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 off‑label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.
Involve young people and their carers in service design, delivery and evaluation related to transition by:
co‑producing transition policies and strategies with them
planning, co‑producing 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 long‑term 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 pre‑determined 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, information‑sharing 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 information‑sharing and confidentiality policies.
Check that the young person is registered with a GP.
Consider ensuring the young person has a named GP.
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 out‑of‑authority 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.
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:
oversee, 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 student‑focused transition planning is provided. This should involve peer advocacy, and friends and mentors as active participants.
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 1‑page profiles
ways to help the young person communicate, for example, communication boards and digital communication tools.
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 non‑statutory services, including condition‑specific 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 community‑sector 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 long‑term 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, self‑confidence and readiness to move to adults' services.
For detailed recommendations on supporting looked‑after children moving to independent living see the section on preparing for independence in NICE's guideline on looked-after children and young people.
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.
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 1‑page 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, computer‑based 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.
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 first‑hand 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.
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 re‑referral (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 person‑centred 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.
Each health and social care organisation, in both children's and adults' services supporting young people in transition, should nominate:
1 senior executive to be accountable for developing and publishing transition strategies and policies
1 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.
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.
Service managers should ensure there are developmentally appropriate services for children, young people and adults to support transition, for example, age‑banded clinics.
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 joined‑up 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. [2015] Developmentally appropriate healthcare for young people: a scoping study).
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.
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.
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).
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.
Strengths‑based 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).
The actual point at which the responsibility for providing care and support to a person moves from a children's to an adults' provider.
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.