Transition to adult services

This page is for families and young people cared for by Cheyne Child Development Service (CCDS).

On this page

Overview

Transition describes the process of moving from being a child to becoming an adult. It is not a single event but a gradual process. Your young person should be supported throughout their teenage years and into adulthood to build their confidence and ability to manage the care and support they need, where they have capacity to do so.

Your young person may need support from a range of services as they move into adulthood. This page focuses on the support they may need from health services.

At CCDS, we start talking about transition from age 12. Transfer (the official move to adult services and discharge from CCDS) usually happens between 16 and 19, depending on health needs, education arrangements and readiness.

The process is guided by national standards (NICE, NCEPOD, Together for Short Lives) and our local West London Children’s Hospital policy.

Stages of transition

  • Early transition preparation (age 12 to 14): early conversations, goal-setting and preparing families for changing roles.
  • Preparing for moving on (age 14 to 18): multi-agency planning, annual reviews and a holistic transition plan developed with the young person and family.
  • Settling into adult services (age 16 to 19): handover completed, named worker or adult team in place and families and young people supported to feel confident in adult services.

What to expect

  • Age 12 to 13: introduction to transition, confidentiality explained and independence goals set. A transition plan is started and reviewed annually.
  • Age 14+: if your child has a learning disability, their GP should offer a free annual health check every year.
  • Pre-transfer (age 16 to 19): where possible, joint meetings with adult services, hospital passport completed (for those with a learning disability) and clear handover plans.
  • Transfer of care (age 16 to 19): the young person is safely established in adult services.

Confidentiality

  • As young people grow up, it is important that their views are heard and respected. From the age of 16, the law assumes that most young people have capacity to make their own decisions. This means health professionals will usually speak with them directly and keep information private, unless the young person agrees to share it with parents or carers.
  • Families are encouraged to stay involved, but decisions rest with the young person if they have capacity.
  • If a young person does not have capacity to make certain decisions, information is shared with parents or carers as part of a best interests process. Professionals, families and the young person (as far as possible) work together to decide what is safest and most appropriate. The guiding principle is to involve the young person as much as possible while ensuring they are supported and protected.

Understanding learning disability

In early childhood, some children are diagnosed with global developmental delay (GDD) or global developmental impairment when they are developing more slowly across several areas such as talking, moving, learning and understanding, compared with other children of the same age.

  • This diagnosis is often used in the preschool years, as it can be too early to know whether a child will catch up or whether the difficulties will be lifelong.
  • As children grow older, usually by school age, professionals can better assess their progress.
  • If the difficulties are significant and lifelong, the diagnosis usually changes from GDD to a learning disability (sometimes called an intellectual disability).

A learning disability affects how a person understands information, learns new skills and manages daily life. It is not an illness and does not go away, but with the right support, children and young people can thrive and achieve their potential.

Annual health checks from age 14

The NHS offers an annual health check for people with a learning disability from age 14. These checks take place at the GP surgery and are a chance to look at physical and mental health in more detail.

Young people need to be on the GP learning disability register to be invited for an annual health check. At CCDS, we ask GPs to add eligible young people to the register, but this does not always happen automatically. Families can also ask their GP practice directly for their child or young person to be added. Bringing clinic letters that mention learning disability can help.

Not all young people who are eligible for the register will have a formal diagnosis. If a young person has significant difficulties with learning and daily life, they may still meet the criteria. It is worth checking with your paediatrician or GP.

The health check usually includes:

  • weight, blood pressure, eyesight and hearing checks
  • medication review
  • making sure vaccinations and screening are up to date
  • discussion about diet, exercise, sleep and emotional wellbeing

Annual health checks are in addition to specialist or community appointments (for example, paediatric reviews). Attending also helps young people develop a relationship with their GP, which is important because the GP often becomes key in coordinating care once paediatric services end.

Adult learning disability team

Across Hammersmith and Fulham, Kensington and Chelsea and Westminster, there is an Adult Learning Disability Team. This specialist service supports adults with a learning disability in areas such as health, social care, daily living, independence and community inclusion.

  • Referrals can be made from age 16 to support planning and clarify a learning disability diagnosis if one has not already been made.
  • A formal learning disability diagnosis is required to be eligible for this service. The team usually begins working directly with young people once they turn 18.

The teams are made up of:

  • social workers
  • clinical psychologists
  • community nurses
  • physiotherapists
  • speech and language therapists
  • psychiatrists
  • occupational therapists
  • support workers

They work closely with NHS colleagues, housing services and local community organisations. Together, they provide support tailored to individual needs, aiming for a smooth, well-coordinated transition into adult services.

Specialist learning disability nurses in hospital

Hospitals have specialist Learning Disability (LD) Nurses who support adults with a learning disability when they come in for treatment. They help staff understand communication needs, arrange reasonable adjustments (such as quieter spaces or Easy Read information) and support decision-making under the Mental Capacity Act. They can also act as a link between the hospital, families and community services.

Local contacts

Transition in education and social care for those with learning disabilities

For young people with a learning disability, transition in education and social care is about preparing for adulthood and making sure support continues beyond school.

Preparation for adulthood is built into the Education, Health and Care Plan (EHCP) annual review. From Year 9 (age 13 to 14), annual reviews must include a focus on preparing for adult life. This includes goals around education, employment, independent living and community participation.

Health and support in adulthood

Your GP as the main point of contact

When young people move into adulthood, the way health services are organised changes. During childhood, many families are used to having a paediatrician who coordinates care. Once a young person turns 18, the GP becomes the main point of contact for all health needs.

  • The GP is the gateway to most services, including specialist hospital care, community health teams and mental health services.
  • Building a good relationship with the GP is important, as they coordinate care and make referrals when needed.
  • For young people with a learning disability, this is one reason why attending the annual health check from age 14 can be helpful.

Continuing healthcare

Some adults with very complex needs may be eligible for NHS continuing healthcare (CHC). This is NHS funding for ongoing care when a person’s primary need is health-related. Eligibility is decided through an assessment process.

Mental health support into adulthood

Mental health services also change as young people get older. Understanding what is available can help families prepare for transition.

  • Community adult mental health services: some services can start supporting young people from age 16 (local criteria apply).
  • Common mental health problems (depression, anxiety): young people aged 16+ can usually self-refer to local NHS talking therapies services.
  • Perinatal and maternal mental health services: for women and partners who are pregnant or have a baby under 2 years old and are experiencing moderate to severe mental health problems (local access routes apply).
  • Eating disorder services:
    • Westminster and Kensington and Chelsea: eating disorder services support all ages and focus on moderate to severe eating disorders such as anorexia nervosa and bulimia.
    • Hammersmith and Fulham: adult eating disorder services can be accessed from age 18. Up to age 18, this is provided by West London CAMHS Eating Disorders service for eligible boroughs.
  • Serious and enduring mental illness: from around age 17.5, young people with significant ongoing mental health needs may be referred to adult mental health services. These teams are multi-disciplinary and may include nurses, doctors, psychologists, occupational therapists, counsellors and social workers.

More information about local services

Hammersmith and Fulham: West London NHS Trust offers a range of wellbeing and mental health services for adults living in Ealing, Hammersmith and Fulham and Hounslow. Most adult services accept referrals from age 18, and some can start supporting young people from age 16.

Westminster and Kensington and Chelsea:

Mental capacity and what it means

From age 16, the law assumes that young people can make their own decisions about health, education and daily life unless there is clear evidence that they cannot. This comes from the Mental Capacity Act (MCA) 2005, which sets out how decisions should be made and who should be involved.

The five principles of the Mental Capacity Act

  1. Start with the presumption of capacity.
  2. Give the person the right support to make their own decisions.
  3. Making an ‘unwise’ decision does not mean someone lacks capacity.
  4. Any decision made for someone else must be in their best interests.
  5. Use the least restrictive option available.

What do we mean by capacity?

  • Having capacity means being able to understand, remember, weigh up and communicate the information needed to make a particular decision.
  • Capacity is decision-specific. A young person may be able to decide everyday things but find more complex decisions harder (for example, medical treatment or finances).
  • Capacity can change over time. Being unwell, anxious or very tired can affect capacity in the moment.

If a young person has capacity

  • Their views and choices must be respected, even if professionals or family members do not agree.
  • Professionals should make information accessible (for example, Easy Read materials, pictures or interpreters if needed).

If a young person does not have capacity

  • Decisions must be made in their best interests.
  • The young person should be involved as much as possible, and their wishes and feelings should be considered.

What happens at 18 and beyond?

  • The Mental Capacity Act continues to apply in adulthood.
  • Families may need to apply to the Court of Protection for legal authority to make decisions (known as deputyship).
  • In some situations, a simpler arrangement such as becoming an appointee for benefits may be enough.

Deputyship

Some young people reaching adulthood (18+) may not have mental capacity to make important decisions. In these cases, parents or carers may need legal authority to act on their behalf. This is called deputyship.

What is deputyship?

  • A deputy is appointed by the Court of Protection.
  • Deputies are usually family members.
  • Deputyship can cover property and financial affairs, or personal welfare.

How is this different from being a parent?

  • At 18, parents no longer have automatic legal rights to make decisions.
  • Without deputyship, organisations may not allow families to act for the young person.

When might it be needed?

  • managing money, benefits and bills
  • making financial decisions
  • sometimes for major health or welfare decisions

How to apply

Families apply to the Court of Protection and will need medical evidence to support the application. The process involves completing forms, providing supporting documents and paying a fee.

Education, Health and Care Plans (EHCPs) and transition

Many young people at CCDS have an Education, Health and Care Plan (EHCP). Transition planning in health links closely with education and social care.

Year 9 annual review (age 13 to 14)

  • EHCP reviews must include a preparing for adulthood focus.
  • Reviews cover independent living, employment, community life and health.

Ongoing annual reviews

  • Each year, the EHCP should include updates from health and other agencies and clear actions for transition.
  • Families receive an updated EHCP if significant changes are made, or if the young person is transitioning to a different setting.
  • Planning considers support in further education, college, training or employment.
  • If education or training continues, the EHCP can remain in place until age 25.

How CCDS supports this

  • Health reports from review appointments can be shared at the EHCP annual review.
  • Transition planning can be shared with schools, colleges and local authorities.

Money and benefits

Disability Living Allowance (DLA) and turning 16

When a young person turns 16, Disability Living Allowance (DLA) usually ends and they may be invited to apply for Personal Independence Payment (PIP). PIP is the main benefit for people aged 16 and over who have a disability or health condition that affects daily living and/or mobility.

  • The move from DLA to PIP is not automatic. Families need to make a new application for PIP.
  • The application involves a form and an assessment. It is important to explain how the young person’s needs affect day-to-day life and independence.
  • To reduce the risk of a gap in payments, apply for PIP as soon as the Department for Work and Pensions (DWP) invites you to.

Other financial support

Depending on circumstances, young people and families may also be eligible for other support, such as:

  • Carer’s Allowance (if someone provides 35 hours a week or more of care)
  • Employment and Support Allowance (ESA) or Universal Credit
  • help with housing costs or council tax reduction

Families may find it helpful to seek advice from Citizens Advice, the local authority or a disability charity when applying.

Transition plans

As young people prepare for adulthood, a transition plan captures what matters most to them: their goals, needs and the support that helps them thrive. This might include communication preferences, health needs, education or work ambitions, friendships and future living arrangements.

Having this written down helps everyone work towards the same outcomes. It can be especially helpful when the young person meets new professionals or attends hospital, as it reduces stress, avoids repeating information and supports joined-up care across services.

A transition plan might include:

  • how the young person communicates and how best to support them
  • important health information (for example, medication, allergies and health conditions)
  • education and employment goals
  • hobbies, friendships and social activities that matter to them
  • daily living skills and support needs
  • hopes for the future, such as living arrangements or independence goals

CCDS provides a Transition Plan document to help you create your plan. You can complete this yourself, share it digitally with the team and bring it to appointments.

Download: CCDS Transition Plan and Transfer Document (coming soon)

Useful resources