikacin, vancomycin, gentamicin). An Antibiotic lock is commonly used in the under 5s that seem to experience common bacterial central line sepsis episodes. The Antibiotic lock is not a long term lock.

Flushing solution on discharge - __________________________________

Lock solution on discharge - _____________________________________

Aseptic handwashing

Handwashing and hand hygiene are one most important procedure when looking after someone with a central line.

Before washing your hands remember:

• Nails should be short and well kept
• It is advisable not to wear nail varnish (if you are wearing nail varnish it should not be chipped or flaky)
• Remove rings with stones or ridges on
• Remove watches and bracelets
• Roll up long sleeves (wrists must be clear off all clothing).

This should last at least 2 minutes.

After washing your hands remember:

• Always rinse from your fingers towards the elbows (so that the dirty water is moving away from your hands)
• Dry your hands with paper towels
• Do not turn off the taps with your clean hands (use your elbows or a paper towel to turn them off)

PN administration technique and CVL care

Procedure for connecting TPN

(All procedures are based on the BAPEN Parenteral Support Catheter Guidelines 2018)

• Bag of parenteral nutrition (PN) (Check PN prescription, integrity of bag & expiry date).
• Trolley/tray.
• Detergent wipes (or paper towel, soap and water).
• 2% CHG & 70% IPA disinfectant wipes.
• Sterile dressing-pack.
• Sterile gloves. 
• 10mL pre-filled syringe(s) 0.9% Sodium Chloride for Injection.
• Alcohol hand rub
• Sterile intravenous giving set.
• Infusion pump, stand/rucksack.

Step 2 - Aseptic handwash

Step 3 - Prepare equipment

• Clean & disinfect trolley/tray surface.
• Open sterile dressing pack/towel onto trolley/tray surface to create an aseptic field.
• Open equipment needed onto aseptic field.
• Wearing sterile gloves spike bag of PN and prime giving set.
• Programme pump.

Step 4 - Prepare patient and catheter

• Open sterile towel & place under catheter.
• Remove any outer dressing covering the catheter (if used) & port protector.

Step 5 - Access catheter

• Put on sterile gloves.
• Prime pre-filled syringe.
• Disinfect the Bionector (15 seconds using friction).
• Attach syringe to the Bionector and flush catheter using push pause flushing and positive pressure clamping technique.
• Attach giving set.

Step 6 – Start infusion and secure catheter

• Ensure giving set & catheter clamps are released.
• Start infusion at prescribed rate.
• Remove gloves.
• Secure catheter.

Clear away and social handwash—PN administration technique and CVL Care

Procedure for Disconnecting TPN

(All procedures are based on the BAPEN Parenteral Support Catheter Guidelines 2018)

Key Principles of Care and Management of Central Venous Catheters:

• Identify the key parts
• Ensure no touching of any key parts during the procedure
• Apply alcohol hand rub directly to hands during the procedure if touching any non-sterile contents and/or if there is any risk of contamination

Social Hand wash

Step 1 - Gather and check equipment

• Trolley/tray
• Detergent wipes (or paper towel, soap and water)
• 2% CHG & 70% IPA disinfectant wipes
• Sterile dressing-pack
• Gloves
• 10mL pre-filled syringe(s) 0.9% Sodium Chloride for Injection
• 10ml syringe and filtered needle
• Taurolock locking agent
• Alcohol hand rub
• Parafilm
• Sharps bin

Step 2 - Aseptic handwash

Step 3 - prepare equipment

• Clean & disinfect trolley/tray surface
• Open sterile dressing pack/towel onto trolley/tray surface to create an aseptic field
• Open equipment needed onto aseptic field

Step 4 - Prepare patient and catheter

• Switch off pump and close clamp on giving set
• Clamp catheter

Step 5 – Draw up locking agent

• Put on gloves
• Attach needle to 10ml syringe
• Carefully open up Taurolock ampule (check for expiry date)
• Draw up 0.8mls of Taurolock and remove needle, place back on trolley
• Remove gloves and clean hands

Step 6 - Access catheter

• Put on gloves
• Disconnect giving set from needle-free device
• Disinfect needle free device
• Prime pre-filled syringe(s)
• Attach syringe(s) to needle-free device and flush catheter using push pause flushing and positive pressure clamping technique
• Disconnect syringe and attaché syringe with locking agent. Instil into lumen and clamp under positive pressure
• Attach Parafilm

Step 7 - Secure catheter

• Remove gloves
• Secure catheter

Clear away and social handwash—changing catheter dressing

This procedure should not be incorporated into any other procedure in which the catheter hub is manipulated so keeping the risk of cross contamination to a minimum. Dressings need to be changed every 7 days, if they are soiled or have become loose.

A fabric island type dressing is recommended if there is discharge/infection from the exit site – this will be changed more frequently on advice from the nutrition team.

Social handwash

Step 1 - Gather and check expiry dates of equipment

• Trolley/tray.
• Detergent wipes (or paper towel, soap and water).
• 2% CHG & 70% IPA disinfectant wipes.
• Sterile dressing-pack.
• Sterile Gloves.
• Single use 2% CHG & 70% IPA sponge applicator(s).
• Sterile dressing(s) of choice.
• Alcohol hand rub. 

Step 2 - Aseptic handwash

Step 3 - Prepare equipment

• Clean & disinfect trolley/tray surface.
• Open sterile pack/towel and create an aseptic field.
• Open equipment needed onto aseptic field.

Step 4 - Prepare patient and catheter

• Remove existing dressing(s) with apeel

Step 5 - Access catheter

• Put on sterile gloves.
• Disinfect skin with single-use 2% CHG & 70% IPA sponge applicators (using one for the site and the second for the wider skin area (if the line itself is soiled a third is required to clean the line).
• Apply dressing with a secure loop.

Step 6 - Secure catheter

• Remove gloves.
• Secure catheter (as recommended by HPN Centre).

Clear away and social hand wash—Changing Bionector

A Bionector must be changed once a week, for this reason many people choose to do this after they have completed the weekly central line dressing.

Social handwash

Step 1 - Gather and check expiry dates of equipment

• Trolley/tray.
• Detergent wipes.
• 2% CHG & 70% IPA disinfectant wipes.
• Sterile dressing-pack.
• Sterile Gloves.
• Bionector.
• Port Protector.
• Alcohol hand rub. 

Step 2 - Aseptic handwash

Step 3 - Prepare equipment

• Clean & disinfect trolley/tray surface.
• Open sterile pack/towel and create an aseptic field.
• Open equipment needed onto aseptic field.

Step 4 - Prepare patient and catheter

• Open sterile dressing towel and place under catheter.

Step 5 - Access catheter

• Put on sterile gloves.
• Disinfect (15 seconds using friction) Bionector.
• Remove Bionector.
• Disinfect the outside of the hub only.
• Replace Bionector swiftly.
• Fasten port protector.

Step 6 - Secure catheter

• Remove gloves.
• Secure catheter.

Clear away and social hand wash—additional activities

Baths/showers

When bathing and showering we would recommend covering the central line dressing – or minimising how wet it gets. If the dressing becomes wet or dislodged during bathing, it must be changed when out of the bath/shower and dry. If bath water is contaminated with poo, please change the Bionector and port protector (if they get wet). If the dressing and central line gets wet during bath time please change dressing immediately.

Swimming

We do not advise letting the central line being submerged and therefore do not recommend swimming in any circumstance

Pets

Pets can be great companions. If you do keep pets in the home it is essential that no Pets are allowed in the child’s bedroom or in the area that the PN procedures are undertaken.

Please always discuss pets with the Nutrition team.

Holidays

Holidays and short breaks are great for families and we like to support these when we can. If you require a change in delivery address or days, you need to give your home care company at least 6 weeks’ notice. The home care company will deliver to any address in the UK and to any port. The PN will be packaged and documents provided for flights and overseas travel.

It is your responsibility, to source a fridge that can be used, as a dedicated PN fridge at your holiday destination.

If you are planning on travelling abroad, it is important that you discuss your travel plans with the Nutrition team before booking. It is important to think about the temperature/heat of your destination, the health care service provision and travel time.

We will provide you with a letter documenting the equipment that you require for travel and a fit to travel document. These documents can only be provided once your plans have been discussed and within a month pre travel.

It is always essential that you have travel insurance for overseas travel.

Remember your hand held letter.

School (training and support)

We will provide or help organise the necessary training for places of education. Depending upon the age and needs of your child, we will provide documents to support an Education Health Care Plan and extra support at school.

Please let us know as soon as you are notified with your child’s school placement, so that we can make contact and start arrangements. If you plan on changing schools please let us know as soon as possible to avoid delays.

Care packages

Continuing care will be discussed prior to your discharge. We will always refer and provide supporting statements for this process.

Children with Disability Teams can be very helpful in some circumstances. Referrals will always be discussed.

Some hospices provide respite and care packages for children requiring PN; we will discuss this as part of the discharge process. Please do not hesitate to contact us for further information.

Activity opportunities

Over the wall is a residential camp facility – an amazing opportunity for young people to take part in a wide range of activities in a safe environment with health professionals to provide care needs. https://www.otw.org.uk/

Please ask the nutrition team for more information.

Home parenteral nutrition training programme

Name of Patient:__________________________

Patient Hosp Number:__________________________

Patient D.O.B:__________________________

Parent/Carer Name:__________________________

Aim: The patient/carer will acquire the knowledge and skills necessary to safely and effectively administer parenteral nutrition and care for the central venous catheter (line). 

Parent/carer home parenteral nutrition agreement

Name of Patient:__________________________

Patient Hosp Number:__________________________

Patient D.O.B:__________________________

Patient Consultant:__________________________

My child, ___________________________ has been prescribed Home Parenteral Nutrition (HPN).

I have undertaken the appropriate training for either the administration of HPN and emergency care or stand-alone emergency care. I have had the opportunity to discuss the cautions and risks associated with the use of HPN:

• Central line sepsis and the risks associated with not recognising an infection quickly and acting appropriately (contacting and attending hospital). Any temperature 38 and above must be treated as a central line infection until proved otherwise.
• Re-bound Hypoglycaemia
• Parenteral Nutrition related Liver Disease and the importance of trophic feeds
• Central Line problems and accidents (line displacement, line breakage or damage)
• Central Line access problems (line blockages and replacements)

I have agreed to accept the responsibility and feel competent in the administration of home parenteral nutrition and emergency central line care.

I have agreed to accept the responsibility and feel competent in emergency central line care.

I have been given written guidelines to follow regarding my child’s treatment that I have understood. If I have any queries or do not understand any aspect of my child’s treatment, I will contact the CNS, the Ward, home care team or the on call registrar for advice.

Parent’s Name -                                              Parents Signature –

Registered Nurse -                                          Registered Nurse Signature –

Pharmacist Name -                                          Pharmacist Signature –

Consultants Name -                                         Consultant Signature –

Date -

What is the Social Communication Pathway (SCD)?

The SCD Pathway involves assessment, diagnosis, support and intervention for children referred to the Child Development Service who present with social communication difficulties. We hope to gain an understanding of your child’s strengths and difficulties across three areas: social interaction, social communication and social imagination. Following the assessment, we will decide if a diagnosis of Autism Spectrum Disorder (ASD) will be useful in explaining your child’s pattern of difficulties.

What is Autism Spectrum Disorder (ASD)?

ASD is a developmental disability that affects how people perceive the world and interact with others. Individuals with ASD have difficulties with social interaction, social communication and social imagination. For more information on ASD visit the National Autistic Society www.autism.org.uk 

Why do I need to give consent? 

We require consent to ensure that you understand and are happy with why we are assessing your child and what will happen during, and after, the assessment. We also seek consent for us to gain and share information with other agencies (e.g. school) that support you and your child, so we can understand your child’s strengths and difficulties across different contexts. If you are unsure about giving consent, please contact us to discuss this further as this may impact on whether the assessment goes ahead. 

What assessments may be completed on the SCD Pathway?

Families may be invited to a number of different appointments. We may also liaise with your child’s school/nursery to gain further information. Your child’s assessment will vary depending on their individual needs, which may include:

• Developmental history: A structured interview with parents about your child asking questions about their birth, development and medical history focussing on communication and social interaction.
• Structured Diagnostic Interview: A structured interview with parents which ask specific questions about your child’s social communication skills.
• Speech and Language Therapy (SLT) assessment: An assessment of your child’s communication skills may be carried out through a variety of tasks and activities.
• Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child.
• Nursery Questionnaires: To gain additional information about your child within the school/nursery context we will ask a member of staff who knows your child well to complete a series of questionnaires about your child’s social communication, learning and behaviour.

Who is involved in assessing my child on the SCD Pathway

• Paediatrician: A team of Paediatricians with a special interest in Social Communication Disorders
• Speech and Language therapist: A team of specialist Speech and Language Therapists experienced in the assessment of social communication difficulties. 

Are any other agencies involved?

We will normally contact your child's school/ nursery and any other professionals involved in your child’s care. This helps us to get a fuller understanding of their strengths and difficulties across different settings. 

Who should I contact for further information? 

The SCD Pathway Coordinator is the main point of contact for all queries regarding appointment times, cancellations etc. Cheyne SCD Coordinator: 020 3315 3121

What will happen after the assessment? 

• A report summarising the assessment findings will be sent out and shared with other agencies with your consent (e.g. Nursery).
• We will refer your child to other services if required.
• If your child receives a diagnosis of ASD you will be invited to our post-diagnosis support groups. 

Contact Us:

Cheyne Child Development Service
Chelsea and Westminster Hospital
Doughty House
369 Fulham Road
London
SW10 9NH

Main Reception:
020 3315 6488

SCD Coordinator:
020 3315 3121

Clinical Nurse Specialist:
ccds.cnsteam@nhs.net

For more information (Local Offer):

• Kensington and Chelsea
• Westminster
• Hammersmith and Fulham

What is the ASD Pathway?

The ASD Pathway involves assessment, diagnosis, support and intervention for children referred to the Child Development Service who present with social communication difficulties. We hope to gain an understanding of your child’s strengths and difficulties across three areas: social interaction, social communication and social imagination. Following the assessment, we will decide if a diagnosis of Autism Spectrum Disorder (ASD) will be useful in explaining your child’s pattern of difficulties.

What is Autism Spectrum Disorder (ASD)?

ASD is a developmental disability that affects how people perceive the world and interact with others. Individuals with ASD have difficulties with social interaction, social communication and social imagination. For more information on ASD visit the National Autistic Society www.autism.org.uk

How long will the assessment take?

It is difficult to give an exact time because each child requires a different combination of assessment appointments. Please contact the ASD coordinator for further information on your child’s waiting time.

Why do I need to give consent?

We require consent to ensure that you understand and are happy with why we are assessing your child and what will happen during, and after, the assessment. We also seek consent for us to gain and share information with other agencies (e.g. school) that support you and your child, so we can understand your child’s strengths and difficulties across different contexts. If you are unsure about giving consent, please contact us to discuss this further as this may impact on whether the assessment goes ahead.

What assessments will be completed on the ASD Pathway?

Families may be invited to a number of different appointments. These are detailed below. Please note that not all assessments will be required. Your child’s assessment will vary depending on their individual needs. We may also liaise with your child’s school/nursery to gain further information:

• Developmental history: A structured interview with parents about your child asking questions about their birth, development and medical history focussing on communication and social interaction.
• Structured Diagnostic Interview: A structured interview with parents which ask specific questions about your child’s social communication skills.
• Cognitive Assessment: A standardised assessment of your child’s thinking and learning skills.
• Speech and Language Therapy (SLT) assessment: An assessment of your child’s speech and language skills with a Speech and Language Therapist through a variety of tasks and activities.
• Autistic Diagnostic Observation Schedule (ADOS): A structured play and question-based assessment completed with your child.
• School/ Nursery Questionnaires: To gain additional information about your child within the school/nursery context we ask a member of staff who knows your child well to complete a series of questionnaires about your child’s social communication, learning and behaviour.
• School Observation: An observation of your child within the classroom setting to observe their social communication with peers. We also meet with their class teacher/familiar adult to complete a questionnaire to gain an in-depth understanding of their social communication within the school context. 

Who is involved in assessing my child on the ASD Pathway?

• Paediatrician: A team of community paediatricians with a special interest in Social Communication Disorders
• Clinical Psychology: A team of Clinical Psychologists and an Assistant Psychologist who support the assessment of social communication difficulties for school-age children and offer post- diagnostic support.
• Speech and Language therapist: A team of specialist Speech and Language Therapists experienced in the assessment of social communication difficulties.

Are any other agencies involved?

We will normally contact your child's school/ nursery and any other professionals involved in your child’s care. This helps us to get a fuller understanding of their strengths and difficulties across different settings.

Sometimes we will ask one of the specialist teachers at the Kensington and Chelsea Early Years and Autism Outreach team or the Westminster Outreach team to liaise with school on our behalf.

Who should I contact for further information?

The ASD Pathway Coordinator is the main point of contact for all queries regarding appointment times, cancellations etc.

• Woodfield Road ASD Coordinator: 0207 266 8776
• Cheyne ASD Coordinator: 020 3315 3121

What to expect when your child is referred for an ASD assessment:

Contact Us:

Cheyne Child Development Service
Chelsea and Westminster Hospital
Doughty House
369 Fulham Road
London
SW10 9NH

Main Reception: 020 3315 6488
ASD Coordinator: 020 3315 3153

• Cheyne Child Development Service page

Parent Carer Forums:

• Kensington & Chelsea: www.fulloflifekc.com
• Westminster: www.wppg.org.uk/
• Hammersmith & Fulham: www.parentsactive.org.uk

Local offer information:

All councils are now required to have a Local Offer on their website. This provides information on the local services and support available to children and young people with special educational needs and/or disabilities (SEND) aged 0-25 and their families: 

• Kensington & Chelsea: www.rbkc.gov.uk/localoffer
• Westminster: www.localoffer.westminster.gov.uk
• Hammersmith & Fulham: www.lbhf.gov.uk/localoffer

If you live outside of these areas, you can find your area’s Local Offer on your council’s website.

Who’s Who

Clinical Nurse Specialist

The specialist nursing team have experience of community paediatric nursing, and health visiting, this includes children with special needs. They will work together with your family health visitor or school nurse to help you access the community services and support for your child. They mainly work with children aged 0-6 although are available for advise with older children.

They can offer telephone advice and clinic: they are contactable by email: ccds.cnsteam@nhs.net , or contact number – 02033156470

Community Paediatrician

Paediatricians are doctors who have specialised in Children’s Medicine. Community Paediatricians have specialised in the care assessment and diagnosis of Children with developmental problems or difficulties.

Physiotherapist

Physiotherapy can enable your child to develop their motor skills and physical independence.

Our service aims to:

• To provide initial and on- going assessment to identify immediate physiotherapy intervention needs and early risk factors which could limit physical development in the future.
• To provide physiotherapy interventions in accordance with best practice and professional standards that results in improved physical movement.

 Interventions may include:

• Neurodevelopmental / physiotherapeutic handling and exercise
• Provision of home, nursery and school exercise and activity programmes
• Prescription / provision and monitoring of equipment for mobility and postural management
• Education / training to carers to ensure an understanding of and the integration of principals of physiotherapy into all relevant aspects of the child’s life. Carers include guardians, parents / family, nursery school and college support and teaching staff
• Risk assessment for all areas of life where the physiotherapist has responsibility for the physical management of the child
• Neuro-orthopaedic surveillance clinics, jointly with Chelsea and Westminster Extended Scope Practitioners, following guidelines for monitoring hip and spine development
• Orthotic clinics, jointly with the orthotics for assessment and provision of splints and insoles. 

The physiotherapy team works together with the family, schools and other professionals involved in the child’s care. Our physiotherapists have a wide knowledge and experience of typical and atypical physical development in children.

Our team can see you in a variety of settings including the clinic, at home and at school.

Music Therapist

Music therapy uses shared music making as a way of supporting children who may have communication, social, physical, or emotional difficulties. Referral to music therapy can be made for children up to the age of 5 years and 11 months.

Speech and Language Therapist

The Speech and Language Therapist looks at your child’s communication including;

• Understanding
• Play and Social Development
• All aspects of communication including looking, pointing., gestures as well as speech

The speech and language therapist will do this by asking how your child communicates with you and by observing their play. They may ask your child to carry out some specific activities using familiar toys and pictures.

Following assessment, appropriate therapy input, if needed, will be discussed and planned with you;

Speech and language therapy provide a service to pre-school children with speech, language, communication and/or swallowing difficulties.

If your child is school-aged please speak to the Special Educational Needs Coordinator (SENCO) at your child's school about supporting your child's language and communication skills.

Clinical Psychologist

The Psychology team at Cheyne are part of the multidisciplinary assessments and provide support and advice to children, young people and their families.

This may involve:

• Direct assessment of development and learning (cognitive) abilities.
• Discussion and advice regarding your child’s emotional, social and behavioural development.
• Discussion and advice regarding family relationships.

The team use a range of assessment methods such as play, conversation, structured assessments, observations (in clinic and at school) and questionnaires.

In terms of support following assessment, the Clinical Psychology team offer groups for parents, consultation to staff working with children and short-term individual interventions. We typically offer support in relation to understanding diagnosis, behaviour, emotional development, sleep and feeding.

Occupational Therapist

Occupational therapists assess and treat children who have delay or difficulties that effect their ability to independently achieve everyday occupational activities. Occupational therapist have expertise in;

• Sensory development
• Motor (movement) skills
• Cognitive (learning) skills
• Psychological and emotional areas
• Social skills
• Play development

The occupational therapist will assess your child by;

• Discussing your concerns
• Observing play and activity
• Using standard assessments

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community.

Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties.

Additional Information

Parent forums are parent led organisations that provide information and support to families who have a child/young person who has special educational needs and /or Disability. This includes children referred to the Child development service pre and post diagnosis.

• Hammersmith and Fulham: Parents Active: www.parentsactive.org.uk
• Kensington and Chelsea: Full of Life www.fulloflifekc.com
• Westminster: Make it Happen www.wppg.org.uk

SEND Local Authority Offer

All councils now have to provide information on services and support available to children and young people with special educational needs and/or disabilities (SEND) aged 0-25 via the local offer website

• Royal Borough of Kensington and Chelsea website www.rbkc.gov.uk/localoffer
• London Borough of Hammersmith and Fulham website www.Ibhf.gov.uk/localoffer
• Westminster City Council website www.localoffer.westminster.gov.uk

Cheyne Child Development Service

Our service provides specialist assessment and healthcare therapy for children significant developmental needs, including those who are likely to have difficulty accessing learning.

The service is committed to a child and family centered approach, and is organized into Two Clinics based;

The Cheyne Child Development Service

Chelsea & Westminster Hospital

Doughty House

 369 Fulham Road

London SW10 9NH

T: 020 3315 6488

Parkview Health and Wellbeing Centre

First Floor

Cranston Court

56 Bloemfontein Road

London W12 7FC

T: 020 3704 6060

For questions about your appointment or waiting time: contact the appointments coordinator on 020 3315 3121

For questions about the assessment, what to tell your child and resources whilst you wait contact the reception on 0203 315 6488

Why is the medical necessary?

A medical examination has been requested as there have been concerns about the welfare of your child.

What happens at the Child Protection Medical?

• The doctor, with attending social worker will see you and your child in the Children’s Outpatient’s department. The doctor may want to speak to the social worker alone at the beginning of the appointment.
• The doctor will then have a discussion with you about your child's current health, past medical history and development, and will conduct an examination of your child.
• The examination will be carried out by a children’s doctor (Paediatrician) who has experience in conducting such assessments
• The doctor will explain to you and your child what will happen.
• The entire assessment should take around 1 to 1½ hours, but may be longer if we need to do assessments for more than one child.

Discussions

As the doctor wants to know about the overall health of your child, you will be asked about:

• Any illnesses or accidents your child has had
• Their birth history
• Development
• Immunisations
• Allergies
• Any medication
• Behaviour and progress at school
• Their day to day health
• Family history
• Social history

What happens during the examination?

• Your child will have a full physical examination which requires them to be fully undressed, in a respectful way. A chaperone will be present during the examination. If your child has any obvious injuries these will be noted, measured and drawn in the child’s records.
• The doctor may request for photographs to be taken of any marks or injuries seen on the child during the examination
• More specific investigations such as blood tests, scans or X-rays may need to be done. These will be explained and discussed with you.
• Your child will also be told that the examination can be stopped at any time if they/ you wish.

What happens next?

• The doctor will explain the findings of the assessment to you and your child (depending on your child’s age and understanding) as well as to the social worker.
• The doctor will advise you if any further medical treatment is necessary.
• The doctor will write a report which will be sent to your child's general practitioner, health visitor/school nurse, social worker and police officer (if police are involved).
• A copy of the report will also be made available to you.

What happens if you refuse to let your child be examined?

• Usually a child's parent is asked for consent for the examination. If consent is not given and if the social worker and/or police feel an examination is in your child's best interest, they may need to discuss this further with you.
• Sometimes young people may be able to give their own consent and the doctor will decide if this is possible.

We appreciate that having a child protection medical can be stressful for the family. It is important that:

• You understand what is happening.
• You and your child's views are listened to.
• If required, you will be advised on the best way you and your child can be supported during this time.

This information has been developed for parents and carers of children awaiting an multidisciplinary social communication assessment.

We have put together some information for you to support your child’s development while you wait.

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

Why your child has been accepted for a multidisciplinary social communication assessment

• Parents may have asked for the referral following concerns of their child’s development including  some  questioning if their child`s has autism
• Communication: Some children are referred because they have difficulties with their speech and language or other aspects of their communication. For example, they may be delayed in learning to speak, or may not use non-verbal gestures.
• Social Interaction: Children are often referred because of difficulties interacting with others. They may find it difficult to make friends or engage in social conversations, they may misunderstand social cues, or may appear uncomfortable, awkward or anxious in social situations.
• Other behaviours: Children may be referred because they show certain behaviours or interests. They may flap their hands, have unusual interests, or want to follow certain routines. Others have sensory difficulties and are over-sensitive to sounds, smells or textures.
• Concerns by professionals including speech therapists, health visitors, nursery and school staff –of your child’s delayed development and or related difficulties – sometimes questioning if these might be explained by a diagnosis of autism spectrum disorder

Expected outcomes of assessment 

• Getting a diagnosis for a child can be helpful, as it enables parents, as well as others, to understand and support your child better. 
• Documentation from your child’s assessment should include explanation of  your child’s individual strengths and difficulties
• The assessment will aim to advice on the support  your child might need to help them achieve their maximum potential
• Possible outcome of assessment might include a diagnosis of, Autism spectrum disorder ( ASD), developmental delay or a specific language difficulty
• You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below). 

Signs of autism in children

NHS website: Click here

What is autism

National autistic society: Click here

Developmental language disorder

Developmental Language Disorder (ican.org.uk): Click here

What you can do whilst waiting for assessment

• Access a nursery or school place for your child
• Access support from speech and language therapy assessment – please see additional information under communication websites towards the end of this document 
• Encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy. You can also look at the website: https://hungrylittleminds.campaign.gov.uk/ which has lots of ideas/activities to support play and communication
• Accessing support for your child’s individual needs, including behaviour, sleep, feeding, and toileting, advice. We have included some advice in this booklet and would suggest for you to look at this before discussing any further support with the team at your child’s assessment
• Before your child’s assessment you will be offered contact from the specialist nursing team, if you need to contact them beforehand then please email ccds.cnsteam@nhs.net or call 0203 315 3121
• You can access support from your local Early intervention social care team, Cheyne specialist nurses can help with this: ccds.cnsteam@nhs.net or call 0203 315 6470

Benefits of nursery or school before assessment 

• Accessing nursery placement will help provide your child with additional play opportunities including access to indoor and outdoor activities.
• Nursery provides a routine and structure to your child’s day. This routine should help your child feel more confident and secure, in control of their feelings and is great preparation for school readiness.
• Attending nursery provides ongoing evidence of your child’s strengths, progress, and challenges in areas they may need support with.
• Nursery will help with your child’ social communication assessment –including additional reports on their progress and interaction with children of similar age.

Accessing nursery or school placements

• 2 year old offer: some children will qualify for 15 hours free nursery placement, for further information: https://www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds (see local SEND offer for list of available nurseries; you can also contact your Health visitor for support with this or the Cheyne specialist nursing team ccds.cnsteam@nhs.net)
• 3-4 year old offer: All parents / carers with a child aged 3-4 years are entitled to receive 15 hours (see local SEND offer for list of available nurseries)
• School placement: mainstream and specialist –you will need to apply to your local education department by the 15th January to access placement for the following September (see local SEND offer for list of available schools)

Additional support in nursery and school

If you are concerned about your child’s progress at nursery or school, speak to their nursery key worker, or class teacher or the school/ nursery Special Educational Needs Coordinator (SENDCO). You might want to ask them the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress?
• They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.
• If for some reason you or your child’s nursery or school , feels your child might need additional support to access education then you can access further information from the SEND local offer or Cheyne specialist nurse team, ccds.cnsteam@nhs.net

Support with behaviour

If you are struggling with your child’s behaviour or other specific issues: Speak to your Health visitor or contact the Cheyne specialist nursing team ccds.cnsteam@nhs.net. We would advise for:

• Discussion with your child’s speech therapist to further help guide you with helpful communication strategies for your individual child- including special play time advice
• Access advice from the following NHS and Family lives websites www.nhs.uk/conditions/baby/babys-development/behaviour/dealing-with-child-behaviour-problems/ and www.familylives.org.uk/advice/early-years-development/behaviour/
• Contact your local children’s centre or Health visitor for information on additional  parenting courses in your area

Sleep Advice 

We understand how difficult life can be when your child has a sleep issue and how there are many factors which can be can affect children’s sleep. We would advise you to access advice sleep guidance whilst you are waiting for assessment.

Further support can be discussed at your child’s assessment. Please see the following links:

• https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/sleep-hygiene-children/
• https://sleepcouncil.org.uk/advice-support/sleep-hub/family-matters/children-with-additional-needs/
• https://www.familylives.org.uk/advice/your-family/special-educational-needs/sleep-advice-for-parents-with-disabled-children/

Support with Feeding Concerns 

• If you have concerns for your child’s growth we would advice for you to access support from your child’s health visitor for weight and height measurement and discussion of further support as required
• If you have concerns your child is a very fussy eater and their diet is often restricted to certain foods, then you can access advice from the infant and toddler forum – with further support discussed at your child’s assessment: https://infantandtoddlerforum.org/health-and-childcare-professionals/factsheets/

Toileting Advice 

• Toileting- we would advice you to access advice from the following Eric – website – with further support discussed at you child’s assessment https://www.eric.org.uk/potty-training-children-with-additional-needs
• If your child is aged 4 plus and not yet fully toilet trained, contact your child’s Health visitor or specialist Cheyne specialist nurse, ccds.cnsteam@nhs.net –you should be eligible for support with free nappies until your child is successfully toilet trained  

SEND Local Offer 

Each local council has a SEND Offer for children with disabilities and complex health needs. The local offer aims to bring together useful information across education, health and social care within one website 

Look on your council’s Local SEND Offer website to find out what other support or services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them. 

Local Services: Kensington and Chelsea

Kensington and Chelsea residents: www.rbkc.gov.uk/localoffer

Kensington and Chelsea Social Care Disabled Children’s Service

Support from Kensington and Chelsea Disabled Children’s Service is provided by the Social Work Team and the Early Intervention & Support Team.

The Early Intervention & Support Team

This team can support families with children aged 0- their 5th birthday.

• To receive support from this team the child must have a diagnosis or been referred to the Child Development clinics with a likelihood of a diagnosis.
• Once the referral has been accepted, the Practitioner will visit to look at the families needs.
• They will have a range of Interventions and to offer to the family. These include support with Autism Spectrum Disorder awareness, Fussy Eating support, Sleep and behavioural advice, Health and Safety in the home, support with accessing nursery or school and many more. To access the team contact Cheyne specialist nursing team email ccds.cnsteam@nhs.net or contact number 0203 315 6470

Full of Life

• T: 0208 962 9994
• Email: info@fulloflifekc.com
• Website: www.fulloflifekc.com

Local Services: Westminster 

Westminster residents:

https://fisd.westminster.gov.uk/kb5/westminster/fis/localoffer.page?localofferchannel=0

For more info search “SEND Local Offer Westminster” in your internet search engine: https://fisd.westminster.gov.uk/kb5/westminster/fis/localoffer.page?localofferchannel=0

Westminster Social Care Disabled Children’s Service

Support from Kensington and Chelsea Disabled Children’s Service is provided by the Social Work Team, and the Early Intervention & Support Team

The Early Intervention & Support Team 

• This team will support families with children aged 0- their 5th birthday .
• To receive support from this team the child must have a Diagnosis, or been referred to the Child Development clinics with a likelihood of a Diagnosis.
• Once the referral has been accepted, the Practitioner will visit to look at the families needs.
• They will have a range of Interventions and to offer to the family. These include support with Autism Spectrum Disorder awareness, Fussy Eating support, Sleep and behavioural advice, and Health and Safety in the home, support with accessing nursery or school and many more
• To access the team contact Cheyne specialist nursing team email ccds.cnsteam@nhs.net or contact number 0203 315 6470

Make it Happen 

This information has been developed for parents and carers of children awaiting an multidisciplinary social communication assessment.

We have put together some information for you to support your child’s development while you wait.

There are many things that parents and carers can be doing to help support their child’s development and many resources available for children and their families.

Why your child has been accepted for a multidisciplinary social communication assessment

• Parents may asked for the referral following concerns of their child’s development including some questioning if their child`s has autism
• Communication: Some children are referred because they have difficulties with their speech and language or other aspects of their communication. For example, they may be delayed in learning to speak, or may not use non-verbal gestures.
• Social Interaction: Children are often referred because of difficulties interacting with others. They may find it difficult to make friends or engage in social conversations, they may misunderstand social cues, or may appear uncomfortable, awkward or anxious in social situations.
• Other behaviours: Children may be referred because they show certain behaviours or interests. They may flap their hands, have unusual interests, or want to follow certain routines. Others have sensory difficulties and are over-sensitive to sounds, smells or textures.
• Concerns by professionals including speech therapists, health visitors, nursery and school staff –of your child’s delayed development and or related difficulties – sometimes questioning if these might be explained by a diagnosis of autism spectrum disorder

Expected outcomes of assessment 

• Getting a diagnosis for a child can be helpful, as it enables parents, as well as others, to understand and support your child better. 
• Documentation from your child’s assessment should include explanation of  your child’s individual strengths and difficulties
• The assessment will aim to advice on the support your child might need to help them achieve their maximum potential
• Possible outcome of assessment might include a diagnosis of, Autism spectrum disorder ( ASD), developmental delay or a specific language difficulty
• You may find it helpful to read about autism spectrum disorder or other difficulties that your child is experiencing (see information section below).

Signs of autism in children

What is autism

National autistic society: Click here

Developmental language disorder

Developmental Language Disorder (ican.org.uk): Click here

What you can do whilst waiting for assessment

• Access a nursery or school place for your child
• Access support from speech and language therapy  assessment – please see additional information under communication websites towards the end of this document  
• Encouraging you child’s play skills under the section on SEND/Health/Speech and Language therapy. You can also look at the website: https://hungrylittleminds.campaign.gov.uk/ which has lots of ideas/activities to support play and communication
• Accessing support for your child’s individual needs, including behaviour, sleep, feeding, and toileting, advice. We have included some advice in this booklet and would suggest for you to look at this before discussing any further support with the team at your child’s assessment.
• Before your child’s assessment you will be offered contact from the specialist nursing team, if you need to contact them beforehand then please email ccds.cnsteam@nhs.net or call 0203 315 6470
• You can access support from your local Early intervention social care team, Cheyne specialist nurses can help with this: ccds.cnsteam@nhs.net or call 0203 315 6470

Benefits of nursery or school before assessment 

• Accessing nursery placement will help provide your child with additional play opportunities including access to indoor and outdoor activities
• Nursery provides a routine and structure to your child’s day. This routine should help your child feel more confident and secure, in control of their feelings and is great preparation for school readiness
• Attending nursery provides ongoing  evidence of your child’s  strengths, progress, and challenges in areas they may need support with.
• Nursery will help with your child’ social communication assessment –including additional reports on their progress and interaction with children of similar age.

Accessing nursery or school placements

• 2 year old offer: Some children will qualify for 15 hours free nursery placement. For further information: https://www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds see local SEND offer for list of available nurseries; you can also contact your Health visitor for support with this or the Cheyne specialist nursing team ccds.cnsteam@nhs.net
• 3-4 year old offer: All parents/carers with a child aged 3-4 years are entitled to receive 15 hours; see local SEND offer for list of available nurseries
• School placement: Mainstream and specialist – you will need to apply to your local education department by the 15th January to access placement for the following September; see local SEND offer for list of available schools

Additional support in nursery and school

If you are concerned about your child’s progress at nursery or school, speak to their nursery key worker, or class teacher or the school/ nursery Special Educational Needs Coordinator (SENDCO). You might want to ask them the following questions: 

• What progress is your child making?
• What support is being put in place for your child?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress?
• They may also be able to advise you on what approaches they have found useful at nursery or school, which you can try at home.
• If for some reason you or your child’s nursery or school , feels your child might need additional support to access education then you can access further information from the SEND local offer or Cheyne specialist nurse team, ccds.cnsteam@nhs.net

Support with behaviour

If you are struggling with your child’s behaviour or other specific issues: Speak to your Health visitor or contact the Cheyne specialist nursing team ccds.cnsteam@nhs.net. We would advise for:

• Discussion with your child’s speech therapist to further help guide you with helpful communication strategies for your individual child- including special play time advice
• Access advice from  the following NHS and Family lives websites www.nhs.uk/conditions/baby/babys-development/behaviour/dealing-with-child-behaviour-problems/
• www.familylives.org.uk/advice/early-years-development/behaviour/
• Contact your local children’s centre for information on additional parenting courses in your area: For more information you can contact: Ushma Bal (Parenting programme Manager) 07713 077 585 or email; ushma@upg.org.uk  

Sleep advice 

We understand how difficult life can be when your child has a sleep issue and how there are many factors which can be can affect children’s sleep  We would advise you to access advice  sleep guidance  whilst you are waiting for assessment. Further support can be discussed at your child’s assessment.

Please see the following links:

• Sleep hygiene advice GOSH: https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/sleep-hygiene-children/
• https://sleepcouncil.org.uk/advice-support/sleep-hub/family-matters/children-with-additional-needs/
• https://www.familylives.org.uk/advice/your-family/special-educational-needs/sleep-advice-for-parents-with-disabled-children/

Support with feeding concerns 

• If you have concerns for your child’s growth we would advice for you to access support from your child’s health visitor for weight and height measurement and discussion of further support as required
• If you have concerns your child is a very fussy eater and their diet is often restricted to certain foods, then you can access advice from the infant and toddler forum – with further support discussed at your child’s assessment: https://infantandtoddlerforum.org/health-and-childcare-professionals/factsheets/

Toileting advice

• Toileting- we would advice you to access advice from the following Eric – website – with further support discussed at you child’s assessment https://www.eric.org.uk/potty-training-children-with-additional-needs
• If your child is aged 4 plus and not yet fully toilet trained, contact your child’s Health visitor or specialist Cheyne specialist nurse, ccds.cnsteam@nhs.net –you should be eligible for support with free nappies until your child is successfully toilet trained

SEND local offer 

Each local council has a  SEND Offer  for children with disabilities and complex health needs .The local offer aims to bring together useful information across education, health and social care within one website.

Look on your council’s Local SEND Offer website to find out what other support or services are available locally. Many services are inclusive and do not require a diagnosis to be able to access them. 

Local Services: Hammersmith and Fulham 

For more info search “SEND Local Offer Hammersmith and Fulham” in your internet search engine: www.lbhf.gov.uk/localoffer

Stephen Wiltshire Centre

The Stephen Wiltshire Centre is a purpose-built specialist centre for children with special educational needs and/or disabilities (SEND) and their families, who live in Hammersmith & Fulham. Your child doesn’t need a diagnosis to access support.

They operate a duty phone line between the hours of 9am - 4pm, Monday to Friday. The duty line is available for enquiries of accessing support including general support and signposting, to stay and  play groups, nursery  and school  and short term support from individual integrated key support workers.

To contact the duty line, please call 0208 753 4443 or contact the Cheyne nursing team ccds.cnsteam@nhs.net or 0203 315 6470

• Email: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London SW6 6JR

Parents Active

Is a local parent led organisation supporting parents of children and young people with disability. This includes a support network for parents to gain and share information. Parents are kept informed through coffee mornings, events, website, training, workshops and newsletters.

• Website: https://www.parentsactive.org.uk/
• T: 020 8 748 5168 
• Email: info@parentsactive.org.uk

Communication websites 

• Speech and language therapy website: https://www.clch.nhs.uk/services/speech-and-language-therapy-children
• NSPCC’s ‘Look, Say, Sing, Play’ campaign’ with the following link: https://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/look-say-sing-play/sign-up
• Vroom: Boost your child's learning with Vroom's fast and fun tips to your phone , visit the website: https://www.vroom.org
• The Hungry Little Minds campaign provides lots of ideas that can help boost your child’s learning. https://hungrylittleminds.campaign.gov.uk/
• Parent forums: Contact for support if your child has additional education/health need
• The Communication Trust: for what to expect at different ages www.thecommunicationtrust.org.uk
• ICAN: a children’s communication charity www.ican.org.uk

Helpful Organisations

National Autistic Society (NAS)

• Website: https://www.autism.org.uk/
• T: 0808 800 4104
• Toilet Training a Guide for Parents and Carers: www.autism.org.uk/advice-and-guidance/topics/behaviour/toileting/parents

ERIC

ERIC is the children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children.

• T: 0808 169 9949

Contact a family

They offer practical information and resources about support for families who have a child with a disability

• Website: https://contact.org.uk/       
• T: 0808 808 3555

Ambitious about Autism

The national charity for children and young people with autism. Their parent hub provides practical information and resources about ASD. They also have an online community for adults with autism, parents and professionals.

• Website: https://www.ambitiousaboutautism.org.uk/
• T: 0208 815 544

The Challenging Behaviour Foundation

A charity for people with severe learning disabilities and challenging behaviour. They offer information about challenging behaviour both online and over the phone. 

• Website: http://www.challengingbehaviour.org.uk/
• T: 0300 666 0126

Accessing support for yourself 

We appreciate that waiting for your child’s assessment can be a stressful time. It is very important that you try to seek support from friends and family whilst waiting for your child’s assessment

If you are more isolated and do not have a supportive social network, there are other services available that can provide support.

You might benefit from accessing a parent carer forum group- they offer regular meetings and individual support:

• Parents Active: 0208 748 5168

Any further questions?

Please don’t hesitate to contact us if you have any further questions or concerns.

For questions about your appointment or waiting time, contact the social communication appointments coordinator on 0203 315 3121.

For questions about the assessment, and resources whilst you wait email the specialist community nursing team ccds.cnsteam@nhs.net

Preparing for the assessment 

• We understand that bringing a child for an assessment can be an anxious time for parents. We recommend that both parents attend the assessment where possible. If this is not possible, you are very welcome to bring a friend or relative to support you. 
• We might send pre assessment questionnaires to completed by parents or carers  – normally questions about their health and development history, so that you and the team are better prepared.
• The assessment involves detailed interviews with you as the child’s parent or carer, concentrating on the child’s early development , current behaviour and direct play assessment with your child, as well as collecting information from nursery or school
• We will ask for a nursery or school functioning questionnaire to be completed shortly before or after the assessment especially of their interaction with children of similar age.
• It is helpful for you to bring your Child’s Red book (child health records) so that we can see information on their growth and immunisation history. 
• We advise for you to bring a drink and snack for your child as some appointments will be 1-2 hours; a favourite toy might also be helpful
• Another common question asked by parents is how to prepare their child. This will vary depending on the age of your child- however for young children the assessment is very much play based so hopefully they will enjoy their experience.

Contact details 

Cheyne Address

Chelsea and Westminster Hospital (main location)

The Cheyne Child Development Service

Doughty House

369 Fulham Road

London, SW10 9NH

T: 0203 315 6488

Parkview Centre for Health & Wellbeing

The Cheyne Child Development Service

Cranston Court

56 Bloemfontein Road

White City, London W12 7FG

T: 0203 704 6060

• Cheyne Website: https://www.chelwest.nhs.uk/services/childrens-services/community-services/cheyne-child-development-service
• NAS_National Autistic Society: https://www.autism.org.uk/

What is Autism?

We all have our own set of strengths and difficulties. Autism Spectrum Disorder (ASD) describes a particular pattern of difficulties across three main areas.

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different.

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging.

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed; Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of.

What causes ASD?

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development.

Autism is not caused by a person’s upbringing or social circumstances

Is my child’s autism “mild” or “severe”?

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example:

• The individual’s set of strengths and difficulties
• Their language skills i.e. their ability to safely and effectively communicate their needs to others
• Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
• Social factors e.g. having opportunities to socialise

Your child may develop skills that help them manage or cope with their difficulties in certain situations and they may be better able to use these skills on some occasions more than others. A person’s difficulties will likely shift between “mild” and “severe” across settings and at various stages of their life.

Whilst your child may develop skills that help them cope or manage their (e.g. learning how to initiate a conversation), they may be better able to use these skills on some occasions more than others (e.g. with familiar adults compared to unfamiliar peers).

As strengths and difficulties change over time and across settings it is not possible to judge whether someone has “mild” or “severe” Autism. Autism is better understood as a spectrum. Gaining a clear understanding of your child’s individual strengths and difficulties is a useful first step when thinking about the support they will need after diagnosis.

The following visual guide explains what is meant by autism spectrum: Click here

Dealing with a Diagnosis

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming.

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be unsure on how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional.

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful.

Local Parent Groups for children with disabilities can be helpful- they offer access to support groups and additional support.

• Hammersmith and Fulham : Parents Active
• Kensington and Chelsea : Full of Life
• Westminster : Make it Happen  
• Post Autism Group Kensington and Chelsea: AEYIT@rbkc.gov.uk    
• Post Autism Group Westminster: qe2referral@qe2cp.westminster.sch.uk
• Post Autism Group  Hammersmith and Fulham: Sioux.Fisher@lbhf.gov.uk
• National Autistic Society (NAS) Parent to Parent support: Parent to Parent is the NAS' award winning UK wide confidential emotional support service, provided over the phone by trained volunteers who are all parents of autistic children : 0808 800 4106 https://www.autism.org.uk/directory/p/parent-to-parent

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment with a Speech and Language Therapist and specialist nurse from the Cheyne Child Development service. You will also be offered follow up support from your child’ speech therapist.

We will discuss the benefits of sharing your child’s reports with their nursery or school normally through their SENDCO teacher –outlining their individual strengths and any need for additional support.

There can be a lot to take following your child’s assessment and during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Groups at the Cheyne CD

Raising Healthy Eaters

A program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists. Contact: 0203 315 3196

The Behaviour Group

Ran by Clinical Psychologists for parents/carers whose child has some challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours. Contact: 0203 315 3196

Westminster and Kensington and Chelsea parents - PACT-Understanding Autism Group 

Parent Workshops for Kensington and Chelsea, and Westminster: for parents/carers whose child under the age of 5 years has received a diagnosis of autism spectrum disorder. To access the Autism and Early Years Intervention Team, Contact 0207 854 5885

Hammersmith and Fulham parents - Understanding Autism workshops 

Online Parent workshops with a Speech and Language Therapist and Specialist teacher from Hammersmith & Fulham + Specialist Nurses and support staff from the Stephen Wiltshire Centre. For your invitation, email Simran Sylvan: s.sylvan@nhs.net or call: 07393 802 025 to book a place.

Sleep Well

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’, workshops for parents of children with additional needs who have difficulties sleeping. To access, contact: 0203 315 3196

Before any referral to sleep clinic is accepted parents are advised to access helpful advice: National Autistic Society: Click here

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy

Occupational therapy service for children promotes engagement, performance and independence in meaningful, daily activities. For pre-school children support is normally offered when children are delayed in reaching expected self-care skills, with delay identified in 2 age-appropriate functional concerns  – for example at aged 3-5 with concerns of feeding and toileting.

Referrals can be discussed with your child’s community paediatrician, speech therapist, or Cheyne specialist nursing team ccds.cnsteam@nhs.net

For more information see www.healthmatters.clch.nhs.uk/occupational-therapy-children

The OT team run regular workshop on understanding sensory processing in ASD. Please contact: 0208 102 4008

Speech and Language Therapy

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Early years speech therapy is for pre-school children and by referral only.  They offer individual and group therapy and can also support your child with offering advice to nursery. SLT for school aged children is accessed via your child’s school when they access reception class.

• Tel: 0203 315 6478
• Website: Click here

Clinical Psychology

The Clinical Psychology team offer group support, for a range of difficulties (e.g. behaviour, emotional development sleep and feeding).Telephone: to access groups 0203 315 3196

Music Therapy

Music therapy uses shared music making as a way of supporting children who may have communication, social, physical or emotional difficulties. Referral to music therapy can be made for children up to the age of 5 years and 11 months. 

For referral contact Cheyne specialist nurses: ccds.cnsteam@nhs.net

SEND Local Offer 

The Local Offer aims to bring together useful information across education, health and social care within one website. You can find information, advice and guidance and a range of local service providers who support children and young people with Special Educational Needs and Disabilities (SEND)

• Kensington and Chelsea residents: Click here
• Hammersmith and Fulham residents: Click here
• Westminster residents: Click here

Local Services: Hammersmith & Fulham

For more information search “SEND Local Offer LBHF Autism Infographic” in your internet search engine.

Stephen Wiltshire Centre

The Stephen Wiltshire Centre is a purpose-built specialist centre for children with special educational needs and/or disabilities (SEND), and their families, who live in Hammersmith & Fulham. They operate a duty phone line between 9am-4pm, Monday- Friday, for enquiries of accessing support, including stay and play sessions or short break access.

They also offer short term support from integrated keyworkers for children aged 0-5 years To contact the duty line, please call 0208 753 4443

• Email: Enquiries_toStephenWiltshireCentre@lbhf.gov.uk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR

Parents active

Is a local parent led organisation supporting parents of children and young people with disability. This includes a support network for parents to gain and share information, make new friends and most importantly realise that they are not alone. Parents are kept informed through coffee mornings, events, website, training, workshops and newsletters

• Website: www.parentsactive.org.uk
• Tel: 02087485168

Parent Coffee Mornings

For parents of children and young people with ASD.

• Mobile: 07765 406 862 / 07920 084463
• Email: adem.cetindamar@lbhf.gov.uk / Sioux.Fisher@lbhf.gov.uk

Let’s Unite for Autism, Hammersmith and Fulham

This is a Local parent led organisation: provision of advice, guidance, support and information to those affected by Autism.

• Email: info@letsuniteforautism.org 
• Tel: 0203 191 6214

West London Action for Children

West London Action for Children offers a range of counselling and therapy services for children and families in need who are based in the London boroughs of Hammersmith & Fulham and Kensington & Chelsea. We support families under stress to develop their confidence and skills to cope with the ordinary and extraordinary challenges of family life. Our services are primarily available to those on Income Support or receiving Tax Credits. 

• Email: team@wlac.org.uk 
• Tel: 020 7352 1155
• Website: https://www.wlac.org.uk/

H&F Independent Advice and Support Service

Advice and support relating to Special Educational Needs including getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

• Tel: 0208 840 9099
• Email: wlpp@insightsesc.co.uk  
• Website: https://insightsesc.co.uk/iass/

Local Services: Kensington & Chelsea

For more information search “SEND Local Offer RBKC Autism Zone” in your internet search engine.

Kensington and Chelsea Social Care Disabled Children’s Service 

Support from Kensington and Chelsea Disabled Children’s Service is provided by the Early Intervention & Support Team  

The Early Intervention & Support Team 

This team will support families with children aged 0- their 5th birthday.

• To receive support from this team the child must have a Diagnosis, or have been referred to the Child Development clinics with a likelihood of a Diagnosis.
• Once the referral has been accepted, the Practitioner will visit to look at the family’s needs.
• These include Autism Spectrum Disorder awareness, Fussy Eating support, Sleep Advice, Health and Safety in the home, support with accessing nursery and school and many more.
• To access the team contact 0207 598 4921  or Cheyne specialist nursing team email ccds.cnsteam@nhs.net or call 0203 315 6470

St Quintin’s Disabled Children’s Centre

A specialist play service for children with a disability. This service includes play schemes, stay and play for families, summer holidays and family day trips.

Please call 0208 969 2570 or contact the Early Intervention and Support team.

Full of Life

Full of life provides free practical independent advice and support to parents and cares including benefits and advice support with accessing information on a range of services including access to education advice and access to parent carer groups. 

• Tel: 0208 962 9994
• Email: info@fulloflifekc.com
• Website: www.fulloflifekc.com

Autism and Early Years Intervention Team

The Specialist Service supports children and young people with ASD within the school setting. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to National Autistic Society Early Bird program to book onto a course, please contact Clare Sumpter by emailing clare.sumpter@rbkc.gov.uk or contact 0207 854 5885, you can also visit their website: Click here

Tell it Parents Network

Tell It Parents Network runs a weekly drop in and 1:1 support where parents can access advice and support with a range of issues that impact on parenthood.

• Tel: 0207 289 7918
• Email: admin@tellitparentsnetwork.co.uk
• Website: https://tellitparentsnetwork.co.uk/

Local Services: Westminster 

For more info search “SEND Local Offer Westminster” in your internet search engine

Support from Westminster Disabled Children’s Service is provided by the Early Intervention & Support Team.

The Early Intervention & Support Team (Westminster)

• This team will support families with children aged 0 to 5th birthday.
• To receive support from this team the child must have a diagnosis, or have been referred to the Child Development clinics with a likelihood of a diagnosis.
• Once the referral has been accepted, the Practitioner will visit to look at the family’s needs.
• They will have a range of Interventions to offer to the family. These can include Fussy Eating support, Sleep and behavioural advice, and  Health and Safety in the home /with accessing nursery and school and many more
• To access the team contact Cheyne Specialist nursing team 0203 315 6470 or email ccds.cnsteam@nhs.net

Tresham Family Centre

Including a new sensory room and soft play area:

27 Tresham Crescent, London NW8 8TW

See local offer SEND for access or contact 0207 641 1553 or the Early Support and Intervention service.

Make it Happen 

This is a local group for parents and is supported by volunteers working together to help improve services in Westminster.

All our members have an understanding of different forms of care within a wide range of disabilities and offer advice to parent and access to parent groups and news letters to help keep parents informed of local services. 

• Tel: 07376 777 205
• Email: info@wppg.org.uk
• Website: https://www.wppg.org.uk/about-us/

The National Autistic Society West London Branch 

The West London Branch of the National Autistic Society was set up by a group of local parents in 2012.  Anyone from West London can join and attend events and activities.

For information about Autism, Activities have a look at our website, social media platforms or send an email, become a member and receive information. 

• Email: Westlondonbranch@nas.org.uk
• Website: http://naswestlondonbranch.webeden.co.uk

EarlyBird Course 

A free three-month programme for Parents/Carers of young children (2 years to 5 years) with Autism spectrum disorder; offering advice and guidance on strategies and approaches for dealing with young autistic children.

The following services run these courses. Please contact them for further details:

• Westminster Special Schools Training and Outreach Service: 020 7641 5825
• Autism and Early Years Intervention Team: 0207 854 5885
• The Tresham Centre: 0207 641 5095
• Bessborough Family Hub: 0207 598 4917

Westminster Information Advice Support Service (IASS)

Free confidential service is available to parents, children and young people. They can help by providing access to impartial guidance and support on matters relating to the law, local policy and practice, the local offer and Education, Health and Care (EHC) assessments.  

• Tel: 0207 641 5355   
• Email: iass@westminster.gov.uk           
• Website: www.westminsteriass.co.uk

Home Start

Home Start supports families living in Westminster and Kensington and Chelsea, providing there is at least one child under five-years, or a baby on the way. Through a network of trained and DBS checked volunteers, they support hundreds of parents and children who are experiencing difficulties of one kind or another.

• Tel: 0207 724 1345
• Email: admin@hswestminster.co.uk
• Website: www.homestartwestminster.org.uk  

National Organisations

NAS (National Autistic Society)

The leading UK charity for people with Autism and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.

• Website: https://www.autism.org.uk/
• Tel: 0808 800 4104

Ambitious about Autism

The national charity for children and young people with autism. Their parent hub provides practical information and resources about ASD. They also have an online community for adults with autism, parents and professionals.

• Website: https://www.ambitiousaboutautism.org.uk/ 
• Tel: 0208 815 544

The Autism Education Trust

Provides information and support relating to young people and their access to education. They also have specific information for children “child zone” and young people “the den”.

• Website: https://www.autismeducationtrust.org.uk/
• Tel: 0207 903 3540

The Challenging Behaviour Foundation

A charity for people with severe learning disabilities and challenging behaviour. They offer information about challenging behaviour both online and over the phone.

• Website: http://www.challengingbehaviour.org.uk/
• Tel: 0300 666 0126

Contact a family

They offer practical information and resources about support for families who have a child with a disability

• Website: https://contact.org.uk/  
• Tel: 0808 808 3555

Sibs

Support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

• Website: https://www.sibs.org.uk/

Cerebra

This is a great website with lots of leaflets to download.

• Website:  www.cerebra.org.uk           
• Tel: 01267 244200

Independent Parental Special Education Advice

A registered charity that offers free and independent legally based information, advice and support to help get the right education for children with special educational needs (SEN). They provide support with Local Authorities’ legal duties to assess and provide for children with special educational needs.

• Website: https://www.ipsea.org.uk
• Tel: 01799 582 030

Understood

This website holds a compilation of different resources and information about attention and learning issues, school and learning, friends and feelings and family relationships. They provide customised advice and interactive tools based on a child’s issues and their conditions. 

• Website: https://www.understood.org/our-mission

The Autism Directory

Created by parents, carers and professionals, the Autism Directory signposts people to the wealth of information, support groups, autism friendly business and other useful information. 

• Website: www.theautismdirectory.com
• Tel: 01443 844764

Further Healthcare services 

Healthcare services are made up of a range of professionals and these are all described below:

Health Visitors

Your Health Visitor will receive a copy of your child’s assessment report and will continue to support your child’s health needs until they reach the age of 5 years –helping with growth monitoring, immunisation, diet, and sleep and toileting advice.

If your child is over the age of 3 and has a diagnosis if autism and still needs nappies you can get them free through your health visitor. For families having difficulty contacting their school nurse of Health visitor then support can be accessed from the Cheyne specialist nurse on contact number 0203 315 6470 email address ccds.cnsteam@nhs.net

Toilet Training Advice 

Teaching your child to use the toilet correctly can be a difficult task, whether they are on the autism spectrum or not. But if your child is autistic, the process of developing a toilet routine can take longer, and involve its own particular challenges, The guide below provides some useful steps that will hopefully make your toilet training a success:

• National Autistic society 

Toilet Training a Guide for Parents and Carers: www.autism.org.uk/advice-and-guidance/topics/behaviour/toileting/parents

• ERIC

The children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children. Contact: 0808 169 9949

Dieticians and Fussy Eating Concerns 

Many children with autism can have fussy eating; you might find helpful advice from the following website: Click here

Dieticians work with children and families to provide nutritional assessment, and advice on how to best meet nutritional requirements for individual children. Referral can be requested from your child’s GP, paediatrician, Health visitor or Cheyne Specialist nursing team ccds.cnsteam@nhs.net or contact number 0203 315 6470 

Dentists

The specialist community dental service provides care for children who are unable to be treated in an ordinary dental practice.

To access this they should be registered with, a GP in Barnet, Hammersmith and Fulham, Kensington and Chelsea, or Westminster.

Referrals can be requested by your local dentist, GP, or other healthcare professionals including paediatrician, health visitor or Cheyne specialist nursing team,ccds.cnsteam@nhs.net or contact number 0203 315 6470

Education Services

Health Early Notification

Following assessment a key professional within the team will send a notification to your local (SEND) authority. This is required by law, and is called a Health Early Notification. This should help to support any additional need for educational support your child might need in order to help them to access education. You will be given an information sheet explaining this following your child’s diagnosis.

Nursery and School Placement 

• Most children with Autism will attend mainstream nurseries and schools
• The best school or educational setting for your child will depend on their needs-and will take into consideration your choice.
• Some children may benefit from a more specialist setting, nursery or school, or a special resource base in a mainstream school. You may wish to consider looking at mainstream and specialist placement when applying for school reception age placements. This will help you make an informed choice, see Local offer SEND for details of mainstream and specialist placement.
• You might choose for your child to have an additional year in nursery dependent on their needs and readiness for school reception class. You can discuss this with school and nursery SENDCO teachers. Your child’s assessment and relevant documentation should be helpful by advising on any additional support they might need.
• 2 year offer – Children with autism will qualify for 15 hours free nursery placement :for further information: https://www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds see local SEND offer for list of available  nurseries
• 3-4 year offer: All parents/carers with a child aged 3-4 years are entitled to receive 15 hours of free early education in a nursery or pre-school setting which can be accessed for 38 weeks of the year;  see your local offer for list of local nurseries
• School placement – see local SEND offer for list of local schools –including mainstream and specialist –you will need to apply to your local education department by15th January to access placement for September.
• All nurseries and pre-schools must appoint a Special Educational Need and/or Disability Coordinator (SENDCO). This is a specialist nursery practitioner or teacher who holds responsibility for supporting children with SEND.
• Discussion with the nursery of school SENDCO teacher will be helpful to explain your child’s diagnosis, their individual needs and your wishes for education. They will be well placed to advise you on the next steps for any additional support your child will need -whilst taking into consideration your child’s Autism diagnosis and their progress in nursery or school.
• Some children who need a high level of support so that they can access education will need an Education and health care ( EHCP)  plan, which looks at your child’s needs and brings together education, health and care services to achieve agreed outcomes ( see your local SEND offer for more information).
• The need for an EHCP plan will be dependent on the support provided by the individual nursery, or school and the needs for your child. Many children with autism are provided with additional  support from schools without EHCP plans  as schools and nurseries already have additional funding.
• If your child needs a more specialist setting, they will likely need an Education Health and Care Plan (EHCP).
• The assessment for the EHCP Plan will include consideration of  the most suitable special school or specialist resource base for  your child:  see local SEND offer for further details
• When considering school application  you might benefit from speaking with the SENDCO teacher to discuss the available support within the school -for example some schools provide speech therapy without the need of EHCP application
• Reports from your Child’s assessments and sharing these will help nursery and school staff to better understand and support your child. 

Parent Partnership

Parent Partnership Services (PPS) offer advice and support to parents and carers of children and young people with special educational needs. They are statutory services, which mean there has to be one in every local authority. They are free, impartial and confidential services. The sort of things they do include running a confidential helpline.

• Offer support in preparing for and attending meetings
• Help in filling in forms and writing letters/reports
• Support parents/carers in resolving disagreements with school and the LEA
• Signpost to other statutory and voluntary services
• Link to local parent support groups and forums
• Ensure that parents/carers views help inform and influence local policy and practice
• Offer training opportunities for parents and professionals
• Work with families of excluded pupils

Your local Parent Partnership service:

• Hammersmith & Fulham – Insights IASS: First Floor, 1 Craven Road, Ealing, London, W5 2UA, Tel: 0208 840 9099
• Kensington & Chelsea - Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ, Tel: 0208 962 9994
• Westminster - Westminster City Council, Children and Young People, 1st Floor, 215 Lisson Grove, London, NW8 8LF, Tel: 0207 641 5355
  

Financial Support

Disability Living Allowance (DLA)

Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

• Is under 16
• Has difficulties  or needs much more looking after than a child of the same age who does not have a disability
• Use the link : www.gov.uk/disability-living-allowance-children for more information: You can request the benefit forms by calling Tel: 0845 7123 45

Contact a Family

Provides support, advice and information for families with disabled children, including benefits advice: Helpline: 0808 808 3555 : or access www.contact.org.uk

Local Support with benefits advice and completing DLA applications can be requested from:

• Hammersmith and Fulham: Doreen.Taggart@actionondisability.org.uk : 0203 080 0381
• Kensington and Chelsea: Full of Life: 0208 962 9952
• Westminster Citizen’s Advice Bureau (CAB) can help you with your application for benefits. You can call Westminster Citizen's Advice on 0300 330 1191

The Family Fund

Financed by government and administered by the Rowntree Memorial Trust for children with a severe disability (and they include autism in this category). There is no formal means test to obtain funds from the Family Fund, though you are less likely to obtain help if your family income is over £23,000 per year or you have savings of over £8000. They have funding for over 80,000 families, so it is well worth applying. You can apply once a year every year for things such as a holiday, outings, transport costs etc. Tel: 0845 130 4542       

Cerebra

This is a small grant scheme offering practical assistance to improve the quality of life of children and young people to age 16 affected by neurological conditions. Examples of grants made are: Touch screen computers/holidays (up to £500)/specialist car seats/approved therapies/trampoline/sensory toys/specialist cycles.

• Website: www.cerebra.org.uk
• Tel: 01267 244 216

Disabled Parking Badges

You will need to fill in a Blue Badge application form. Please contact your local council or see your SEND local offer for further details or access advice from CONTACT organisation: www.contact.org.uk

Autism Alert Card website: ARGHCard  arghighland.co.uk

Recreational Activities

Cinema

The Vue, Odeon and PictureHouse cinemas do autism friendly screenings for families and schools. Contact them directly for details.

Websites:

• https://www.picturehouses.com/accessibility
• https://dimensions-uk.org/get-involved/campaigns/dimensions-autism-friendly-environments/
• https://www.odeon.co.uk/accessibility/

Football Clubs

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC:conorm@qpr.co.uk

Gambado

SEN & Autism Friendly FREE Soft Play Sessions at Gambado - Sessions available in Chelsea, Beckenham and Watford.

• Website: www.gambado.com

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs. 

• Website: www.okmtrust.co.uk  

Science Museum ‘Early Birds’ 

Early Birds enables families with children who have an Autistic Spectrum Condition to come along and enjoy the Museum free from the busy general public.

• Tel: 020 7942 4777
• Website: www.sciencemuseum.org.uk

Legoland

Allow people with DLA/diagnosis letter to skip the long queues when entering the park and going on rides. Other theme parks provide this service also.

Lion king

The Lyceum theatre provide autism friendly showings in the West End

Other

Groups that provide free horse-riding therapy are listed through the following organisation: Riding for Disabled Association. www.rda.org.uk

Useful Reading and Websites

• Speech and language therapy website: https://www.clch.nhs.uk/services/speech-and-language-therapy-children
• Speech Therapy Twitter page (for SLT tips and sharing resources): https://twitter.com/CLCH_SLT_CHD  If you don’t have Twitter find us online and paste links into your browser. If you have an account and would like to share helpful tips for other parents then tag us for a re-tweet with the following handle: @CLCH_SLT_CHD
• NSPCC’s ‘Look, Say, Sing, Play’ campaign’ with the following link: https://www.nspcc.org.uk/preventing-abuse/keeping-children-safe/look-say-sing-play/sign-up
• Vroom: Boost your child's learning with Vroom's fast and fun tips to your phone or via email. https://www.vroom.org
• The Hungry Little Minds campaign provides lots of ideas that can help boost your child’s learning. https://hungrylittleminds.campaign.gov.uk/
• Parent forums: Contact for support if your child has additional education/health need
• The Communication Trust: for what to expect at different ages www.thecommunicationtrust.org.uk
• ICAN: a children’s communication charity www.ican.org.uk
• A useful short film ‘Amazing Things Happen’ explains autism in a clear and positive way: https://www.youtube.com/channel/UCZYtA26fbFCYIecm-WsEaeQ
• https://www.autismeducationtrust.org.uk/kids-zone/ - an online resource for children on the autism spectrum
• Help for Families with autistic children: including how to help with your child’s behaviour: www.nhs.uk/conditions/autism/autism-and-everyday-life/help-for-families/
• More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder (Sussman, 1999)
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie; Practical ways to help children and young people on the autism spectrum learn and achieve
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah, Dealing with common behaviour problems in young children with autism
• HELPING YOUNG CHILDREN WITH AUTISM TO LEAR by Liz Hannah , A practical guide for parents and staff in mainstream schools and nurseries
• THE SURVIVAL GUIDE FOR KIDS WITH AUTISM SPECTRUM DISORDERS by Elizabeth Verdick and Elizabeth Reeve

Contact Us

Cheyne Child Development Service

Cheyne Pathway Co-ordinator: 0203 315 3121

Specialist Nurses: ccds.cnsteam@nhs.net

Cheyne Child Development Service: https://www.chelwest.nhs.uk/services/childrens-services/community-services/cheyne-child-development-service

NAS_National Autistic Society: https://www.autism.org.uk/

What is Autism?

We each have our own set of strengths and difficulties.

Autism spectrum disorder (ASD) describes a particular pattern of these strengths and difficulties across three main areas: 

Many children with autism also show differences in their sensory processing:

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different.

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging. 

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed: Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of. 

What causes ASD? 

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development. 

Autism is not caused by a person’s upbringing or social circumstances.

Is my child’s autism “mild” or “severe”? 

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example: 

• The individual’s set of strengths and difficulties
• Their language skills i.e. their ability to safely and effectively communicate their needs to others
• Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
• Social factors e.g. having opportunities to socialise

The following visual guide explains what is meant by autism spectrum: https://autismanimated.com/dolph/m/feed/view/Understanding-thespectrum-a-comic-strip-explanation

Receiving a Diagnosis 

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming.

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be more unsure or how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional. 

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful. 

Telling your child  

When to tell your child about their diagnosis is your decision. This will vary depending on you and your child. Some children may notice they are different and ask questions at a young age. Others may struggle to understand the concept of Autism until they are a bit older. 

There isn't one 'right' way to tell your child about their diagnosis, but it may help to take the following things into consideration: 

• Who is the best person in the family to bring up the subject? Who is the child most comfortable with? 
• Choose a good moment to bring it up, when the mood is calm and the environment is familiar. 
• Try to avoid being interrupted if possible as your child may have questions.
• Follow your child’s lead. It is often helpful to provide information over a series of small conversations rather than having one big conversation.  
• If your child asks you something that you are unsure about, it’s okay to tell them you don’t know but will find out and come back to them with an answer. 

The National Autistic Society suggests that a popular way to bring up the conversation about Autism is to talk about differences and think about family member’s strengths and weaknesses. Autism is just a particular pattern of strengths and weaknesses. For more information on how to tell you child, please visit the National Autistic Societies website: www.autism.org.uk

Below are some books which you may find useful:

• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright
• I AM SPECIAL by Peter Vermeulen
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment that is provided by a member of the assessment team.

There can be a lot to take in during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Families can also often access support within their local community. 

Groups at the Cheyne 

ASCEND

The ASCEND group is run by Clinical Psychology for parents/carers whose school-aged child has received a diagnosis of ASD. The group provides an opportunity to gain a greater understanding about what Autism is, what underlies difficulties and to develop strategies that can support your child’s social and emotional skills.  

Raising Healthy Eaters 

Raising Healthy Eaters is a program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists.

The Behaviour Group

The behaviour group is run by Clinical Psychologists for parents/carers whose child with additional needs has challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours.   

Sleep Well

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’ workshops for parents of children with additional needs who have difficulties sleeping. 

A member of the Cheyne team will refer you to these groups if it is appropriate. If you have any questions about these groups you can contact the Psychology team on CCDS.psychology@nhs.net

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy  

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community.

Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties. 

The OT team also run a regular workshop on understanding sensory processing in ASD. 

T: 0208 102 4008 

Speech and Language Therapy  

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Speech and Language therapy offered at Cheyne is for pre-school children and by referral only.

Speech and Language therapy for school aged children is accessed via a referral from your GP or your child’s school. 

Clinical Psychology

The Clinical Psychology team offer mainly group support and consultations with school/nursery staff and other professionals for a range of difficulties (e.g. behaviour, emotional development sleep and feeding). 

• E: CCDS.psychology@nhs.net
• T: 0203 315 3196

Local services

The main location to find out what is available in your local area is the SEND (Special Educational Needs) ‘Local Offer’. 

• K&C: Click here
• H&F: Click here
• South Westminster: Click here

Or search “Local Offer” and your local area. Each borough has a specific Autism page. 

Local Services: Westminster/RBKC/LBHF

EarlyBird and EarlyBird Plus 

EarlyBird (under five years) and EarlyBird Plus (ages four-nine) are additional support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children. Both programmes work on understanding autism, building confidence to encourage interaction and communication and analysing and managing behaviour.

The following services run these courses, please contact them for further details:

• Westminster Special Schools Training and Outreach Service: 020 7641 5825
• Autism and Early Years Intervention Team: 0207 854 5885 (RBKC & SW1)
• The Tresham Centre : 0207 641 5095
• Bessborough Family Hub: 0207 598 4917
• Westminster Disabled children’s service: 0207 641 5095
• Hammersmith and Fulham INSPIRE team: 0208 753 1021

The National Autistic Society West London Branch 

The West London Branch of the National Autistic Society was set up by a group of local parents in 2012. We are a purely voluntary group that campaigns for the boroughs of Westminster, Hammersmith & Fulham and Kensington & Chelsea. Anyone from West London can join us as a member and attend our events and activities. We have various social events lined up and we need you to volunteer with us! If you are interested, please get in contact.                               

For information about Autism, Activities we run and activities by other organisations, have a look at our website, social media platforms or send us an email, become a member and receive information. 

• E: Westlondonbranch@nas.org.uk
• W: http://naswestlondonbranch.webeden.co.uk/

Child and Adolescent Mental Health Service (CAMHS)

CAMHS provides a comprehensive range of targeted and specialist community mental health assessments and treatments for children and young people with moderate to severe mental health difficulties, learning disabilities, neurodevelopmental difficulties (such as ASD) and Attention Deficit Hyperactivity Disorder.

• T: 0203 204 5500 (Westminster) 0208 383 6123 (RBKC) 020 8483 1979 (LBHF)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

Psychological Support for Parents (adults 18+)

Brief, talking therapies and counselling services are suitable for people experiencing feelings of low mood, anxiety and/or particular fears or problems coping with daily life and relationships. Westminster, Kensington & Chelsea and Hammersmith and Fulham offer a free, confidential NHS service which provides psychological treatment. You can be referred via your GP, other health professionals or by self-referral

W: http://cnwltalkingtherapies.org.uk/refer-yourself

Local Services: Hammersmith & Fulham

Stephen Wiltshire Centre

The Stephen Wiltshire Centre is a purpose-built specialist centre for children with special educational needs and/or disabilities (SEND) and their families, who live in Hammersmith & Fulham. The Stephen Wiltshire Centre operates a duty phone line between the hours of 9am - 4pm, Monday to Friday. They offer advice, post diagnostic support from integrated key workers and stay and play sessions.  

• T: Contact the duty line, please call 0208 753 4443 or email
• E: StephenWiltshireCentre@lbhf.gov.uk
• W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=YhvL7YW7bOk
• Address: Queensmill Rd, (behind Queen’s Manor Primary school), London, SW6 6JR 

Parent’s active

‘We endeavour to keep parents informed through coffee mornings, events, website, training, workshops and a newsletter. Our mission is to provide a support network for parents to gain and share information, make new friends and most importantly realise that they are not alone. We have a membership of more than 400 parents’.

• T: 0208 748 5168 
• W: www.parentsactive.org.uk

West London Action for Children

West London Action for Children offers a range of counselling and therapy services for children and families in need who are based in the London boroughs of Hammersmith & Fulham and Kensington & Chelsea. We support families under stress to develop their confidence and skills to cope with the ordinary and extraordinary challenges of family life. Our services are primarily available to those on Income Support or receiving Tax Credits. 

• T: 020 7352 1155
• E: team@wlac.org.uk 
• W: https://www.wlac.org.uk/

Autismlinks (H&F Independent Advice and Support Service)

Advice and support relating to Special Educational Needs including getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

• T: 0208 840 9099
• E: wlpp@insightsesc.co.uk
• W: https://insightsesc.co.uk/iass/

INSPIRE-ASD Outreach service

The Inclusion and Specialist Intervention Outreach Service provides specialist interventions to inspire Children and Young People with SEND to transform their lives and achieve the best outcomes. Specialist interventions, assessment, teaching and advice are provided specifically for children and young people with hearing impairment, visual impairment, Autistic Spectrum Disorder and Dyslexia as well as advice for young children with significant developmental delay.

• T: 0208 753 1021
• E:inspire@lbhf.gov.uk
• W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0

Local Services: Kensington & Chelsea and Westminster

Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to ASD awareness training. For the latest dates and to book onto a course, please contact Christa Morley by emailing Christa.Morley@rbkc.gov.uk or searching the local offer.

Care Planning and Review Team 

This team will support Families with a child who has additional needs aged 5 -13 years. 

• New online Parenting Support sessions/Webinars
• Parenting groups: Early Bird, Early Bird Plus, Teen Life, Triple P
• Monthly Q and A sessions with Practitioners and other colleagues.
• On-going support from the Disabled Children's Centres- St Quintin and Tresham  Care Package Delivery
• Drop Ins
• Activity Sessions
• ASD Girls group
• Sibling Support 

Preparing for Adulthood Team - Age 14+  

Once the child is 14 they will transfer or can be referred into this team. They will continue to support the families till the young person’s 18^th Birthday.

• This team will start to think about the future?
• Will they go to college or start to think about work?
• They will offer practical support for the young person to prepare for the next stage.

Short Breaks

Children with autism may be entitled to short breaks if they are affected in their everyday living by one or more of the following:

• Severe physical, learning disability or sensory impairment, which is substantial and has a negative effect on their ability to do normal daily activities
• Following diagnosis referrals are accepted, and can be requested by parents and professionals

T: 0207 598 4921  

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

West London Action for Children

West London Action for Children offers a range of counselling and therapy services for children and families in need who are based in the London boroughs of Hammersmith & Fulham and Kensington & Chelsea. We support families under stress to develop their confidence and skills to cope with the ordinary and extraordinary challenges of family life. Our services are primarily available to those on Income Support or receiving Tax Credits. 

• T: 020 7352 1155
• E: team@wlac.org.uk
• W: https://www.wlac.org.uk/

K&C Tell it Parents Network

Tell It Parents Network runs a weekly drop in and 1:1 support where parents can access advice and support with a range of issues that impact on parenthood.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

The Venture Centre Stay and Play (Sessions for families of children with special needs)

The Venture Community Association has partnered with local parent groups to offer a series of free stay and play sessions for families of children with special needs.

• T: 0208 960 3234
• W: www.venturecentre.org.uk

Westminster Information Advice Support Service (IASS)

Free confidential service is available to parents, children and young people. They can help by providing access to impartial guidance and support on matters relating to the law, local policy and practice, the local offer and Education, Health and Care (EHC) assessments.              

• T: 0207 641 5355              
• E: iass@westminster.gov.uk
• W: Westminster Information Advice Support Service :: Home (westminsteriass.co.uk)

Westminster Special Schools Training and Outreach Service

The Westminster Special Schools and Outreach and Training Service delivers dynamic and creative special education support to pupils, staff, parents and a wide range of related services. This includes a course for parents and carers of children with a diagnosis of ASD (Cygnet Training). You can access more support in the Westminster SEND local offer ‘Autism Zone’. 

• T: 0207 641 5825               
• E: DCT@westminster.gov.uk 

Caxton Youth Organization

Caxton Youth Organization offers evening activities for young people aged 11-25, who live in Westminster and have disabilities.  

• T: 0207 834 1883
• E: caxtonyouthorg@btconnect.com
• W: Home - Caxton Youth Organisation

Learning Disability Network London (previously called the Westminster Society)

The Westminster Society is an award winning charity providing a range of group sessions and support for both adults and young people with Learning Disabilities from 14-18 years. Please note that not all children with ASD will qualify for this service.

• T: 020 8968 7376               
• W: Home - LDN London

National Organisations 

NAS (National Autistic Society)

The leading UK charity for people with Autism and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.

• T: 0808 800 4104
• W: https://www.autism.org.uk/  

Ambitious about Autism

The national charity for children and young people with autism. Their parent hub provides practical information and resources about ASD. They also have an online community for adults with autism, parents and professionals.

• T: 0208 815 544
• W: https://www.ambitiousaboutautism.org.uk/

The Autism Education Trust

Provides information and support relating to young people and their access to education. They also have specific information for children “child zone” and young people “the den”.

• T: 0207 903 3540
• W: https://www.autismeducationtrust.org.uk/

Scope

Provide support and information for people who have a physical impairment, learning disability or any other condition.

W: https://www.scope.org.uk/

The Challenging Behaviour Foundation

A charity for people with severe learning disabilities and challenging behaviour. They offer information about challenging behaviour both online and over the phone or email.

• T: 0300 666 0126
• W: http://www.challengingbehaviour.org.uk/

Autism Links

Website providing practical information about services and resources for children and adults living with autism

W: http://autismlinks.co.uk

Contact a family

They offer practical information and resources about support for families who have a child with a disability

• T: 0808 808 3555
• W: https://contact.org.uk/       

Sibs

Support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

W: https://www.sibs.org.uk/

Cerebra

This is a great website with lots of leaflets to download. 

• T: 01267 244200
• W:  www.cerebra.org.uk             

Independent Parental Special - Education Advice

A registered charity that offers free and independent legally based information, advice and support to help get the right education for children with special educational needs (SEN). They provide support with Local Authorities’ legal duties to assess and provide for children with special educational needs.

• T: 01799 582 030
• W: https://www.ipsea.org.uk                  

Understood

This website holds a compilation of different resources and information about attention and learning issues, school and learning, friends and feelings and family relationships. They provide customised advice and interactive tools based on a child’s issues and their conditions. 

W: Understood - For learning and thinking differences

The Autism Directory

Created by parents, carers and professionals the Autism Directory signposts people to the wealth of information, support groups, autism friendly business and useful information. 

• T: 01443 844764
• W: www.theautismdirectory.com         

Eric

Eric is the children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children. 

• T: 0808 169 9949
• W: ERIC

Further Healthcare services  

Dietetics

The paediatric dieticians provide full nutritional assessment, diagnosis and advice on how best to meet the nutritional requirements for individual patients. Children and young people with diagnosed conditions- especially for those needing additional nutritional supplementation or advice.

Referral can be requested from your child’s GP, paediatrician or school nurse 

Dentistry

The specialist community dental service provides care for children and young people who are unable to be treated in an ordinary dental practice. To access this they should be  registered with, a GP in Barnet, Hammersmith and Fulham, Kensington and Chelsea, and Westminster, referral by their local dentist, GP, or other healthcare professional.

• T: 020 7534 6524 / 6529 or 111 out of hours
• E: clcht.dental@nhs.net
• W: https://clch.nhs.uk/services/dentistry

Education Services 

Advice and support to parents/carers

Once your child has completed their assessment at Cheyne, we recommend that you arrange an appointment with the Special Educational Needs Coordinator (SENDCo) at your child’s school.

You might want to ask school the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• Is your child on the school SEN support register?
• Is your child already known to the H&F Inspire Autism Outreach Team? If not, are school able to make a referral?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress? 

State schools receive some funding to support children with special educational needs. For many children, the additional support offered by schools will be sufficient to meet their needs. It is important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an Education and Health Care Plan (EHCP).

There are many support strategies that schools and nurseries can put in place to support a child with ASD. Schools have access to educational psychology and autism outreach teachers, who can also speak to parents.

Schools should use this advice to implement an ‘Assess Plan Do Review’ cycle of planning and intervention for your child using their SEN resources. If, after this process has been running for some time, your child has not made adequate progress, you and the school may decide to apply for an EHCP.

What is an Education, Health and Care Plan? 

Education, health and care (EHC) plans look at your child’s needs and bring together education, health and care services to achieve agreed outcomes. The focus is very much on what is important for children and young people from birth to 25 years old. As parents/carers, you are much more involved in the process of agreeing your child’s plan. 

An Education Health and Care needs assessment can be requested by anyone, provided the parents agree and give their permission, or, in the case of young people who are over the age of 16, permission from the young person themselves.

Schools, colleges and other services and agencies provide evidence of the child's needs and progress, which will help to decide whether or not the assessment should proceed. Evidence should demonstrate that the child’s special educational needs:

• Are significant and complex 
• Have not responded to relevant and purposeful measures put in place by the school and supporting outside agencies 
• May call for support that cannot usually be provided by a mainstream school from its own resources 

If the local authority agrees to proceed with an Education Health and Care (EHC) needs assessment, this takes up to five months to complete, from the time of the initial request. During this time the local authority gathers information from parents/carers and all education professionals, therapists and doctors involved in your child’s care. This information will be used to draw up a plan which states what the nursery, school, or college, along with other services or agencies can do to help your child.

Educational Psychology Team 

Educational Psychologists work with young people (0-25), their schools/educational placements and families in order to help reduce barriers to learning. If you are worried about your child’s progress you should speak to the school SENCo in the first instance and ask them if they feel a referral to educational psychology might be appropriate. Educational psychologists always seek parental permission before working with a child and value parental input as ‘experts’ in their knowledge of their child. 

Autism Outreach Team:

H&F Inclusion and Specialist Outreach Service (Inspire)

In Hammersmith & Fulham, schools can access outreach support from the Inclusion and Specialist Intervention Outreach Service (Inspire). The Inspire Team provide training and support for schools, offer some individual support to young people in schools, and run parent training courses and drop-in sessions. Further information can be found on the H&F Local Offer page: 

W: http://search3.openobjects.com/kb5/lbhf/fis/service.page?id=PHYzuYXNdBs&localofferchannel=0 

RBKC/Westminster: Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to ASD awareness training. Further information can be found on the RBKC Local Offer page:

W: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Information and Advice Support Service (IASS)

Information and Advice Support Services (IASS) were formerly known as Parent Partnership Services (PPS). It provides independent advice and support to parents and carers of children and young people with special educational needs. This may include getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

Hammersmith & Fulham

• T: 0208 840 9099
• E: wlpp@insightsesc.co.uk
• W: https://insightsesc.co.uk/iass/
• Address: Insights IASS, 1st Floor, 1 Craven Road, Ealing, London, W5 2UA,

Kensington & Chelsea

• T: 0208 962 9994
• Address: Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ, 

Westminster

• T: 0207 6415355
• E: iass@westminster.gov.uk
• W: www.westminsteriass.co.uk
• Address: City Council, Children and Young People, 1st Floor, 215 Lisson Grove, London NW8 8LF

Financial Support  

Disability Living Allowance 

On top of any normal welfare benefits, you may be eligible to apply for Disability Living Allowance (which is paid for the child) and Carers Allowance. Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

• Is under 16
• Has difficulties  or needs much more looking after than a child of the same age who does not have a disability
• The allowance is non means tested, meaning this is awarded regardless of parental income  

You can request the benefit forms by calling:

T: 0845 7123 456

Tax credits

Child Tax credits and Working Tax credits are available for those working but earning less than £16,000 per year per household. There is extra allowance made also in the Child Tax Credit for a disabled child, and more for a severely disabled child. 

T: 0845 3003900

The Family Fund                

Financed by government and administered by the Rowntree Memorial Trust for children with a severe disability (and they include autism in this category). There is no formal means test to obtain funds from the Family Fund, though you are less likely to obtain help if your family income is over £23,000 per year or you have savings of over £8000. They have funding for over 80,000 families, so it is well worth applying. You can apply once a year every year for things such as a holiday, outings, transport costs etc. 

T: 0845 130 4542 

Cerebra

This is a small grant scheme offering practical assistance to improve the quality of life of children and young people to age 16 affected by neurological conditions. Examples of grants made are: 

Touch screen computers/holidays(up to £500)/specialist car seats/approved therapies/trampoline/sensory toys/specialist cycles.

• T: 01267 244216
• W: www.cerebra.org.uk

Disabled Parking Badges

You will need to fill in a Blue Badge application form. Please access Local offer for info.

Recreational Activities 

Cinema

The Vue, Odeon and PictureHouse cinemas do autism friendly screenings for families and schools. Contact them directly for details. 

Websites

• Autism-Friendly Screenings (picturehouses.com)  
• Find Autism Friendly Cinema Screenings Near You | Dimensions (dimensions-uk.org) 
• ODEON - Autism friendly
• Accessible Screenings | UKCA (accessiblescreeningsuk.co.uk)

Football Clubs 

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC: conorm@qpr.co.uk

Gambado

SEN & Autism Friendly FREE Soft Play Sessions at Gambado - Sessions available in Chelsea, Beckenham and Watford

W: www.gambado.com

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs.

W: www.okmtrust.co.uk

Science Museum ‘Early Birds’ 

Early Birds enables families with children who have an Autistic Spectrum Condition to come along and enjoy the Museum free from the busy general public.

• T: 020 7942 4777
• W: www.sciencemuseum.org.uk

Legoland

Allow people with DLA/diagnosis letter to skip the long queues when entering the park and going on rides. Other theme parks provide this service also.

Lion King

The Lyceum theatre provide autism friendly showings in the West End

Other

• Radar keys provide access to public disabled toilets. Cost= £4. Available at www.radar-shop.org.uk , Also available through HAFAD
• Groups that provide free horse-riding therapy are listed through the following organisation: Riding for Disabled Association. www.rda.org.uk
• Gatwick airport provide a sensory room whilst you are waiting at the airport and travelling support Accessibility | Gatwick Airport

Useful Reading and Websites

• I AM SPECIAL by Peter Vermeulen - Introducing Children and Young People to their Autistic Spectrum Disorder
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright - Practical Strategies for Parents and Professionals
• THE SURVIVAL GUIDE FOR KIDS WITH AUTISM SPECTRUM DISORDERS by Elizabeth Verdick and Elizabeth Reeve
• HELPING YOUNG CHILDREN WITH AUTISM TO LEARN by Liz Hannah - A practical guide for parents and staff in mainstream schools and nurseries
• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike - A guide for parents and carers of children with an autism spectrum disorder 
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie. Practical ways to help children and young people on the autism spectrum learn and achieve
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah. Dealing with common behaviour problems in young children with autism
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard
• The Den - Autism Education Trust - an online resource for teens on the autism spectrum
• https://www.autismeducationtrust.org.uk/kids-zone/ - an online resource for children on the autism spectrum 
• A useful short film ‘Amazing Things Happen’ explains autism in a clear and positive way: https://www.youtube.com/channel/UCZYtA26fbFCYIecm-WsEaeQ

What is Autism?

We each have our own set of strengths and difficulties.

Autism spectrum disorder (ASD) describes a particular pattern of these strengths and difficulties across three main areas:

Many children with autism also show differences in their sensory processing:

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different.

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging. 

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed: Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of.

What causes ASD?

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development.

Autism is not caused by a person’s upbringing or social circumstances.

Is my child’s autism “mild” or “severe”?

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example:

• The individual’s set of strengths and difficulties
• Their language skills i.e. their ability to safely and effectively communicate their needs to others
• Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
• Social factors e.g. having opportunities to socialise 

A person may develop skills that help them manage or cope with their difficulties in certain situations and they may be better able to use these skills on some occasions more than others. A person’s difficulties will likely shift between “mild” and “severe” across settings and at various stages of their life.

Whilst your child may develop skills that help them cope or manage their (e.g. learning how to initiate a conversation), they may be better able to use these skills on some occasions more than others (e.g. with familiar adults compared to unfamiliar peers).

As strengths and difficulties change over time and across settings it is not possible to judge whether someone has “mild” or “severe” Autism. Autism is better understood as a spectrum. Gaining a clear understanding of your child’s individual strengths and difficulties is a useful first step when thinking about the support they will need after diagnosis.

The following visual guide explains what is meant by autism spectrum: https://autismanimated.com/dolph/m/feed/view/Understanding-thespectrum-a-comic-strip-explanation

Receiving a Diagnosis

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming. 

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be more unsure on how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional.

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful.      

Telling your Child   

When to tell your child about their diagnosis is your decision. This will vary depending on you and your child. Some children may notice they are different and ask questions at a young age. Others may struggle to understand the concept of Autism until they are a bit older. 

There isn't one 'right' way to tell your child about their diagnosis, but it may help to take the following things into consideration: 

• Who is the best person in the family to bring up the subject? Who is the child most comfortable with? 
• Choose a good moment to bring it up, when the mood is calm and the environment is familiar. 
• Try to avoid being interrupted if possible as your child may have questions.
• Follow your child’s lead. It is often helpful to provide information over a series of small conversations rather than having one big conversation.  
• If your child asks you something that you are unsure about, it’s okay to tell them you don’t know but will find out and come back to them with an answer. 

The National Autistic Society suggests that a popular way to bring up the conversation about Autism is to talk about differences and think about family member’s strengths and weaknesses. Autism is just a particular pattern of strengths and weaknesses. For more information on how to tell you child, please visit the National Autistic Societies website: www.autism.org.uk

Below are some books which you may find useful: 

• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright
• I AM SPECIAL by Peter Vermeulen
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard 

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment that is provided by a member of the assessment team.

There can be a lot to take in during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Families can also often access support within their local community. 

Groups at the Cheyne 

ASCEND

The ASCEND group is run by Clinical Psychology for parents/carers whose school-aged child has received a diagnosis of ASD. The group provides an opportunity to gain a greater understanding about what Autism is, what underlies difficulties and to develop strategies that can support your child’s social and emotional skills.

Raising Healthy Eaters

Raising Healthy Eaters is a program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists.

The behaviour group

The behaviour group is run by Clinical Psychologists for parents/carers whose child with additional needs has challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours. 

Sleep Well

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’ workshops for parents of children with additional needs who have difficulties sleeping. 

A member of the Cheyne team will refer you to these groups if it is appropriate. If you have any questions about these groups you can contact the Psychology team on CCDS.psychology@nhs.net 

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy  

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community. Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties. 

The OT team also run a regular workshop on understanding sensory processing in ASD. 

• T: 0208 102 4008

Speech and Language Therapy  

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Speech and Language therapy offered at Cheyne is for pre-school children and by referral only.

Speech and Language therapy for school aged children is accessed via a referral from your GP or your child’s school. 

Clinical Psychology

The Clinical Psychology team offer mainly group support and consultations with school/nursery staff and other professionals for a range of difficulties (e.g. behaviour, emotional development sleep and feeding). 

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net

Local services: Hammersmith & Fulham 

The main location to find out what is available in your local area is the SEND (Special Educational Needs) ‘Local Offer’.

H&F: SEND Local Offer

Or search “Local Offer” and your local area. Each borough has a specific Autism page.

EarlyBird and EarlyBird Plus

EarlyBird (under five years) and EarlyBird Plus (ages four-nine) are additional support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children. Both programmes work on understanding autism, building confidence to encourage interaction and communication and analysing and managing behaviour.

The following service runs these courses, please contact them for further details:

• Hammersmith and Fulham INSPIRE team: 0208 753 1021

What is Autism?

We each have our own set of strengths and difficulties.

Autism spectrum disorder (ASD) describes a particular pattern of these strengths and difficulties across three main areas: 

Many children with autism also show differences in their sensory processing:

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different.

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging. 

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed: Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of.

What causes ASD?

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development.

Autism is not caused by a person’s upbringing or social circumstances.

Is my child’s autism “mild” or “severe”?

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example:

• The individual’s set of strengths and difficulties
• Their language skills i.e. their ability to safely and effectively communicate their needs to others
• Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
• Social factors e.g. having opportunities to socialise

A person may develop skills that help them manage or cope with their difficulties in certain situations and they may be better able to use these skills on some occasions more than others. A person’s difficulties will likely shift between “mild” and “severe” across settings and at various stages of their life.

Whilst your child may develop skills that help them cope or manage their (e.g. learning how to initiate a conversation), they may be better able to use these skills on some occasions more than others (e.g. with familiar adults compared to unfamiliar peers).

As strengths and difficulties change over time and across settings it is not possible to judge whether someone has “mild” or “severe” Autism. Autism is better understood as a spectrum. Gaining a clear understanding of your child’s individual strengths and difficulties is a useful first step when thinking about the support they will need after diagnosis.

The following visual guide explains what is meant by autism spectrum: https://autismanimated.com/dolph/m/feed/view/Understanding-thespectrum-a-comic-strip-explanation

Receiving a Diagnosis

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming. 

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be more unsure or how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional. 

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful.      

Telling your Child 

When to tell your child about their diagnosis is your decision. This will vary depending on you and your child. Some children may notice they are different and ask questions at a young age. Others may struggle to understand the concept of Autism until they are a bit older. 

There isn't one 'right' way to tell your child about their diagnosis, but it may help to take the following things into consideration: 

• Who is the best person in the family to bring up the subject? Who is the child most comfortable with? 
• Choose a good moment to bring it up, when the mood is calm and the environment is familiar. 
• Try to avoid being interrupted if possible as your child may have questions.
• Follow your child’s lead. It is often helpful to provide information over a series of small conversations rather than having one big conversation.  
• If your child asks you something that you are unsure about, it’s okay to tell them you don’t know but will find out and come back to them with an answer. 

The National Autistic Society suggests that a popular way to bring up the conversation about Autism is to talk about differences and think about family member’s strengths and weaknesses. Autism is just a particular pattern of strengths and weaknesses. For more information on how to tell you child, please visit the National Autistic Societies website: www.autism.org.uk

Below are some books which you may find useful: 

• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright
• I AM SPECIAL by Peter Vermeulen
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard 

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment that is provided by a member of the assessment team.

There can be a lot to take in during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Families can also often access support within their local community. 

Groups at the Cheyne

ASCEND

The ASCEND group is run by Clinical Psychology for parents/carers whose school-aged child has received a diagnosis of ASD. The group provides an opportunity to gain a greater understanding about what Autism is, what underlies difficulties and to develop strategies that can support your child’s social and emotional skills.  

Raising Healthy Eaters 

Raising Healthy Eaters is a program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists.

The Behaviour Group

The behaviour group is run by Clinical Psychologists for parents/carers whose child with additional needs has challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours.   

Sleep Well

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’ workshops for parents of children with additional needs who have difficulties sleeping.  

A member of the Cheyne team will refer you to these groups if it is appropriate. If you have any questions about these groups you can contact the Psychology team on CCDS.psychology@nhs.net  

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy  

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community.

Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties. 

The OT team also run a regular workshop on understanding sensory processing in ASD. 

• T: 0208 102 4008

Speech and Language Therapy  

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Speech and Language therapy offered at Cheyne is for pre-school children and by referral only.

Speech and Language therapy for school aged children is accessed via a referral from your GP or your child’s school.  

Clinical Psychology

The Clinical Psychology team offer mainly group support and consultations with school/nursery staff and other professionals for a range of difficulties (e.g. behaviour, emotional development sleep and feeding).

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net

Local services: Kensington & Chelsea  

The main location to find out what is available in your local area is the SEND (Special Educational Needs) ‘Local Offer’.

K&C: www.rbkc.gov.uk/localoffer 

Or search “Local Offer” and your local area. Each borough has a specific Autism page. 

EarlyBird and EarlyBird Plus

EarlyBird (under five years) and EarlyBird Plus (ages four-nine) are additional support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children. Both programmes work on understanding autism, building confidence to encourage interaction and communication and analysing and managing behaviour.

The following services run these courses, please contact them for further details:

• Autism and Early Years Intervention Team: 0207 854 5885 (RBKC & SW1)
• The Tresham Centre : 0207 641 5095
• Bessborough Family Hub: 0207 598 4917

The National Autistic Society West London Branch 

The West London Branch of the National Autistic Society was set up by a group of local parents in 2012. We are a purely voluntary group that campaigns for the boroughs of Westminster, Hammersmith & Fulham and Kensington & Chelsea. Anyone from West London can join us as a member and attend our events and activities. We have various social events lined up and we need you to Volunteer with us! If you are interested, please get in contact.                         

For information about Autism, Activities we run and activities by other organisations, have a look at our website, social media platforms or send us an email, become a member and receive information. 

• E: Westlondonbranch@nas.org.uk
• W: http://naswestlondonbranch.webeden.co.uk/  

Child and Adolescent Mental Health Service (CAMHS)

CAMHS provides a comprehensive range of targeted and specialist community mental health assessments and treatments for children and young people with moderate to severe mental health difficulties, learning disabilities, neurodevelopmental difficulties (such as ASD) and Attention Deficit Hyperactivity Disorder.

• T: 0208 383 6123 (RBKC)
• W: CAMHS :: Central and North West London NHS Foundation Trust (cnwl.nhs.uk)

Psychological Support for Parents (adults 18+)

Brief, talking therapies and counselling services are suitable for people experiencing feelings of low mood, anxiety and/or particular fears or problems coping with daily life and relationships. Westminster, Kensington & Chelsea and Hammersmith and Fulham offer a free, confidential NHS service which provides psychological treatment. You can be referred via your GP, other health professionals or by self-referral

• W: http://cnwltalkingtherapies.org.uk/refer-yourself  

Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to ASD awareness training. For the latest dates and to book onto a course, please contact Christa Morley by emailing Christa.Morley@rbkc.gov.uk or searching the local offer. 

Care Planning and Review Team 

This team will support Families with a child who has additional needs aged 5 -13 years. 

• New online Parenting Support sessions/Webinars
• Parenting groups: Early Bird, Early Bird Plus, Teen Life, Triple P
• Monthly Q and A sessions with Practitioners and other colleagues.
• On-going support from the Disabled Children's Centres- St Quintin and Tresham  Care Package Delivery
• Drop Ins
• Activity Sessions
• ASD Girls group
• Sibling Support

Preparing for Adulthood Team - Age 14 plus  

At 14-years, the child will transfer or can be referred into this team who will continue to provide support until the young person’s 18^th Birthday. The team will start to think about the future. For example, will the young person go to college or start to think about work?  They will also offer practical support for the young person to prepare for the next stage.

Short Breaks

Children with autism may be entitled to short breaks if they are affected in their everyday living by one or more of the following: severe physical, learning disability or sensory impairment, which is substantial and has a negative effect on their ability to do normal daily activities

Following diagnosis referrals are accepted, and can be requested by parents and professionals:

• T: 0207 598 4921 

Full of Life

Full of Life is a charity that supports and provides services to parents/carers and their disabled children/adults. They give free practical independent advice to parents/carers through their direct services including carers advocacy, family support, disability allowance and education. They also provide parent training groups and forums and services for young people (age 14+).

• T: 0208 962 9994
• E: office@fulloflifekc.com
• W: https://www.fulloflifekc.com/

Education: Full of Life Information and Advice and Support service (IASS)

The service offers independent advice, information and guidance on issues relating to SEN and Disability. The service is for parents of disabled children and young people.

• T: 020 8960 9064
• E: sen@fulloflifekc.com 
• W: https://www.fulloflifekc.com/sendiass/

West London Action for Children

West London Action for Children offers a range of counselling and therapy services for children and families in need who are based in the London boroughs of Hammersmith & Fulham and Kensington & Chelsea. We support families under stress to develop their confidence and skills to cope with the ordinary and extraordinary challenges of family life. Our services are primarily available to those on Income Support or receiving Tax Credits. 

• T: 020 7352 1155
• E: team@wlac.org.uk 
• W: https://www.wlac.org.uk/

K&C Tell it Parents Network

Tell It Parents Network runs a weekly drop in and 1:1 support where parents can access advice and support with a range of issues that impact on parenthood.

• T: 0207 289 7918
• E: admin@tellitparentsnetwork.co.uk
• W: https://tellitparentsnetwork.co.uk/

The Venture Centre Stay and Play (Sessions for families of children with special needs)

The Venture Community Association has partnered with local parent groups to offer a series of free stay and play sessions for families of children with special needs.

• T: 0208 960 3234
• W: www.venturecentre.org.uk

National Organisations

NAS (National Autistic Society)

The leading UK charity for people with Autism and their families. They provide information, support and pioneering services, and campaign for a better world for autistic people.

• T: 0808 800 4104
• W: https://www.autism.org.uk/  

Ambitious about Autism

The national charity for children and young people with autism. Their parent hub provides practical information and resources about ASD. They also have an online community for adults with autism, parents and professionals.

• T: 0208 815 544
• W: https://www.ambitiousaboutautism.org.uk/

The Autism Education Trust

Provides information and support relating to young people and their access to education. They also have specific information for children “child zone” and young people “the den”.

• T: 0207 903 3540
• W: https://www.autismeducationtrust.org.uk/

Scope

Provide support and information for people who have a physical impairment, learning disability or any other condition.

• W: https://www.scope.org.uk/

The Challenging Behaviour Foundation

A charity for people with severe learning disabilities and challenging behaviour. They offer information about challenging behaviour both online and over the phone or email.

• T: 0300 666 0126
• W: http://www.challengingbehaviour.org.uk/

Autism Links

Website providing practical information about services and resources for children and adults living with autism

• W: http://autismlinks.co.uk

Contact a family

They offer practical information and resources about support for families who have a child with a disability

• T: 0808 808 3555
• W: https://contact.org.uk/      

Sibs

Support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.

• W: https://www.sibs.org.uk/  

Cerebra

This is a great website with lots of leaflets to download. 

• T: 01267 244200
• W: www.cerebra.org.uk             

Independent Parental Special - Education Advice

A registered charity that offers free and independent legally based information, advice and support to help get the right education for children with special educational needs (SEN). They provide support with Local Authorities’ legal duties to assess and provide for children with special educational needs.

• T: 01799 582 030
• W: https://www.ipsea.org.uk                  

Understood

This website holds a compilation of different resources and information about attention and learning issues, school and learning, friends and feelings and family relationships. They provide customised advice and interactive tools based on a child’s issues and their conditions. 

• W: www.understood.org/en   

The Autism Directory

Created by parents, carers and professionals the Autism Directory signposts people to the wealth of information, support groups, autism friendly business and useful information. 

• T: 01443 844764
• W: www.theautismdirectory.com         

Eric

Eric is the children’s bowel and bladder charity and offers advice, parent workshops and a helpline to support toileting in children. 

• T: 0808 169 9949

Further Healthcare services 

Dietetics

The paediatric dietitians provide full nutritional assessment, diagnosis and advice on how best to meet the nutritional requirements for individual patients. Children and young people with diagnosed conditions- especially for those needing additional nutritional supplementation or advice.

Referral can be requested from your child’s GP, paediatrician or school nurse.

Dentistry

The specialist community dental service provides care for  children and young people who are unable to be treated in an ordinary dental practice. To access this they should be  registered with, a GP in Barnet, Hammersmith and Fulham, Kensington and Chelsea, and Westminster, referral by their local dentist, GP, or other healthcare professional..

• T: 020 7534 6524 / 6529 or 111 out of hours
• W: https://clch.nhs.uk/services/dentistry
• E: clcht.dental@nhs.net

Education Services  

Advice and support to parents/carers

Once your child has completed their assessment at Cheyne, we recommend that you arrange an appointment with the Special Educational Needs Coordinator (SENDCo) at your child’s school.

You might want to ask school the following questions:

• What progress is your child making?
• What support is being put in place for your child?
• Is your child on the school SEN support register?
• Is your child already known to the H&F Inspire Autism Outreach Team? If not, are school able to make a referral?
• How will your child’s progress be monitored/what are their targets?
• What will be done if your child does not make progress? 

State schools receive some funding to support children with special educational needs. For many children, the additional support offered by schools will be sufficient to meet their needs. It is important to note that not all children who receive a diagnosis of Autism Spectrum Disorder will need an Education and Health Care Plan (EHCP).  

There are many support strategies that schools and nurseries can put in place to support a child with ASD. Schools have access to educational psychology and autism outreach teachers, who can also speak to parents.

Schools should use this advice to implement an ‘Assess Plan Do Review’ cycle of planning and intervention for your child using their SEN resources. If, after this process has been running for some time, your child has not made adequate progress, you and the school may decide to apply for an EHCP.

What is an Education, Health and Care Plan? 

Education, health and care (EHC) plans look at your child’s needs and bring together education, health and care services to achieve agreed outcomes. The focus is very much on what is important for children and young people from birth to 25 years old. As parents/carers, you are much more involved in the process of agreeing your child’s plan. 

An Education Health and Care needs assessment can be requested by anyone, provided the parents agree and give their permission, or, in the case of young people who are over the age of 16, permission from the young person themselves.

Schools, colleges and other services and agencies provide evidence of the child's needs and progress, which will help to decide whether or not the assessment should proceed. Evidence should demonstrate that the child’s special educational needs:

• Are significant and complex 
• Have not responded to relevant and purposeful measures put in place by the school and supporting outside agencies 
• May call for support that cannot usually be provided by a mainstream school from its own resources 

If the local authority agrees to proceed with an Education Health and Care (EHC) needs assessment, this takes up to five months to complete, from the time of the initial request. During this time the local authority gathers information from parents/carers and all education professionals, therapists and doctors involved in your child’s care. This information will be used to draw up a plan which states what the nursery, school, or college, along with other services or agencies can do to help your child.

Educational Psychology Team 

Educational Psychologists work with young people (0-25), their schools/educational placements and families in order to help reduce barriers to learning. If you are worried about your child’s progress you should speak to the school SENCo in the first instance and ask them if they feel a referral to educational psychology might be appropriate.

Educational psychologists always seek parental permission before working with a child and value parental input as ‘experts’ in their knowledge of their child.

RBKC/Westminster Autism and Early Years Intervention Team

This Specialist Service supports children and young people with ASD within the school setting. Schools are encouraged to refer to the service. The team provides regular meetings with parents to discuss strategies and progress, resources for use at home where appropriate, links with other support group and access to ASD awareness training.

Further information can be found on the RBKC Local Offer page: https://www.rbkc.gov.uk/kb5/rbkc/fis/advice.page?id=n3OtP7-bx4o

Information and Advice Support Service (IASS)

Information and Advice Support Services (IASS) were formerly known as Parent Partnership Services (PPS). It provides independent advice and support to parents and carers of children and young people with special educational needs. This may include getting support at school, EHC Assessment and Plans, and general SEN advice, information and/support.

Kensington & Chelsea

• T: 0208 962 9994 
• Address: Full of Life, Kensal House Annex, 379 Ladbroke Grove, London, W10 5BQ

Financial Support 

Disability Living Allowance 

On top of any normal welfare benefits, you may be eligible to apply for Disability Living Allowance (which is paid for the child) and Carers Allowance. Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who:

• Is under 16
• Has difficulties  or needs much more looking after than a child of the same age who does not have a disability
• The allowance is non means tested, meaning this is awarded regardless of parental income 

You can request the benefit forms by calling: 0845 7123 456

Tax credits

Child Tax credits and Working Tax credits are available for those working but earning less than £16,000 per year per household. There is extra allowance made also in the Child Tax Credit for a disabled child, and more for a severely disabled child. 

• T: 0845 3003900

The Family Fund                

Financed by government and administered by the Rowntree Memorial Trust for children with a severe disability (and they include autism in this category). There is no formal means test to obtain funds from the Family Fund, though you are less likely to obtain help if your family income is over £23,000 per year or you have savings of over £8000. They have funding for over 80,000 families, so it is well worth applying. You can apply once a year every year for things such as a holiday, outings, transport costs etc. 

• T: 0845 130 4542                          

Cerebra

This is a small grant scheme offering practical assistance to improve the quality of life of children and young people to age 16 affected by neurological conditions.

Examples of grants made are:  Touch screen computers, holidays (up to £500), specialist car seats, approved therapies, trampoline, sensory toys, and specialist cycles.

• T: 01267 244216
• W: www.cerebra.org.uk

Disabled Parking Badges

You will need to fill in a Blue Badge application form. Please access Local offer for info.

Recreational Activities 

Cinema

The Vue, Odeon and PictureHouse cinemas do autism friendly screenings for families and schools. Contact them directly for details. 

Websites

• Autism-Friendly Screenings (picturehouses.com)
• Find Autism Friendly Cinema Screenings Near You | Dimensions (dimensions-uk.org)
• ODEON - Autism friendly
• Accessible Screenings | UKCA (accessiblescreeningsuk.co.uk)

Football Clubs 

Football clubs offer some disability football programmes.

• Chelsea FC: rob.searle@chelseafc.com
• QPR FC:conorm@qpr.co.uk 

Gambado

SEN & Autism Friendly FREE Soft Play Sessions at Gambado - Sessions available in Chelsea,

Beckenham and Watford: www.gambado.com  

Otakar Kraus Music Trust

This Music trust provides opportunities for young people with special needs.

• W: www.okmtrust.co.uk

Science Museum ‘Early Birds’ 

Early Birds enables families with children who have an Autistic Spectrum Condition to come along and enjoy the Museum free from the busy general public.

• T: 020 7942 4777
• W: www.sciencemuseum.org.uk

Legoland

Allow people with DLA/diagnosis letter to skip the long queues when entering the park and going on rides. Other theme parks provide this service also.

Lion King

The Lyceum theatre provide autism friendly showings in the West End.

Other

• Radar keys provide access to public disabled toilets. Cost= £4. Available at www.radar-shop.org.uk. Also available through HAFAD
• Groups that provide free horse-riding therapy are listed through the following organisation: Riding for Disabled Association. www.rda.org.uk
• Gatwick airport provide a sensory room whilst you are waiting at the airport and travelling support: Accessibility | Gatwick Airport

Useful Reading and Websites

• I AM SPECIAL by Peter Vermeulen - Introducing Children and Young People to their Autistic Spectrum Disorder
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright - Practical Strategies for Parents and Professionals
• THE SURVIVAL GUIDE FOR KIDS WITH AUTISM SPECTRUM DISORDERS by Elizabeth Verdick and Elizabeth Reeve
• HELPING YOUNG CHILDREN WITH AUTISM TO LEARN by Liz Hannah - A practical guide for parents and staff in mainstream schools and nurseries
• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike - A guide for parents and carers of children with an autism spectrum disorder
• SENSORY AND MOTOR STRATEGIES by Corinna Laurie - Practical ways to help children and young people on the autism spectrum learn and achieve
• AUTISM: UNDERSTANDING AND MANAGING ANGER by Andrew Powell
• IT CAN GET BETTER by Paul Dickinson and Liz Hannah - Dealing with common behaviour problems in young children with autism
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard
• A useful short film ‘Amazing Things Happen’ explains autism in a clear and positive way: https://www.youtube.com/channel/UCZYtA26fbFCYIecm-WsEaeQ
• https://www.autismeducationtrust.org.uk/kids-zone/ - an online resource for children on the autism spectrum 
• The Den - Autism Education Trust - an online resource for teens on the autism spectrum  

What is Autism?

We each have our own set of strengths and difficulties.

Autism spectrum disorder (ASD) describes a particular pattern of these strengths and difficulties across three main areas: 

Many children with autism also show differences in their sensory processing:

The way we understand the world depends on how our brain processes all of the information streaming through our senses. People who have autism process this information in a different way. They perceive their world and communicate with others in a way that may be considered unusual or different. 

These differences can make everyday life difficult for a person who has autism; their responses to situations may seem unexpected, unusual and sometimes challenging.

How is Autism different from Asperger’s, Atypical Autism and other forms of Autism?

In the past, Autism was categorised into different “types”. Now only one term is used when a child is diagnosed: Autism Spectrum Disorder (ASD). It may be useful to think of ASD as an “umbrella term” for the different “types” of Autism you may hear of.

What causes ASD?

ASD is referred to as a lifelong neurodevelopmental condition; this means it is present from birth and results from differences in brain development.

The exact cause of ASD is still being investigated. Research suggests that a combination of factors (genetic and environmental) may account for changes in brain development.

Autism is not caused by a person’s upbringing or social circumstances 

Is my child’s autism “mild” or “severe”?

All people with autism share three main areas of difficulty. The extent to which these difficulties impact on their life will vary according to a number of factors, for example:

• The individual’s set of strengths and difficulties
• Their language skills i.e. their ability to safely and effectively communicate their needs to others
• Any other conditions that affect information processing e.g. Attention Deficit Hyperactivity Disorder (ADHD)
• Social factors e.g. having opportunities to socialise

A person may develop skills that help them manage or cope with their difficulties in certain situations and they may be better able to use these skills on some occasions more than others. A person’s difficulties will likely shift between “mild” and “severe” across settings and at various stages of their life. 

Whilst your child may develop skills that help them cope or manage their (e.g. learning how to initiate a conversation), they may be better able to use these skills on some occasions more than others (e.g. with familiar adults compared to unfamiliar peers).

As strengths and difficulties change over time and across settings it is not possible to judge whether someone has “mild” or “severe” Autism. Autism is better understood as a spectrum. Gaining a clear understanding of your child’s individual strengths and difficulties is a useful first step when thinking about the support they will need after diagnosis. 

The following visual guide explains what is meant by autism spectrum: https://autismanimated.com/dolph/m/feed/view/Understanding-thespectrum-a-comic-strip-explanation      

Receiving a Diagnosis

When you first receive your child’s diagnosis of ASD it can be a lot to take in. Some families are expecting to receive a diagnosis whereas for other families it might come “out of the blue”. Either way, the emotional effects of the diagnosis can seem quite overwhelming.

Feelings and reactions vary from person to person; some people may feel worried, sad, relieved, guilty, angry or a combination of any number of feelings. Some people might be more unsure or how they feel or just feel numb. It is important to acknowledge all feelings and talk about these with somebody you trust or a health professional.

Family members are likely to have different reactions to the diagnosis and some may take longer than others to accept and understand the diagnosis. Sharing information from assessment reports, encouraging them to speak to professionals or attend a post-diagnosis parent group can be helpful. 

Telling your Child 

When to tell your child about their diagnosis is your decision. This will vary depending on you and your child. Some children may notice they are different and ask questions at a young age. Others may struggle to understand the concept of Autism until they are a bit older. 

There isn't one 'right' way to tell your child about their diagnosis, but it may help to take the following things into consideration: 

• Who is the best person in the family to bring up the subject? Who is the child most comfortable with? 
• Choose a good moment to bring it up, when the mood is calm and the environment is familiar. 
• Try to avoid being interrupted if possible as your child may have questions.
• Follow your child’s lead. It is often helpful to provide information over a series of small conversations rather than having one big conversation.  
• If your child asks you something that you are unsure about, it’s okay to tell them you don’t know but will find out and come back to them with an answer. 

The National Autistic Society suggests that a popular way to bring up the conversation about Autism is to talk about differences and think about family member’s strengths and weaknesses. Autism is just a particular pattern of strengths and weaknesses. For more information on how to tell you child, please visit the National Autistic Societies website: www.autism.org.uk

Below are some books which you may find useful: 

• AUTISM: TALKING ABOUT A DIAGNOSIS by Rachel Pike
• HOW TO LIVE WITH AUTISM AND ASPERGER SYNDROME by Chris Williams and Barry Wright
• I AM SPECIAL by Peter Vermeulen
• I HAVE AUTISM... WHAT'S THAT? by Kate Doherty, Paddy McNally and Eileen Sherrard

What happens next?

Consistent with national guidelines, after diagnosis we offer a follow-up appointment that is provided by a member of the assessment team.

There can be a lot to take in during the review appointment; emotions and questions are likely to arise once you have had time to process the diagnosis given to your child. We offer support to all families whose child has received a diagnosis of ASD.

Families can also often access support within their local community. 

Groups at the Cheyne

ASCEND

The ASCEND group is run by Clinical Psychology for parents/carers whose school-aged child has received a diagnosis of ASD. The group provides an opportunity to gain a greater understanding about what Autism is, what underlies difficulties and to develop strategies that can support your child’s social and emotional skills. 

Raising Healthy Eaters

Raising Healthy Eaters is a program aimed at supporting parents of children with additional needs who are experiencing difficulties with feeding or eating. This group is offered by Occupational Therapists and Clinical Psychologists

The Behaviour Group

The behaviour group is run by Clinical Psychologists for parents/carers whose child with additional needs has challenging behaviours. It aims to help parents understand their child’s behaviour and suggests strategies to change behaviours.   

Sleep Well 

The Clinical Psychology team and specialist nurses at Cheyne also run ‘Sleep Well’ workshops for parents of children with additional needs who have difficulties sleeping.  

A member of the Cheyne team will refer you to these groups if it is appropriate. If you have any questions about these groups you can contact the Psychology team on CCDS.psychology@nhs.net 

Other services at the Cheyne Child Development Service

Please discuss with a member of the assessment team if you would like to discuss a referral to another service within the Cheyne Child Development Service.

Occupational Therapy  

The Occupational Therapy Team works collaboratively with children, their families and school communities to enable children to achieve their potential within their occupations at school, home, and the wider community.

Our Occupational Therapists (OTs) may see a child or young person who requires help with: developing the skills needed to participate in self-care tasks (e.g. tooth brushing, toileting, washing, dressing, eating); participating in learning tasks (e.g. writing, using scissors, selecting and organising tools/belongings); positioning and posture to support participation in everyday activities; accessing play/leisure resources and physical access - this may include supporting a child with motor coordination difficulties.

The OT team also run a regular workshop on understanding sensory processing in ASD. 

• T: 0208 102 4008 

Speech and Language Therapy  

Paediatric Speech and Language Therapists work with children with a wide range of speech, language and communication needs. Speech and Language therapy offered at Cheyne is for pre-school children and by referral only.

Speech and Language therapy for school aged children is accessed via a referral from your GP or your child’s school.

Clinical Psychology

The Clinical Psychology team offer mainly group support and consultations with school/nursery staff and other professionals for a range of difficulties (e.g. behaviour, emotional development sleep and feeding).

• T: 0203 315 3196
• E: CCDS.psychology@nhs.net