Transition from children's to adults' services for young people using health or social care services

This guideline covers the period before, during and after a young person moves from children's to adults' services. It aims to help young people and their carers have a better experience of transition by improving the way its planned and carried out. It covers both health and social care.

# Recommendations
People have the right to be involved in discussions and make informed decisions about their care, as described in NICE's information on making decisions about your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including offlabel use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

# Overarching principles
Involve young people and their carers in service design, delivery and evaluation related to transition by:
coproducing transition policies and strategies with them
planning, coproducing and piloting materials and tools
asking them if the services helped them achieve agreed outcomes
feeding back to them about the effect their involvement has had.
Ensure transition support is developmentally appropriate, taking into account the person's:
maturity
cognitive abilities
psychological status
needs in respect of longterm conditions
social and personal circumstances
caring responsibilities
communication needs.
Ensure transition support:
is strengths-based and focuses on what is positive and possible for the young person rather than on a predetermined set of transition options
identifies the support available to the young person, which includes but is not limited to their family or carers.
Use person-centred approaches to ensure that transition support:
treats the young person as an equal partner in the process and takes full account of their views and needs
involves the young person and their family or carers, primary care practitioners and colleagues in education, as appropriate
supports the young person to make decisions and builds their confidence to direct their own care and support over time
fully involves the young person in terms of the way it is planned, implemented and reviewed
addresses all relevant outcomes, including those related to:
education and employment
community inclusion
health and wellbeing, including emotional health
independent living and housing options
involves agreeing goals with the young person
includes a review of the transition plan with the young person at least annually or more often if their needs change.
Health and social care service managers in children's and adults' services should work together in an integrated way to ensure a smooth and gradual transition for young people. This work could involve, for example, developing:
a joint mission statement or vision for transition
jointly agreed and shared transition protocols, informationsharing protocols and approaches to practice.Note: For young people with education health and care plans (see the gov.uk guide), local authorities and health commissioners must work together in an integrated way, as set out in the Children and Families Act 2014.
Service managers in both adults' and children's services, across health, social care and education, should proactively identify and plan for young people in their locality with transition support needs.
Every service involved in supporting a young person should take responsibility for sharing safeguarding information with other organisations, in line with local informationsharing and confidentiality policies.
Check that the young person is registered with a GP.
Consider ensuring the young person has a named GP.

# Transition planning

## Timing and review
For groups not covered by health, social care and education legislation, practitioners should start planning for adulthood from year 9 (age 13 or 14) at the latest. For young people entering the service close to the point of transfer, planning should start immediately. Note: For young people with education, health and care plans this must happen from year 9, as set out in the Children and Families Act 2014. For young people leaving care, this must happen from age 15-and-a-half.
Start transition planning early for young people in outofauthority placements.
Ensure the transition planning is developmentally appropriate and takes into account each young person's capabilities, needs and hopes for the future. The point of transfer should:
not be based on a rigid age threshold
take place at a time of relative stability for the young person.
Hold an annual meeting to review transition planning, or more frequently if needed. Share the outcome with all those involved in delivering care to the young person. This meeting should:
involve all practitioners providing support to the young person and their family or carers, including the GP (this could be either in person or via teleconferencing or video)
involve the young person and their family or carers
inform a transition plan that is linked to other plans the young person has in respect of their care and support. Note: For young people with a child in need plan, an education, health and care plan or a care and support plan, local authorities must carry out a review, as set out in the Children Act 1989, the Children and Families Act 2014 and the Care Act 2014.

## A named worker
Help the young person to identify a single practitioner  who should act as a 'named worker'  to coordinate their transition care and support. This person could be supported by an administrator.
The named worker:
could be, depending on the young person's needs:
a nurse, youth worker or another health, social care or education practitioner
an allied health professional
the named GP (see recommendation 1.1.9)
an existing keyworker, transition worker or personal adviser
should be someone with whom the young person has a meaningful relationship.
The named worker should:
-versee, coordinate or deliver transition support, depending on the nature of their role
be the link between the young person and the various practitioners involved in their support, including the named GP
arrange appointments with the GP where needed as part of transition
help the young person navigate services, bearing in mind that many may be using a complex mix of care and support
support the young person's family, if appropriate
ensure that young people who are also carers can access support
act as a representative for the young person, if needed (that is to say, someone who can provide support or advocate for them)
proactively engage primary care in transition planning
direct the young person to other sources of support and advice, for example, peer advocacy support groups provided by voluntary and community sector services
think about ways to help the young person to get to appointments, if needed
provide advice and information.
The named worker should ensure that the young person is offered support with the following aspects of transition, if relevant for them (which may include directing them to other services):
education and employment
community inclusion
health and wellbeing, including emotional health
independent living and housing options.
The named worker should:
support the young person for the time defined in relevant legislation, or a minimum of 6 months before and after transfer (the exact length of time should be negotiated with the young person)
hand over their responsibilities as named worker to someone in adults' services, if they are based in children's services.
For disabled young people in education, the named worker should liaise with education practitioners to ensure comprehensive studentfocused transition planning is provided. This should involve peer advocacy, and friends and mentors as active participants.

## Involving young people
Offer young people help to become involved in their transition planning. This may be through:
peer support
coaching and mentoring
advocacy
the use of mobile technology.
Service managers should ensure a range of tools is available, and used, to help young people communicate effectively with practitioners. These may include, for example:
ways to produce a written record of how a young person communicates, for example, communication passports or 1page profiles
ways to help the young person communicate, for example, communication boards and digital communication tools.

## Building independence
Include information about how young people will be supported to develop and sustain social, leisure and recreational networks in the transition plan.
Include information and signposting to alternative nonstatutory services, including conditionspecific support services, in transition planning. This may be particularly important for people who do not meet the criteria for statutory adult services.
Put young people in touch with peer support groups if they want such contacts. This type of support:
may be provided by voluntary and communitysector organisations, such as specific support groups or charities
should be provided in a way that ensures the safety and wellbeing of the young people involved.
Consider providing opportunities for young people to have individual peer support and mentoring during transition from children's to adults' services.
If the young person has longterm conditions, ensure they are helped to manage their own condition as part of the overall package of transition support. This should include an assessment of the young person's ability to manage their condition, selfconfidence and readiness to move to adults' services.
For detailed recommendations on supporting lookedafter children moving to independent living see the section on preparing for independence in NICE's guideline on looked-after children and young people.

## Involving parents and carers
Ask the young person regularly how they would like their parents or carers to be involved throughout their transition, including when they have moved to adults' services.
Discuss the transition with the young person's parents or carers to understand their expectations about transition. This should include:
recognising that the young person's preferences about their parents' involvement may be different and should be respected
taking into account the young person's capacity, following the principles of the Mental Capacity Act and other relevant legislation, as necessary.
Help young people develop confidence in working with adults' services by giving them the chance to raise any concerns and queries separately from their parents or carers.
Adults' services should take into account the individual needs and wishes of the young person when involving parents or carers in assessment, planning and support. For young people with an education, health and care plan or a care and support plan this must happen, as set out in the Children and Families Act 2014 and the Care Act 2014.

# Support before transfer
Children's and adults' service managers should ensure that a practitioner from the relevant adult services meets the young person before they transfer from children's services. This could be, for example, by:
arranging joint appointments
running joint clinics
pairing a practitioner from children's services with one from adults' services.
Children's and adults' service managers should ensure that there is a contingency plan in place for how to provide consistent transition support if the named worker leaves their position.
Consider working with the young person to create a personal folder that they share with adults' services. This should be in the young person's preferred format. It should be produced early enough to form part of discussions with the young person about planning their transition (for example, 3 months before transfer). It could contain:
a 1page profile
information about their health condition, education and social care needs
their preferences about parent and carer involvement
emergency care plans
history of unplanned admissions
their strengths, achievements, hopes for the future and goals.
All children's and adults' services should give young people and their families or carers information about what to expect from services and what support is available to them. This information should be provided early enough to allow young people time to reflect and discuss with parents, carers or practitioners if they want to (for example, 3 months before transfer). It should:
be in an accessible format, depending on the needs and preferences of the young person (this could include, for example, written information, computerbased reading programmes, audio or braille formats for disabled young people)
describe the transition process
describe what support is available before and after transfer
describe where they can get advice about benefits and what financial support they are entitled to.

## Support from the named worker
Consider finding ways to help the young person become familiar with adults' services. This could be through the use of young adult support teams, joint or overlapping appointments, or visits to the adults' service with someone from children's services.
Support young people to visit adults' services they may potentially use, so they can see what they are like firsthand and can make informed choices.
If a young person is eligible for adults' social care services, the named worker:
must make sure the young person and their family or carers (if the young person wants them involved; see recommendations 1.2.20 to 1.2.21) are given information about different ways of managing their care and support, such as personal budgets
should give the young person the opportunity to test out different ways of managing their care, in order to build their confidence in taking ownership of this over time. This should be done using a stepped approach.
If a young person is not eligible for statutory adult care and support services, make sure that they, and their family or carers, are given information about alternative support.
If a young person does not meet the criteria for specialist adult health services, recognise that involving the GP in transition planning is absolutely critical.

# Support after transfer
If a young person has moved to adults' services and does not attend meetings, appointments or engage with services, adult health and social care, working within safeguarding protocols, should:
try to contact the young person and their family
follow up the young person
involve other relevant professionals, including the GP.
If, after assessment, the young person does not engage with health and social care services, the relevant provider should refer back to the named worker with clear guidance on rereferral (if applicable).
If a young person does not engage with adults' services and has been referred back to the named worker, the named worker should review the personcentred care and support plan with the young person to identify:
how to help them use the service, or
an alternative way to meet their support needs.
Ensure that the young person sees the same healthcare practitioner in adults' services for the first 2 attended appointments after transfer.
Ensure that the young person sees the same social worker throughout the assessment and planning process and until the first review of their care and support plan has been completed.

# Supporting infrastructure

## Ownership
Each health and social care organisation, in both children's and adults' services supporting young people in transition, should nominate:
senior executive to be accountable for developing and publishing transition strategies and policies
senior manager to be accountable for implementing transition strategies and policies.
The senior executive should be responsible for championing transitions at a strategic level.
The senior manager should be responsible for:
liaising with the senior executive
championing, implementing, monitoring and reviewing the effectiveness of transition strategies and policies.

## Planning and developing transition services
Consider making independent advocacy available to support young people after they transfer to adults' services. This is in addition to the statutory duty to provide advocacy under the Care Act 2014.
Consider establishing local, integrated youth forums for transition to provide feedback on existing service quality and to highlight any gaps. These forums should:
meet regularly
link with existing structures where these exist
involve people with a range of care and support needs, such as:
people with physical and mental health needs
people with learning disabilities
people who use social care services.
Ensure that data from education, health and care plans is used to inform service planning.
Carry out a gap analysis to identify and respond to the needs of young people who have been receiving support from children's services, including child and adolescent mental health services, but who are not able to get support from adult services. The gap analysis should inform local planning and commissioning of services.
When carrying out the gap analysis:
take into account resources already available in primary care practices
include young people who don't meet eligibility criteria for support from adults' services and those for whom services are not available for another reason
pay particular attention to young people:
with neurodevelopmental disorders
with cerebral palsy
with challenging behaviour, or
who are being supported with palliative care.
Jointly plan services for all young people making a transition from children's to adults' services. For young people with education, health and care plans, local authorities and health commissioners must jointly commission services, as per the Children and Families Act 2014.
Consider joining up services for young people who are involved with multiple medical specialties. This might include a single physician, such as a rehabilitation consultant, taking a coordinating role.

## Developmentally appropriate service provision
Service managers should ensure there are developmentally appropriate services for children, young people and adults to support transition, for example, agebanded clinics.

# Terms used in this guideline

## Developmentally appropriate
An approach to supporting young people that recognises them as a distinct group, subject to constantly changing circumstances. Developmentally appropriate care and support considers the young person as a whole, addressing their biological, psychological and social development in the broadest terms. This approach will need joinedup service provision, and for the young person to be informed about, and supported to play an active role in, their care and support (Farre et al.  Developmentally appropriate healthcare for young people: a scoping study).

## Gap analysis
An exercise carried out to understand the difference between the amount and type of services needed and the amount and type of services available. This could also be extended to understand the difference between the services people expect and those that are available.

## Named worker
The named worker is a role rather than a job title. This should be 1 of the people from among the group of workers providing care and support to the young person, who has been designated to take a coordinating role. It could be, for example, a nurse, youth worker, an allied health professional or another health and social care practitioner. It could also be someone who already has the title keyworker, transition worker or personal adviser.

## Personcentred
This means seeing the person using care and support as an individual and an equal partner who can make choices about their own care and support. The recommendations in this guideline seek to ensure that all of a young person's needs are supported, including those related to their wider context (for example, education and employment, community inclusion, health and wellbeing including emotional health, and independent living and housing options).

## Pooled budget
A type of partnership arrangement whereby NHS organisations and local authorities contribute an agreed level of resource into a single 'pot' that is then used to commission or deliver health and social care services.

## Strengthsbased
Strengthsbased practice involves the person who uses services and the practitioners who support them working together to achieve the person's intended outcomes, in a way that draws on the person's strengths. The quality of the relationship between those providing support and those being supported is particularly important, as are the skills and experience that the person using support brings to the process (Strengths-based approaches, Social Care Institute for Excellence).

## Transfer
The actual point at which the responsibility for providing care and support to a person moves from a children's to an adults' provider.

## Transition
The process of moving from children's to adults' services. It refers to the full process including initial planning, the actual transfer between services, and support throughout.
For other social care terms see the Think Local, Act Personal Care and Support Jargon Buster.
To find out what NICE has said on topics related to this guideline, see our webpage on service transition.# Context
This guideline covers both health and social care services. It aims to improve the planning and delivery of care, and young people's experience as they move from children's to adults' services. It focuses on all young people aged up to 25 who are going through a planned transition, including those who have mental health problems, are disabled or who are looked after.
Transition is defined as a purposeful and planned process of supporting young people to move from children's to adults' services (Transition: getting it right for young people Department of Health and Department for Education and Skills). But making this move can be difficult or provoke anxiety in young people and their carers.
There is a wealth of policy and guidance on agreed principles in respect of good transitional care, but there is also evidence that these principles are often not reflected in practice (for example, Beresford and Cavet  Transitions to adult services by disabled young people leaving out of authority residential schools and the NHS Diabetes report Diabetes transition  assessment of current best practice and development of a future work programme to improve transition processes for young people). Without proper support, young people may not engage with services (Watson 2005, Singh 2009), leading to a loss of continuity in care. This can be disruptive for young people, particularly during adolescence when they are at a higher risk of psychosocial problems (Patten and Viner  Pubertal transitions in health).
Although this guideline does not cover adolescent care more generally, it should be noted that transition from children's to adults' services takes place within the context of broader cultural and developmental changes that lead a young person into adulthood. As a result, young people may be experiencing several changes simultaneously (McDonagh and Viner  Lost in transition? Between paediatric and adult services).
This guideline has been developed in the context of a complex and rapidly evolving landscape of guidance and legislation, most notably the Children and Families Act 2014 and the Care Act 2014. While the Care Act and other legislation describe what organisations must do, this guideline is focused on 'what works' in terms of how to fulfil those duties. It is relevant to young people using health and social care services, their families and carers, care providers (including independent and voluntary sector providers), health and social care practitioners and commissioners (including people who purchase their own care). It is particularly aimed at professionals and managers in health and social care services, in both children's and adults' services.
The guideline will also be relevant to all people working with young people who are receiving health and social care services, in particular those working in education and employment agencies, youth justice and housing support.# Recommendations for research
The committee has made the following recommendations for research.

# Transition support for young adults
What approaches to providing transition support for those who move from child to adult services are effective and/or costeffective?

## Why this is important
Many transition policies exist and there are wellestablished local models for supporting and improving transition. These models are usually context and servicespecific and very few have been tested for their clinical and cost effectiveness. There is much evidence about the nature and magnitude of the problems of transition from children's to adults' services but very little on what works. Although there were gaps in effectiveness evidence across both children's and adults' services, the committee agreed that research could usefully focus in particular on transition interventions in adult services and on young adults receiving a combination of different services.

# The role of families in supporting young adults discharged from children's services
What is the most effective way of helping families to support young people who have been discharged from children's services (whether or not they meet criteria for adult services)?

## Why this is important
Families and carers often feel left out once the young person moves to adults' services, which can cause them considerable distress and uncertainty. The young person may themselves ask for their family not to be involved so families may also undergo a 'transition' in their involvement in the care of the young person. Alternatively, the young person may want their family involved after they move to adults' services.
We need to understand how best to support and help families and carers through the transition period. A very important subgroup in this regard is young people with longterm conditions who are leaving care, and who are therefore less likely to have consistent and longterm support from parents or carers. How can foster carers, social workers or personal advisers in leaving care services best support young people transitioning from children's to adult healthcare services?

# The role of primary care in supporting young people discharged from children's services
What are the most effective ways for primary care services to be involved in planning and implementing transition, and followingup young people after transfer (whether or not they meet criteria for adult services)?

## Why this is important
Some young people leaving children's services will not have access to the support or services previously available to them (for example, physiotherapy) even when their needs for these services remain unchanged. Other young people will not be considered eligible for adult services. Young people in care who are placed outside their local authority are likely to both change providers and GPs during transition. We did not identify any studies researching the role of primary care during transition for any of these groups.

# The consequences and costs of poor transition
What are the consequences and the costs of young people with ongoing needs not making a transition into adult services, or being poorly supported through the process?

## Why this is important
Many young people with ongoing needs fall through the transition gap or disengage with services at this point. Their outcomes remain unknown and are a serious cause for concern. We need longitudinal studies on the consequences of poor or no transition and the costs of unmet need as a result of poor transition.

# Support to carers and practitioners to help young people's independence
What is the most effective way to help carers and practitioners support young people's independence?

## Why this is important
An identified barrier to planned and purposeful transitions into adults' services is supporting adults holding young people back. Both parents and practitioners may prefer young people to stay on longer in children's services and not feel able to support their transfer on to adults' services.

# Supporting young people to manage their conditions
What is the relationship between transition and subsequent selfmanagement?

## Why this is important
Selfmanagement is part of being independent, and so is a part of developmental transition to adulthood. The most effective models of selfmanagement, and whether these are generic or diseasespecific, still need to be established. Some transition programmes include training in selfmanagement, others do not. Although growing independence is part of the transition into adulthood, personalised healthcare and helping people selfmanage tends to be variable. Further research is needed to understand how selfmanagement training can be built into transition planning and preparation for young people.

# Transition in special groups: young offenders institutions
What is the most effective way of supporting young offenders in transition from children's to adults' health and social care services?

## Why this is important
Young offenders tend to be vulnerable, with multiple problems. There are concerns that they tend to undergo particularly poor transitions into adult services. There is a lack of evidence for this group, despite documented high need and poor outcomes.

# Transition in special groups: lookedafter young people
What is the most effective way of supporting care leavers in transition from children's to adults' health services?

## Why this is important
The role of birth parents in the management of childhoodonset longterm physical and mental health conditions is essential at many levels and continues throughout transition. For young people in local authority care, even if they have had a stable placement or social worker during their time in children's services, transition is a period when their social care support is likely to change.
The status of the health service user changes at age 18, when the primary receiver of information is the young person, not their social worker or foster carer. There is a need for research on how health and social care services can better collaborate with the young person during transition, respecting their need for privacy but also enabling interagency communication when this is agreed by the young person.