Health transition resources

This advice has been captured within Facing the Future: Standards for ongoing health needs.

1. Develop a person-centred transition plan that is developmentally appropriate and is regularly reviewed

In her blog post, Dr Jacqueline Cornish, National Clinical Director for Children, Young People and Transition to Adulthood at NHS England, outlines the importance of providing developmentally appropriate transition plans for young people; she writes:

Putting young people at the centre of well planned, integrated and supported transition enables them, and where appropriate those who care for them, to stay in touch with the teams that look after them. Consequently young people are more likely to carry on with their treatment, and continue to develop self-management of thefbir condition.

This Developmentally Appropriate Healthcare Toolkit gives practical suggestions about how healthcare can be tailored to young people's needs as they develop and change through adolescence into young adulthood (ie during the transition process). The toolkit is designed to support everyone working in the NHS, from clinicians to chief executives, to promote the health of young people and to play their part in making healthcare work for this age group.

The following are self management tools:

• Ask 3 Questions (PDF) - designed for patients to empower and encourage their involvement in healthcare decisions
• My Health Passport - an online tool for young people to access their medical information, which can then be taken to healthcare visits to help with discussions and identify where there are gaps in the young person's knowledge
• Explain Me - with a 'Your Issues' form, a useful prompt to encourage young people to ask questions and issues

2. Follow good practice and existing guidelines

We encourage health professionals to use existing guidance to develop transition care plans that meet the needs of young people with their consent and ensure confidentiality and are regularly reviewed as they grow up.

Our Facing the Future: Standards for ongoing health needs (2018) states: "Service planners to ensure that there is a designated person within the child health service who is responsible for ensuring that developmentally appropriate transitional care is provided and coordinated by both child and adult services."

The NICE guideline (NG43), Transition from children’s to adults’ services for young people using health or social care services provides overarching principles for health and social care providers and practitioners. It outlines how transition planning and support should be provided for young people before, during and after their transition. The transition process is explained in BMJ’s summary of NICE guidance, which provides practical advice for clinicians to improve young people’s engagement with services.

The Care Act: Transition from childhood to adulthood (SCIE) states: "If a child, young carer or an adult caring for a child is likely to have needs when they, or the child they care for, turns 18, the local authority must assess them if it considers there is ‘significant benefit’ to the individual in doing so. This is regardless of whether the child or individual currently receives any services."

The Social Care Institute for Excellence (SCIE) resources help local authority staff, social workers, young people and carers plan for transition between child and adult care services.

In 2014, the Care Quality Commission published From the pond into the sea (PDF), which outlines how transition planning is incorporated within CQC inspection frameworks and ratings. The report finds that only 50% of 180 young people and parents questioned had received support from a lead professional during the transition process.

We have collated examples of best practice in delivering transition healthcare services.

3. Involve young people and their families in decisions about their care

Guidance indicates that young people and their families should be involved in the development of their transition care plans. Young people and their families must be provided with appropriate resources and support to guide them through the transition process.

These top tips (PDF) are for professionals who support young people to participate in their EHC (Education Health and Care) plan.

Young people can be signposted to online resources and services, such as Youth Access.

Findings from a longitudinal study of transitioning young people in Northumbria found that these three features of transition care were significantly associated with better outcomes for young people:

• Appropriate parental involvement in the process, suiting the parent and young person
• Promoting the young person's confidence to manage their health
• Meeting the adult teem before transfer of care.

Find out more about what young people think about transition in these experiences collected by RCPCH&Us.

4. Share information effectively between child and adult services

To ensure that there is an effective transition process, there should be regular communication between children’s and adults’ services, and information should be shared via agreed protocols. The young person’s General Practitioner should be involved throughout the process, particularly in situations where there is no equivalent adult service. Ideally, there should be a nominated lead to coordinate the development and implementation of the transition care plan in both child and adult services.

Where appropriate, information should be shared with external agencies that the young person engages with. Good transition plans take a holistic look at the needs of the young person, including aspects of education and employment.

The Royal College of Nursing has developed practical guidance for nursing staff on adolescent transition care, which uses a national clinical pathway framework.

The Royal College of Physicians has developed resources and guidance for the care of 16-24 year olds in their Acute Care Toolkit 13. Their report Why young adults need better healthcare, highlights the need for young adults and adolescents to be recognised and suggestions improvements for the clinical care provided to this group.

5. Commissioners and service planners play an important role

Commissioners and/or service planners should provide resource to support transition planning and monitor the effectiveness of transition services to drive improvements.

Findings from a longitudinal study of transitioning young people in Northumbria found that there is an important role for both commissioners of child and adult services.

The following guidance for commissioners has been developed:

• NIHR Transition Research Programme - implications of transition research for commissioners, senior managers and Department of Health
• You're welcome - Quality criteria for young people friendly health services - for making health services young people friendly, produced by Department of Health in 2011
• Healthcare Quality Improvement Partnership - guide to addressing child to adult transition in national clinical audit
• Joint Commissioning Panel for Mental Health - guidance for commissioners of mental health services
• NHS England - NHS Standard Contract (2014/15) (PDF) - model transfer and discharge from care protocol for young people with mental health problems in transition from CAMHS
• NHS England - commissioning for transition to adult services for young people with SEND
• NHS England (PDF) - Diabetes Transition Service Specification
• NHS England (PDF) - Congenital Heart Disease Standards & Specifications
• Scottish Transitions Forum - principles and examples of good transition

Webinar - ensuring high quality care

Jointly hosted by RCPCH, Young People's Health Special Interest Group and Royal College of Physicians members, advises health professionals providing developmentally appropriate care for young people transitioning to adult services.

All RCPCH webinars are available on RCPCH Learning, our learning management system.

Condition-specific resources

Asthma

Asthma UK - information and resources for young people including a 'checklist' of questions for health professionals

Autism

National Autistic Society - information and 'transition tips' for young people

Cystic fibrosis

Cystic Fibrosis Trust - resources and information for young people

Diabetes

Diabetes UK - a guide for young people moving into adult care (PDF)

Disability

Contact (England) - information on moving into adult services in England

Contact (Scotland) - information on moving into adult services in Scotland

Together for Short Lives - for children, young people and carers with life-limiting and life-threatening conditions: resources on transition to adult services, plus best practice examples

Down syndrome

Down's Syndrome Association:

• Education rights factsheets - a series for young people, including SEND (special education needs and disability), school transport, transfer reviews, education health and care plans
• Listen to Me - a leaflet to help young people make decisions about their future
• My Health Book - for young people to take to health appointments

Work Fit - employment programme brings together employers and jobseekers who have Down's Syndrome

Epilepsy

NICE Quality Standard [QS27] - on epilepsy in children and young people

Young Epilepsy - information for young people on what to include in their Individual Healthcare Plan and resources to support them at school

Gastrointestinal disease

British Society of Gastroenterology - guide for young people with Inflammatory Bowel Disease moving to adult care

Crohn's & Colitis UK - information for young people, including the 'Moving to adult care' booklet

Hearing impairment

The National Deaf Children's Society - including:

• Transition to Adult Hearing Services - briefing providing an introduction to some of the issues and challenges that deaf young people face in moving to adult hearing services
• Commissioning guidance - audiology transitions
• My Life My Health - resources for young people, parents and professionals aimed at improving deaf young people's experiences of health services

Heart disease

British Heart Foundation - Teen Heart - support group for young people aged 13-18 with a heart condition

HIV

Children's HIV Association - guidelines on transition for adolescents and advice from young people

Mental health

Royal College of Psychiatrists - Moving on from CAMHS - practical advice for parents, teachers and young people entering into mental health services

Young Minds - young people's guide to transition

NICE - a guide for mental health practitioners supporting young people through transition

Renal

International Society of Nephrology (ISN) - a consensus statement by the ISN and the International Peidatric Nephrology Association (IPNA) on transition from paediatric to adult renal services

Rheumatology

Juvenile Idiopathic Arthritis - advice for parents and young people on the transition from paediatric to adult rheumatology care

Versus Arthritis - information for young people on living with arthritis, including advice on accessing healthcare, school / university, emotions and relationships

SEND (special educational needs and disability)

Preparing for Adulthood - resources for young people with SEND approaching transition

Scottish Borders Council - information on services and principles for young people with learning disabilities

Scottish Government - The keys to life (PDF) - improving quality of life for people with learning disabilities

Disclaimer

RCPCH have been notified that the above are examples of good health transition resources and these will be reviewed on a regular basis. Sharing these examples does not equate to formal RCPCH endorsement.

Please get in touch if there are other resources for sharing: health.policy@rcpch.ac.uk