On the road to recovery

Information for patients and relatives following critical illness

This booklet has been written to help prepare you for leaving the intensive care unit (ICU) and to answer some of the questions you and your family may have about your recovery and rehabilitation from critical illness.

Recovery from critical illness

Patients looked after in ICU are very seriously unwell and require life-saving treatment. This is known as critical illness. Some patients stay in ICU for a few days, for some patients this may be much longer. During your ICU stay you will have been looked after 24/7 by a specialist team of doctors, nurses and other staff who care for people who are critically unwell.

The amount of time it takes to recover from critical illness and ‘get back to normal’ is different for each person but can take a long time, sometimes up to a few months. Being ready to leave ICU is therefore an important step in your recovery. Your rehabilitation and recovery journey will continue on the hospital ward and beyond.

Rehabilitation is the process of psychological and physical recovery. This is one of the most important aspects on your road to recovery as it is about what you can do to return to a healthy life after your critical illness.

Leaving ICU

Before leaving ICU, the team will explain to you which ward you are going to and what to expect when you get there. Before leaving the unit you will meet one of our critical care outreach team nurses. They will discuss your recovery plan with staff on the ward you are going to and may also visit you on this ward.

Your recovery plan will include information about your rehabilitation goals and the plan to help you to get back to normal as quickly as possible. Depending on your needs, different members of the intensive care team may be involved in supporting you with this plan including doctors, nurses, physiotherapists, speech and language therapists, occupational therapists and psychologists. 

Information about what happens after ICU

Will I still see staff from the Intensive Care Unit?

Yes. Physiotherapists, speech and language therapists occupational therapists involved in your care will also visit you on your new ward and introduce you to your new therapy team. The intensive care psychology team may also see you on the ward during your hospital stay. This helps to ensure a smooth transfer of your care between staff in the intensive care unit and the ward, and that you are supported with your recovery plan throughout your hospital stay.

Which ward will I move to?

The ward you will move to will depend on the reasons for your stay on intensive care and the ongoing level of support you may need. The doctors, nurses and therapists will hand over your care to the ward consultant and the rest of the team.

Who will look after me on the ward?

On the ward you will continue to be treated by nurses, doctors and other healthcare professionals such as physiotherapists and dieticians. Your team of doctors will not be based on the ward but they will do a ward round once a day. If you do need to see a doctor at other times the ward team will contact them for you.  

Who else will I meet?

Physiotherapist

The intensive care physiotherapist will work closely with the ward physiotherapist to ensure a smooth transition from ICU to ward care. This will also ensure you can continue to work towards the rehabilitation goals you set on ICU. You will have therapy sessions on most days which may involve one or more therapists at the same time.

These sessions will focus on improving your muscle strength and general fitness as well as working towards independent activities such as standing, walking and climbing stairs.

In addition to these rehabilitation sessions you will also be provided with an exercise plan to complete independently.  Even though you are likely to feel tired, low in energy and may still need an oxygen mask it is very important you do your exercises. This will help you to recover as quickly as possible.

Occupational Therapist

An Occupational Therapist may also see you on the ward. The Occupational Therapist will review your ability to perform daily tasks, such as washing and dressing, to make things easier for you. This may include providing adaptive techniques and assistive equipment. The Occupational Therapist will also consider what you may need at home to increase your independence and safety when you are discharged from hospital.

The Occupational Therapists and Physiotherapists work closely together and may see you during the same treatment session. You may also be seen by a therapy assistant, who will help you to complete your rehabilitation program prescribed by your therapists.

Pharmacist

The ICU pharmacist will work closely with the doctors to optimise your medication during your stay in ICU.

You may have been given sedation and analgesia (painkillers) to keep you comfortable. Sometimes patients may experience side effects such as disorientation and vivid hallucinations from these medications. This is entirely normal and you will recover from these. However, if you would like to discuss any concerns about side effects, you can ask to speak to the pharmacist or doctor

When you start to recover, the pharmacist will ask you to provide details of regular medicines that you were on prior to admission. This is to ensure that, when appropriate, your medicines are restarted.

Some of the regular medicines that you normally take at home will be temporarily stopped on ICU as they will not be required at this time. As you recover from the acute phase of illness and are being prepared for discharge from ICU, some of those medications will be gradually reintroduced.

Psychologists

Psychologists work more and more as part of the specialist intensive care teams. Their role is to support patients recovering from critical illness, and their relatives and families, by providing information, advice and practical tips on coping with normal emotional reactions to being critically ill, such as feeling tearful, sad or low in mood as well as common problems experienced like trouble sleeping, or worry about being able to get back to normal, the effect of your illness on getting back to things that you used to do, or about changes in your appearance.

Please check with your team if psychologists are available at your intensive care unit.

Physical rehabilitation and Exercise

Exercise is important after being unwell as it helps you recover from your stay in ICU. It may take some time to get your strength back. The benefits of exercise are:

  • Strengthen heart and lungs
  • Rebuild muscles
  • Reduce stress
  • Helps sleep pattern
  • Improves movement in joints
  • Improves confidence

While in hospital you will continue to work with your physiotherapist to rebuild your strength, balance and function.  You will see them regularly to help achieve your goals and also work independently on your own exercise program that they have given you.

Your physical rehabilitation journey will continue after you discharge and you will be supported as much as possible to achieve your goals and try to return to your normal level of activity.

Will I be able to move around?

The team on the ward will help you to gradually increase the amount of physical activity you do. You may feel very tired at first.

Don’t worry, this is normal and will improve in time.

What if I still need help to get dressed?

You may need help with some personal care such as eating, dressing, washing and perhaps walking.

The healthcare staff will be there to help you and the occupational therapists will work with you to improve your independence with these tasks.

Will I be in pain?

There are many reasons why you may experience pain after your stay in intensive care. This may be as a result of some of the medical procedures you underwent while on the unit, you may have had surgery or have some painful stiff joints after prolonged bed rest.

Please let the nurse or the medical staff know at any time if you are in pain so that they can help ensure you are getting the right pain relief.

There are many forms of pain relief that can help you so please let us know if you have any concerns about your current analgesia.

The hospital’s pain team may also be involved in your care. It is important that your pain is controlled as pain may prevent you from getting moving or being able to breathe deeply and cough. This is very important to prevent chest infections and aid your physical recovery.

The intensive care team psychologists may sometimes work with doctors, nurses and physiotherapists to help patients who are worried about pain or causing further damage and to find ways to increase your confidence about achieving your rehabilitation goals.

When will I be discharged home?

The doctors, nurse, therapists and psychologists will work with you to achieve your goals, so that you can leave hospital as soon as possible.

Sometimes people will need further rehabilitation to reach their full potential. This may happen at home or in another inpatient facility. If this is something you need the team on the ward will discuss this thoroughly with you at the time.

Your GP will receive a summary of your stay in hospital so that they can follow up your care in the community.

When you have been ill, it can take quite a while to get back to feeling your normal self. Exactly how long this will take will depend on the length of time you have been ill, how much your illness has affected your body (for example if you have lost a lot of weight or muscle strength that you will need to rebuild gradually), or whether there are aspects of your lifestyle that you wish to change such as developing healthier eating habits, giving up smoking, reducing alcohol consumption etc. If you have had problems with your health, or with your mental health or addictions before you became critically unwell you may wish to have additional support with these once you are back home as part of your recovery plan..

Common questions about problems experienced after ICU

In this section we are looking at describing some common problems that can occur and give some practical suggestion to help you with these as well as where you can find more support if needed.

Please note:  this does not mean that you will suffer them but that these are the common things that patients who have been critically ill might experience during their recovery in hospital and once they are home.

Tiredness and exercise

I feel weak all the time—­ why?

Don’t be surprised if you feel very tired and weak at first. While you were ill your body took what it needed to survive from its stores in the muscle. This means they will have reduced in size and strength. This muscle loss happens faster for patients who have been on the breathing machine. 

Because of this you may feel tired very quickly even when you are not doing much, you may have difficulty climbing stairs and your balance might not be as good as it used to be. With regular exercise you can regain strength in your muscles and get back to doing all the things you enjoy doing.

Sleeping

I’m finding it hard to sleep— what can I do?

You may find that your sleeping pattern has changed. It may be more difficult to fall asleep or your sleep may be broken. This is normal.

If you are struggling to sleep at any time during your admission please inform someone. There are many ways we can help you with this including getting you one of our sleep well packs that include items that can help you sleep better e.g. eye masks, ear plugs, and helping you to ‘re-set’ usual night/day sleeping patterns where possible e.g. by ensuring natural light in the daytime and reducing noise and lights at night.

Also as you increase your activity you should find your sleep patterns return to normal. Exercise is best done in the morning to help you to sleep.

Using music relaxation exercises, managing stress or worry, or bad dreams that can also help improve sleep.

Common emotional reactions during recovery from critical illness

I’m finding that I feel emotional at times—why?

Many patients recovering from critical illness describe feeling like they are on an ‘emotional rollercoaster’. You may feel hopeful and confident sometimes, and tearful or irritable for no reason other times. This is a normal reaction to illness and will often settle over time.

Being physically weak and having to put a lot of effort into simple things, like dressing or moving around, can make you feel low in mood.  Sometimes it may seem that you will never get back to normal and any progress is very slow. It is common for your mood to fluctuate and you may feel you experience some of the following:

  • Feeling upset and tearful
  • Always feeling tired
  • Being quick-tempered and snappy
  • Feeling scared that you almost died
  • Worrying about getting ill again
  • Worrying about how long it's taking to recover
  • Being extra alert to physical bodily symptoms
  • Not wanting to do things you used to enjoy
  • Not wanting to be around others

While many experience these symptoms in hospital, some may continue to feel this way for some time once they are home. There may be many changes that you have to deal with, such as changes in lifestyle, work, appearance and your role within your family.  Talking with those close to you can be helpful and will help them understand how you are feeling. You may find that setting small realistic goals helps you see the progress you are making and feel better in yourself by giving you a sense of achievement. You may find keeping a diary helps this process. The team looking after you can guide you on what you can expect from yourself at this stage of your recovery.

It is important to be aware of how you are feeling as low mood and worry can slow down your recovery and can develop into problems such as depression and anxiety. Depression and anxiety are health conditions that affect people in different ways and can cause a variety of symptoms, both physical and emotional. These conditions often co-occur and can have a significant effect on your daily life. If you feel anxious or depressed lasting weeks or months, please speak to your GP, who will be able to advise you on different forms of treatment and sources of support in your community.

At the end of this booklet we have also listed websites where you can find more information and support about recovering from critical illness and how to access psychological support.  

I have bad dreams or nightmares about being in ICU— what can I do?

Some patients have bad dreams or even nightmares in ICU that may continue for a few days or even weeks after they have left ICU. The dreams may be pleasant, but can also be frightening or upsetting, as these dreams may seem so vivid that they seem real.

The experience of vivid dreams in ICU is very common. This is often due to ‘delirium’, or, ‘confusion’ due being critically ill (for example, due to infection, kidney or heart failure) or as a side-effect of the strong medications used in ICU (e.g. painkillers or sedatives).

The experience of vivid dreams is usually temporary, lasting a few days to a week, but can be very upsetting for some patients. Worry about bad dreams and can stop patients going to sleep at night, making them more tired in the daytime which affects their recovery. You may benefit from talking about your dreams to family, friends, or a member of staff. 

There a very helpful booklet on delirium written by ICU steps that you can download from the ICU steps website- information about ICU steps is provided at the end of this booklet.

Talking to the ICU doctors and nurses can also help to fill in ‘gaps’ in your memory for what happened, or to answer any questions you might have about your treatment and care in hospital.

I have ‘flashbacks’ or upsetting memories after traumatic events related to being critically unwell

Some patients may have experienced traumatic events relating to their experience of becoming critically unwell. For example, they may have had a serious accident, suddenly become unwell due to a serious illness or infection or had complications during surgery or labour.

In the days or weeks following stressful or traumatic events it is completely usual to experience flashbacks or upsetting memories, and to feel upset, tearful or scared.  About one in four people will experience traumatic stress reactions of this kind following a very stressful or traumatic experience

In most cases, memories of traumatic events will gradually ‘fade’. Talking through your experiences can help with or making sense of (processing) these.

Sometimes people prefer to talk to one or two people who are close to them or to a health care professional or psychologist who are trained to know how to support people who have experienced traumatic events.

It is okay to tell people if you don’t want everyone to ask you about your experiences, if talking about these is upsetting and makes you feel like you are ‘reliving’ these all over again. It can sometimes be helpful to prepare a short ‘script’ to tell people so they know how best to support you. For example, ‘ I really appreciate that you have asked about what happened, I was very ill and am not ready to talk about everything that happened yet as I need to focus on my recovery. I have great support from the hospital team. Is ok if I let you know when I am ready to talk?’

Things you can do if you experience flashbacks or bad dreams:

  • Remind yourself that these experiences happened in the past, and that you are safe now
  • Calm your breathing by slow deep breaths in while counting to 5, then breathing out slowly while counting to 5
  • Focus on something neutral in the room (a painting, the view from the window etc). Try to describe it to yourself in as much detail as possible (what colours/textures/patterns/images do you see)

Do I have PTSD?

Post-traumatic stress disorder (PTSD) is a mental health condition that can occur after traumatic events such as a life-threatening illness. PTSD symptoms include:

  • re-experiencing the trauma through vivid and distressing memories or dreams
  • avoiding situations that remind them of the traumatic event
  • feeling emotionally numb or ‘detached’ as if the event happened to someone else
  • feeling  on ‘ constant alert' - watching out for new danger

It is important to remember that many of these symptoms get better in time with support from family and friends. It is important to talk to your GP and seek help if these symptoms are troubling you, however.

Useful information about PTSD and how to access help is provided at the end of this leaflet.

I’m feeling guilty—why?

Some survivors of critical illness experience guilt and worry about the impact that their ICU stay has had on friends and family.

It is important to be open with one another and discuss your thoughts and feelings. You have all experienced critical illness from different perspectives and there is no need to feel guilt.

Some patients find it helpful to talk to others who have had similar experiences. The ICU steps charity runs online forums and support groups for patients (see contact details at end of this booklet). Patients may also wish to attend one of the ‘focus groups’ the ICU team run for patients and relatives once they are back home. Please contact the ICU team for more information about these.

I look different—why?

You may experience some changes in your appearance, for example, hair loss or weight loss. These are quite common after critical illness but improve as you continue to recover.

The skin on your hands and feet may become dry and shed. These changes are temporary. Moisturising your skin regularly can help to stop this.

Your nails may develop ridges where the nail has stopped growing when you are ill and restarts again when you are recovering. This ridge will grow out with time.

You may have some scars from surgery or drips. Scars can sometimes be treated with massage and laser surgery. Your GP can help with this.

Memory Problems

I do not remember my stay on the ICU—why?

Some patients leaving the ICU may have little or no memory of being on the Unit. Asking, your family and friends about what happened can help to ‘fill in the gaps’. 

The ICU team can provide you with information about what happened to you during your ICU stay, the nurses who looked after in you in ICU may also have kept a diary to help with this. Patient diaries are usually kept for patients who have been on a ventilator and sedated for more than 48 hours.

We can be contacted at any time to answer any questions you may have via our

I am having trouble with forgetfulness or concentration

During your recovery you may also have trouble with short term memory, confusion and difficulties concentrating. This can be due to the medication you may have received while in the ICU. Asking a friend or relative to keep a note of any important information or questions you have about your illness or treatment can help during your stay. In most cases this should also improve with time.  If they do not improve within a few months, please speak to your GP to ask to be referred to have these problems assessed.

Patients who have had strokes or brain injuries may experience longer-term problems with memory, concentration or problem-solving. You may be offered assessment or rehabilitation to help with these by a specialist team during your hospital stay or once you get home.

Speaking and eating

Why has my voice changed?

You may find your voice has become husky or very weak. This is probably because you have had a tube inserted into your windpipe to help you with your breathing.

This may irritate the throat and vocal cords making it difficult to swallow and talk. In time this should improve. However if you are having problems with your speech and swallowing the speech and language therapist will work with you to help improve this.

Food tastes different—why is this?

Getting better depends on eating well. It is very likely that you were fed through a tube into your stomach or via a drip into your vein while you were on ICU

As a result of this, you may find that you have lost your appetite, your mouth may be sore and food doesn’t taste the same. It may taste metallic, saltier or sweeter than usual.

It is important to remember that this is only temporary and it is best to concentrate on foods that you do like and leave the ones that don’t appeal to you for now. You can try them later on when your taste is back to normal.

You may find it easier to eat small meals and have nourishing snacks in between if you get hungry. Remember “little & often”, and have 5–6 small meals or snacks, rather than 2–3 larger meals. Choose nutritious drinks such as milk and do not fill up on tea or coffee. Remember that drinking before a meal can fill you up. You can see a dietician for more help with this. You can also ask relatives or friends to bring in food from home that you normally enjoy.

Take your time, eat slowly and relax afterwards. If you’ve lost interest in food think of a food where the smell or sight of it usually makes you look forward to tasting it, then try a small portion

If you’re still struggling to eat and drink enough when you leave ICU a dietician can come and see you on the ward. If you need help to eat and drink - please ask your friends, family or nursing staff to help you.

I find I am sometimes passing small amounts of urine before I get to the toilet— when will I be able to go to the toilet normally?

Many patients with critical illness require long periods of bed rest and urinary catheterisation (this is where a tube is used to collect urine from the bladder).

Long term use of a catheter can lead to urinary incontinence—ie the loss of urine without being able to control it.

This is because the muscles and signals that control your bladder become weak from not being used.

Symptoms may include increased frequency, which is the need to urinate too often during the day or stress incontinence which is the leakage of urine with effort (jumping, sneezing or coughing).

This incontinence may improve as you get stronger and begin to move around more but pelvic floor exercises may also help.

If you are still concerned about this you can ask for advice from your physiotherapist or ask your GP for specialist advice from a specialist physiotherapist.

I would like to resume my sexual relationship with my partner—will my illness affect this?

It's normal to be worried about when it's safe to start having sex again. Your partner is likely to be worried about this too.

You may be concerned about the following.

  • Will my scars be healed enough?
  • If I have to use a medical device, such as a colostomy bag, catheter or pacemaker, will it get in the way?
  • Will I hurt or ache too much?
  • Will I have the strength?
  • What if my partner doesn't want to have sex?
  • What if I can't continue or can't reach an orgasm?

You may worry because you don't know what will happen. If you're worried about your strength, compare the energy needed for sex with the energy you need for your exercises. If you're coping well with your exercises, you may be able to cope with sex.

Most people find it difficult to talk about sex, but try to relax and keep a sense of humour. Take things slowly and see what happens.

Sometimes, medical problems such as impotence also can affect your sex life. If you're worried, talk to your GP.

Support

Sometimes as a patient or carer you need to talk to someone who has been through the same experience as you. This makes you feel less isolated and gives you hope that what you are experiencing is normal and will get better. In this section we identify what we do on the unit and also give a list of useful contacts.

Follow up by the ICU Team

The ICU team can arrange for you to have a follow up appointment or telephone call with one of the doctors or nurses who was involved in your care This can be helpful if you feel you would like more information about any aspect of your medical treatment in ICU. One of the ICU nurses who looked after you may also contact you once you leave ICU to offer to go through a diary of your stay.

If your team includes psychologists, you may also be contacted and asked to fill in some questionnaires about how you are feeling emotionally once you are back home as well as other problems you may be experiencing such as sleep problems, or forgetfulness. The psychologist may then provide you with further information about how to access any further help or support you may need.

ICU focus groups

We have been facilitating focus groups on the ICU since 2005. The focus group, which runs at least twice a year, are made up of 5–8 former patients and relatives/ friends who have been on Chelsea and Westminster ICU.

The purpose of the groups is to gain an insight into the experience they have had while in our care. This helps to identify areas where we can improve our service.

The focus groups are also a way of letting patients and relatives tell their story to each other and a way of helping them understand what they have been through.

Useful contacts

ICU Chelsea and Westminster: 02033158518

ICU West Middlesex: 02083215834

Here are a number of self-help groups and support groups in the community that you and your family may find useful once you have left hospital.

Some of the information in this booklet was taken from the booklet Intensive Care: A guide for patients and relatives.

ICU steps is the UK's only charity dedicated to providing information and support to patients recovering from critical illness during their long recovery.

There is lots of other useful information for patients and their families on this website.

Asthma UK

A charity dedicated to improving the health and wellbeing of people in the UK whose lives are affected by asthma.

Helpline: 0300 222 5800

Website 

British Heart Foundation

A charity that gives information and support on the health of your heart.

Helpline: 0300 330 3311

Website

British Association for Counselling and Psychotherapy

For details of counsellors and psychotherapists in your area.

Phone: 01455 883300

Website

Carers Trust

Carers Trust is the largest provider of support services for carers in the UK.

Helpline: 0300 772 9600

Website

Citizens Advice

The Citizens Advice service helps people deal with their legal, money and other problems by providing free, independent and confidential advice.

Helpline: 03444 111 444

Website

Critical Care Recovery

A website created by researchers, patients, family members, health care staff based on over 120 interviews with former Intensive Care patients and family members at different stages of recovery.

Website

Diabetes UK

The largest charity in the UK for the care and treatment of people with diabetes.

Helpline: 0345 123 2399

Website

Healthtalk

A helpful website covering a wide variety of personal experiences of health and illness. It includes video interviews of people who have been through different illnesses and includes sections for intensive care patients and their relatives.

Website

Stroke Association

An organisation that provides support and information on strokes and guidance on coping with life after a stroke.

Helpline: 0303 303 3100

Website

UK Sepsis Trust

The Trust promotes awareness of sepsis, and provides support to those affected by it.

Helpline: 0800 389 6255

Website

Emotional and mental health support

Psychological therapies, also known as ‘talking therapies’, are free on the NHS and can be accessed from your local community mental health service. You can be referred by your GP or many services accept self-referrals. Check the NHS website to locate your nearest service.

Mind is a national mental health charity which provides advice and support to people experiencing mental health problems. On their website there is lots of useful information on mental health problems such as depression, anxiety and PTSD, including how to access help and support.

How to get help in a crisis or emergency

If you feel like you might attempt suicide, or may have seriously harmed yourself, you need urgent medical help. Please:

  • call 999 for an ambulance
  • go straight to A&E, if you can

If you can keep yourself safe for a short while, but you still need urgent advice:

  • contact NHS 111 if you live in England
  • contact NHS 111 or NHS Direct (0845 46 47)

Samaritans provides confidential, emotional support, 24 hours a day, for people who feel distressed, desperate or suicidal. Helpline: 116 123

Website

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