Purpose

This guidance supports services to provide developmentally appropriate care for 0 to 25-year-olds. It sets out proposed actions for integrated care boards (ICBs), providers and clinical teams to enable safe and effective transition between services. If adopted by systems, this approach will improve continuity of care, health outcomes and young people’s experience.

The guidance also contains specific operational guidelines for supporting those aged 14 to 17 who are receiving a children and young people’s continuing care (CYPCC) assessment and package of care.

This publication does not seek to set out specific actions for transitioning between neonatal and paediatric services. However, some of the content is still relevant and can be applied to this age group.

What is healthcare transition?​

The National Institute for Health and Care Excellence (NICE) defines transition as “the purposeful and planned process of supporting young people to move from children into adults’ services”. This transition should involve:

• preparing the young person for moving to adult services
• the formal transfer of their care to a lead adult health professional
• the subsequent support to establish them in the adult service

Research has shown that unsupported transition can not only lead to poorer health and social outcomes, but can also negatively impact disease control, social participation and educational achievement.

What needs to change

There are 12 million people aged 10 to 25 in England – 18% of the population. This is one of the most formative phases of life, shaping long-term health and wellbeing. Yet too often, young people are let down by or fall through the cracks of a healthcare system designed around children or adults, but rarely for those in between. As one young person, Hannah, says:

“At the age of 16 I had just been diagnosed with a life-limiting illness. I needed an operation, but the children’s hospital had a policy not to operate on over 16s, and the adult hospital had a policy not to operate on under 18s … I lost 6 weeks of my life to red tape, to funding policy, to boardrooms”.

This guidance responds to what young people, families and NHS staff have told us: there is a lack of clarity and accountability for healthcare transition. It sets out recommendations and examples of good practice. In doing so, it supports the ambitions of the 10 Year Health Plan, as well as the Strategic commissioning framework, which asks ICBs to take a holistic view of population health.

Role of services

Actions for integrated care boards (ICBs)

Integrated care boards are responsible for supporting and commissioning services to jointly develop healthcare transition models. These include paediatric, adolescent and adult services, all of which are equally accountable for delivery.

These models should enable the provision of developmentally appropriate care, as well as ensuring there are no gaps or reductions in quality across ages.

Service models may include:

• an established transition pathway with responsibilities outlined until 25
• a fully integrated 0 to 25-year model
• a separate adolescent service

Examples of these approaches are provided in appendix 2. Service design and implementation should be tailored to local factors, including demographics, geography and capital considerations.

Service model requirements

While local variation is necessary and expected, ICBs are responsible for ensuring that each service model has an agreed, robust terms of reference. It should outline the roles and responsibilities of all partners, including who is responsible for treating those aged 16 to 17 years. ICBs should also identify and address any other existing or future service gaps.

As outlined in the Strategic commissioning framework, ICBs will consider the role of neighbourhood, as well as the role of place and providers when commissioning service models. For healthcare transition, this should include:

• primary and secondary care
• physical and mental health
• community services
• neighbourhood multidisciplinary teams
• education providers (including early years, further education and higher education)
• social care
• special educational needs and disability (SEND)
• learning disability and autism services
• social prescribing services
• hospices
• employment
• housing
• all-age continuing care (CYPCC and NHS CHC)
• voluntary, community and social enterprise (VCSE) sector
• peer support

Multi-agency partnerships should include representatives who can understand and advocate for the young person’s various needs, including delegates from local authorities, who should provide further support for any social care and educational needs.

The role of local authorities in transition is outlined in more detail within The Care Act. The Social Care Institute for Excellence (SCIE) has also developed a range of activities to achieve integrated care for young people during this period.

Training

Staff across paediatric, adolescent and adult services should have the skills, competencies and knowledge to work with, engage and empower young people. ICBs will provide training on adolescent healthcare and transition, ensuring it is accessible and completed.

Standard 6 of the Office for Health Improvement and Disparities’ ‘You’re Welcome’ guidance outlines the training required to deliver a youth-friendly service. It highlights the Adolescent Health Programme, an eLearning offer for all healthcare professionals working with young people aged 12 to 18. The developmentally appropriate healthcare toolkit is another useful resource.

Further resources are listed in appendix 4.

Actions for providers

Service model requirements

Providers will ensure service models meet the requirements outlined by the NICE quality standards. All models should be youth-friendly and personalised. Design and implementation should be benchmarked against the You’re Welcome guidance. Recommendations on how clinical teams can meet these requirements are provided in the next section.

Providers are also responsible for ensuring no child or young person experiences a gap in care. This includes proactively identifying young people due to transition.

Early identification of needs and opportunities is essential for the best long-term health outcomes. This approach requires cross-agency working.

Providers will have written policies that explain which service(s) hold clinical responsibility for treating those aged 16 to 17. This should include those who have not been under the care of paediatric teams before. At the time of writing, professional regulators do not state limitations on the age of patients that professionals care for, focusing instead on scope of practice. Healthcare workers should work together to develop pathways that are safe and effective.

Providers will ensure that a young person is not left without a service due to referral age cut-offs. Local standard operating procedures (SOPs) should support collaborative working across services. SOPs should reference the location and clinical team responsible for treating 16- to 17-year-olds, including for those referred to specialist services. An example of how a SOP has been developed at University Hospitals Birmingham NHS Foundation Trust can be found in appendix 1.

The Facing the Future standards highlight the current challenges in ensuring continuity of care for children and young people transitioning from children and adolescent mental health services (CAMHS) to adult mental health services. Providers should follow the recommended standards when providing care to adolescent patients who present to an emergency department during this time.

Providers will collect data to inform robust service evaluations. This may include clinical coding through the use of:

• SNOMED codes
• was not brought (WNBs)
• did not attend (DNAs)
• emergency admissions

Qualitative data should also be collated, for example, through patient surveys. An example of how analysing data led to service redesign and improved engagement for young people is included in appendix 1.

Guidance for clinical teams

Good transition ensures children and young people feel prepared, supported and confident as they move into adult care. Care should be based on needs and complexity, not just the young person’s diagnosis or what is routinely provided.

Care should be flexible, youth-friendly and non-stigmatising, offering choices and providing suitable materials to help young people take responsibility for decisions affecting them and their care.

Any speciality-focused policies developed to support a population group of young people into adolescent and/or adult services should build on the recommendations provided and tailor them to meet different needs. Please read the operational requirements for young people receiving a CYPCC assessment and package of care as an example.

Step 1: Creating a healthcare transition plan

Start early

• Where appropriate, start preparing most young people for their healthcare transition from age 11 to 12, and no later than 14.
• For those who enter the children’s service aged 14 or older, start planning immediately.
• Tailor preparation to each young person’s abilities, needs and goals. The NHS Youth Forum recommend that early preparation should look different for different young people. For example, some may prefer a shift to adolescent-focused healthcare, while others may want to discuss what moving to adult services involves.

Co-develop a plan

• Plans should have a positive, strengths-based focus. They should be linked to other care plans, and information should be shared with all those involved in delivering care.
• An annual review of the plan should be held. This should be assessed alongside other annual reviews, such as those for asthma, diabetes or SEND.
• The point of transfer should not be rigid. Instead, it should take place at a relatively stable point in the young person’s life. Good transition is supported by providing personalised care, not a one-size-fits-all approach. Shared decision-making should occur throughout the care pathway.
• It’s important to consider the increased complexity of healthcare transition for young people who have safeguarding involvement – where it can be particularly harmful for services to be abruptly withdrawn based on arbitrary markers such as birthdays.

Step 2: Delivering good care for young people and their families

Provide a named worker

• Nominate a named worker(s) to co-ordinate care before, during and after transfer. This could be separate representatives from paediatric, adolescent and adult services or a single worker responsible across areas.
• If the young person requires multiple service transitions, the named worker should co-ordinate these with the support of an administrator.
• The named worker in the adult service should stay with the young person until they are settled in the service.
• Remember: a named worker is a role, not a job title.

Research shows that employing youth workers as the bridge between young people, their parents and multidisciplinary teams in hospitals can be effective. Appendix 1 includes a case study on how Leeds Teaching Hospitals NHS Trust have embedded them within speciality services to support healthcare transition.

Provide developmentally appropriate care

• Check understanding at all stages and make reasonable adjustments as required. The young person should be asked regularly how they would like their parents and carers to be involved throughout the process. Complex learning, language and communication needs should be accounted for.
• Employment advice and guidance are integral. The impact of the young person’s condition and associated health and wellbeing needs should be considered alongside their ambitions and hopes.
• Healthcare transition planning should include parents, carers or significant others, as well as the young person’s GP. Although parental responsibility ends legally when a young person reaches adulthood, family and carers’ knowledge and expertise can be invaluable in transition planning. This may particularly be the case for young people receiving a CYPCC assessment and package of care, especially if they cannot fully articulate their needs.
• Professionals should consider the young person’s capacity and communication skills and consult the Mental Capacity Act if required.
• Where young people lack the capacity to make decisions, family members and carers can apply to the Court of Protection to become a Deputy or Lasting Power of Attorney.
• Safeguarding and legal implications should be considered. Review appendix 3 for more information.

The checklist below provides further information on structuring appointments during healthcare transition, ensuring young people are fully supported and empowered throughout the transfer of care.

Supporting individuals receiving a children and young people’s continuing care assessment and package of care

Children and young people’s continuing care (CYPCC) packages of care provide ongoing NHS-funded care for young people with the most complex, intense or unpredictable needs arising from disability, accident or illness. They are designed for those whose care and support requirements cannot be met by existing universal or specialist services alone. Visit the National framework for children and young people’s continuing care.

Transition planning for this group of individuals with complex health needs should be underpinned by the best practice outlined throughout this operational guidance.

What are people with a CYPCC package entitled to?

Every young person receiving a CYPCC assessment and package of care should have a structured transition plan as they approach adulthood.

Role of services

Actions for integrated care board (ICBs)

In addition to the general ICB responsibilities for transition, ICBs have specific responsibilities in relation to young people receiving a CYPCC assessment and package of care.

ICBs should:

• play an active role in the development and oversight of local CYPCC transition planning processes, jointly developed by adult and children and young people’s services
• ensure NHS continuing healthcare (NHS CHC) is appropriately represented at all CYPCC healthcare transition planning meetings (consider paragraph 363 of the National framework for NHS continuing healthcare and NHS-funded nursing care)
• ensure healthcare staff have access to training that includes the transition from CYPCC to adult services
• determine commissioner responsibility in line with: Who pays? Determining which NHS commissioner is responsible for commissioning healthcare services and making payments to providers
• maintain a directory of commissioned adult universal and specialist services in their system, including referral routes to support appropriate referrals for individuals not eligible for NHS CHC
• consider the Standardising community health services – core component descriptions, aiming to ensure there are sufficient commissioned services for transitioning young people with complex clinical needs

Actions for providers and organisations

The named keyworker for the young person should be a clinical professional who knows the individual well. This might be the CYPCC nurse or another relevant professional.

Young people and their families should be made aware that although they may potentially be found eligible for NHS CHC, with NHS funding continuing, the professionals involved in their care will probably change. For example, long-standing children’s health teams will most likely be replaced by separate adult specialists.

Where a young person relies on delegated healthcare (for example, PEG feeding), it is important to document existing methods in detail. In some cases, adult services may not use the same techniques, so plans must be in place to adapt support safely and respectfully.

Personal health budget (PHB) support

In discussions around personal health budgets, consideration should also be given to any existing personal budgets, family trusts or legal arrangements that may be affected by the transition (for example, Deputyship or Lasting Power of Attorney).

Families should be signposted to advice and support on:

• Court of Protection
• financial planning for young people lacking capacity

3 key engagement points for people with a CYPCC package of care

Having a minimum of 3 points of engagement before the young person turns 18 during the transition to adult services supports:

• National framework for children and young people’s continuing care
• National framework for NHS continuing healthcare and NHS-funded nursing care (July 2022; revised)

Engagement timescales must be sensitive to individual circumstances, including life expectancy.

Engagement point 1: age 14

It is good practice to start engagement from age 11 to 12, and no later than 14. Where an education, health and care plan (EHCP) is in place, engagement at 14 is mandatory.

Many people with a CYPCC assessment and package of care will remain dependent upon others for some or all of their care needs throughout their lives. There is also a responsibility to support and empower families during the transition journey.

Where young people are able to develop greater independence, the aim of CYPCC should be to support that and enable them to manage their condition(s) themselves with a full understanding of its implications. For others, full independence in adulthood may not be achievable, and families need to be supported to understand the available options.

Early conversations with the young person and, where appropriate, their advocates are essential to understand aspirations. This may include academic progression or developing valuable life skills. It is crucial that this process is supported by SEND and social care partners.

A CYPCC healthcare transition plan should be created at this stage and updated as part of the annual package review. This should be aligned, where appropriate, with:

• the Decision support tool (DST)
• the young person’s EHCP to ensure a holistic, multidisciplinary team approach

A named CYPCC keyworker should be nominated for each young person and remain with them until they are engaged and settled in the adult service, where applicable. This includes preparing them early for legal changes such as those arising from the Mental Capacity Act 2005, well before the young person turns 16. This keyworker will liaise with key staff within relevant services where transition will also be taking place.

This stage should be used to manage expectations. CYPCC eligibility does not guarantee eligibility for NHS CHC at age 18.

Engagement point 2: age 16

An initial NHS CHC screening should be conducted at age 16, using the NHS CHC checklist and ensuring they have the appropriate consent to share information with third parties such as family, friends and advocates.

If the NHS CHC checklist indicates that the young person may be eligible for NHS CHC funding (positive checklist), they and their family should be informed that:

• social care funding may stop when NHS CHC funding begins at 18 years
• both health and care needs will be funded by the NHS for as long as they remain eligible for NHS CHC

Where a young person is supported under an EHCP in an education setting, the discussion should cover the young person’s and their family’s preferences about how support will be continued until they are 25 years old. This is particularly important if they require health interventions while in an educational setting.

For children and young people under the care of social services and placed in residential settings, it is essential to understand their preferred place of residence in advance to support any potential move before they are 18. Some residential placements and providers are not CQC or Ofsted registered to care for adults.

Engagement point 3: age 17

As soon as is practical after the young person’s 17th birthday, eligibility for NHS CHC should be determined in principle by the relevant professionals within the ICB.

To ensure a smooth transition to adult services, staff from NHS CHC should be involved in the formal assessment (the multidisciplinary team’s completion of the Decision support tool) and in care planning. If needs are likely to change, a provisional decision could be made and reviewed as adulthood approaches.

If the young person is eligible for NHS CHC funding, any package of care identified through the assessment process should come into effect on the young person’s 18th birthday, subject to any change in needs. If there is a significant difference of opinion between the responsible ICB and the young person, their advocate, or their family, about what is in the young person’s best interests, a resolution must be reached before their 18th birthday (review paragraphs 212-236 of the National framework for NHS continuing healthcare and NHS-funded nursing care).

If a young person is eligible for NHS CHC when they reach 18, but lacks the mental capacity to decide their future accommodation and support arrangements, a best-interests decision may need to be made about these issues. This process must be in accordance with the Mental Capacity Act 2005, consulting relevant people.

In addition to a CYPCC plan, a young person with an EHCP for SEND is entitled to retain this until they are 25.

The EHCP review, the NHS continuing health care assessment, and the CYPCC annual assessment should be co-ordinated to:

• minimise duplication
• share evidence
• align dates
• agree a single multi-agency meeting wherever practical

That package may change if the young person’s needs or circumstances change, but it should not change simply because of the move from children’s to adult services or because of a change in the organisation with commissioning or funding responsibilities.

Where change is necessary, it should be planned in a way that:

• is done in full consultation with the young person
• ensures all options are fully understood
• takes a personalised approach
• includes the named keyworker informing the young person and their family of their right to have a personal health budget (see paragraphs 320-324 of the National framework for NHS continuing healthcare and NHS-funded nursing care, July 2022 -revised)

No services or funding should be unilaterally withdrawn unless a full joint health and social care assessment has been conducted and alternative funding or service arrangements explored – with full consultation with the young person and their advocates or family.

The legal responsibilities for child and adult services overlap in certain circumstances. In developing individual CYPCC healthcare transition plans, partners should be clear where such overlaps occur. Plans should clearly set out who will take responsibility and why.

A gap in service provision due to age does not transfer early responsibility to NHS CHC, which, by definition, is available only to those aged 18 and over.

If the multi-professional panel of health and care staff decide that the young person is not eligible for a NHS CHC package, the young person and their family should be informed that they have a right to request a review of the decision through the ICB’s local resolution policy.

The care package should not be removed during this review process, and the existing arrangement should continue. This may be beyond their 18th birthday. The ICB should consider whether to commission, fund or provide services as part of a joint package of care funded by both the NHS and the local authority (review Practice guidance PG 51 of the National framework for NHS continuing healthcare and NHS-funded nursing care).

The named keyworker should support social care during the transition and make referrals to universal or specialist services for continued support.

The CYPCC healthcare transition plan will, at this point, place greater emphasis on the specific structure and content of the adult package of care than it did earlier in the process.

Transfer of care: age 18

For young people eligible for NHS CHC, the formal transfer of responsibilities and care takes place on their 18th birthday. The NHS CHC team should be fully prepared to introduce the new care package – or continue the existing one – and there should be a handover meeting including:

• the young person
• their family
• the children and young people’s continuing care (CYPCC) team

This will check that there are no outstanding actions in the children and young people’s continuing care plan.

The care package should be reviewed after 3 months to ensure it continues to meet the individual’s needs.

Appendix 1: case studies

Appendix 2: examples of local implementation

Areas across England have developed different transition models based on local objectives and needs. Below is an overview of 3 model types.

A fully integrated 0 to 25-year model

Services merge to provide care for young people aged up to 25 and remove age-based care gaps.

Examples

Forward Thinking, Birmingham

• Community and inpatient mental health partnership, offering assessment and treatment for young people aged 0 to 25 years old.
• Offers flexible, tailored support, including drop-in sessions, bereavement support services, medical management resources and support during key periods, such as starting school, university or a festive season.
• Find recent updates about their work on the Forward Thinking website.

Growing Healthy, County Durham

• Reconfigured family health services to include young people up to the age of 25.
• Work closely with nurseries, schools and colleges. The multidisciplinary team aim to support key periods in children and young people’s lives, such as starting school and moving into further education.

Models configured by level of need

Support determined by complexity (low, moderate or high), not rigid age or diagnosis.

Example

The THRIVE framework 

• The national i-THRIVE Programme has collaborated with over 70 areas to support the implementation of the THRIVE framework for system change. The programme has also created a range of resources.
• By bringing together all relevant stakeholders within communities, the programme focuses on identifying and agreeing shared priorities for the mental health of children and young people.

Young adult health services (for example 14 to 25 or 16 to 25)

Services specifically designed for young people in certain age brackets.

Examples

Minding the Gap, Camden

• Multi-agency collaboration between North London Foundation NHS Trust (AMHS) The Tavistock and Portman NHS Trust (CAMHS) and Catch22 (a third sector organisation) providing joined-up services for 16- to 25-year-olds.
• Fortnightly multi-agency forums to co-ordinate care for young people at risk of falling through the gaps. The panels are attended by up to 20 different agencies from health, local authority and the third sector to co-produce creative and holistic transition plans.
• Includes youth-friendly services, such as a health and wellbeing drop-in centre, as well as psychotherapy and counselling.

i-Rock Youth Mental Health Service, Sussex Partnership NHS Foundation Trust

• A ‘one-stop-shop’ service offering timely support for mental health issues, wellbeing, education, employment and housing for young people aged 14 to 25.

The Well Centre, Lambeth and Wandsworth

• Co-produced with young people, the Well Centre integrates physical, mental and sexual health support with youth work and health and wellbeing practitioners.
• The service is designed around the realities of adolescence – evening clinics that do not conflict with school or exams, clear guidance on confidentiality and consent, and active support during transitions to adult services.
• Referrals from CAMHS are routinely made to the centre at age 17 to 18, and new projects are piloting how the service can support attention deficit hyperactivity disorder (ADHD) prescribing and chronic condition pathways into adulthood.
• 82% of young people report improved wellbeing, and more than 90% would recommend the service to friends. Commissioners describe it as a unique “2.5 tier” service, bridging the gap between universal care and specialist CAMHS.

Appendix 3: safeguarding and legal implications

Safeguarding

All staff working with young people should receive training in confidentiality, safeguarding, communication and young people’s rights, particularly regarding consent and privacy. In relation to healthcare transition, safeguarding must go beyond traditional child protection. Contextual safeguarding considers the harm young people may face from relationships outside their families, including in communities, schools and online.

Child and adult safeguarding reviews highlight that poor transition planning can leave young people vulnerable as they enter adulthood. A trauma-informed, strengths-based approach is essential when developing transition plans.

The resources below are helpful for further guidance and support:

• GOV.UK – Working together to safeguard children
• Royal College of Nursing – Safeguarding children and young people: roles and competencies for healthcare staff
• NICE – Looked-after children and young people

Legal implications

Providers must consider the legal implications of the models of care they adopt. People aged 16 or over can consent to their own treatment. This can only be overruled in exceptional circumstances. Younger children can access health services and expect the same level of confidentiality as adults, except in specific circumstances, which should always be discussed with a young person by the clinical team.

Young people (aged 16 or 17) are presumed to have sufficient capacity to decide on their own medical treatment unless there’s significant evidence to suggest otherwise. More information can be found on the nhs.uk or CQC websites, including information on the Mental Capacity Act and Gillick competence.

Appendix 4: Useful tools and resources

Existing support

This guidance builds on the work developed and delivered by researchers and healthcare transition experts across the country. The resources below can also be used to provide further support for integrated care systems (ICBs) and providers.

Guidelines and quality standards on health and social care transition

• NICE guideline [NG43] and quality standard [QS140]. The Care Quality Commission (CQC) uses NICE guidelines as evidence to inform the inspection process.

Guidelines on all-age continuing care (AACC)

• GOV.UK – National framework for children and young people’s continuing care (January 2016)
• GOV.UK – National framework for NHS continuing healthcare and NHS-funded nursing care (July 2022; revised)

Guidance on commissioning and funding

• NHS England – Who pays? Determining which NHS commissioner is responsible for commissioning healthcare services and making payments to providers
• NHS England – Personal health budgets

Resources to guide young people, families and carers through healthcare transition

• Imperial College Healthcare Trust – 11to25hub
• Healthier Together
• Ready, Steady, Go
• The Challenging Behaviour Foundation – Family carer advocacy resource

Standards and associated quality criteria for establishing youth-friendly services

• Office for Health Improvement and Disparities (OHID) – You’re Welcome criteria

Resources to support healthcare transition best practice

• The National Development Team for Inclusion (NDTi) – Preparing for Adulthood
• The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) – The Inbetweeners report
• Royal College of Paediatrics and Child Health (RCPCH) – 5 key determinants of effective transition
• Royal College of Paediatrics and Child Health (RCPCH) – Facing the Future – standards for children and young people in emergency care settings
• Alder Hey Children’s NHS Foundation Trust – 10 steps: Transition to adult services
• The Burdett Trust for Nursing – a series of films that share how nurses are helping children transition from child to adult health care services
• Barnardo’s – NHS young researchers: healthcare transition report 2024-25

Guidance on developing personalised physical and mental health care

• NHS England – Universal personalised care: implementing the comprehensive model

Resources supporting children and young people with SEND

• GOV.UK – Special educational needs and disability code of practice: 0 to 25 years
• NHS England – Annual health checks

Legislation

• Children Act 1989
• Children and Families Act 2014
• Care Act 2014
• Mental Capacity Act 2005

Publication reference: PRN01653