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Transitioning into adult services
This page will help ICBs to take a number of specific actions in commissioning smooth age and developmentally appropriate transitions from children and young people’s to adult palliative and end of life care services.
The three phases of transition
Many more young people aged 14-25 with life-limiting or life-threatening conditions are living longer with increasingly complex health conditions. There are three phases of transition:
- Phase 1: Preparing for adulthood
- Phase 2: Preparing to move on
- Phase 3: Settling into adult services
How the needs of young people with life-limiting or life-threatening conditions differ from those of children and older adults
Many young people with life-limiting conditions and their families find transition daunting. On leaving the comprehensive care offered by children’s services, they will often have to deal with and establish important relationships with a range of unfamiliar agencies and professionals. The result can be gaps in services or fewer or less appropriate services.
Their emotional and psychological maturity, as well as some key skills, will still be developing. Young adults with life-limiting conditions diagnosed in childhood may well be less mature than their healthy peers.
Many view their parents as their main source of support. Unlike other adults, the majority of young people are not at the stage at which parental support has been replaced with another source of committed support, such as a long-term partner.
Young adults want choice and control over how their parents are involved in decisions about their care. They often find their first appointments with adult health services daunting. They do not want health professionals to assume that their parents should not be involved.
Like all young people, many of those with life-limiting conditions want to establish their independence. They may:
- want to be able to spend time away from older adults
- hope to go into further or higher education and attain qualifications and skills
- wish to get a job
- move into their own home
- want to develop a social life and have relationships
- want to use their experiences to make things easier for other people in similar situations
For many young people with life-limiting conditions, transition into adult services often coincides with a rapid decline of their condition and eventual death. As such, they have specific health needs which differ from both younger children and older adults who need palliative care.
These include advance care planning (ACP) and end of life planning. Young people can benefit from plans in place where it is unclear whether their condition will stabilise, deteriorate or enter the end of life phase; this is known as parallel planning.
Action that ICBs can take
The NHS Long Term Plan states that selectively moving to a ‘0-25 years’ service will improve children’s experience of care, outcomes and continuity of care.
ICBs may wish to make sure that the five standards and associated goals are met for young people with life-limiting or life-threatening conditions. These are set out in the Together for Short Lives’ resource Stepping Up: A guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions.
Standard 1: Every young person from at least age 14 should be supported to be at the centre of preparing for approaching adulthood and for the move to adult services. Their families should be supported to prepare for their changing role.
(NICE QS 1)
Standard 2: Every young person should be supported to plan proactively for their future. They should be involved in ongoing assessments and developing a comprehensive holistic plan that reflects their wishes for the future.
(NICE QS 3 & 4)
Standard 3: Every young person should have an end of life plan which is developed in parallel to planning for ongoing care and support in adult services. This standard should apply to all stages of the transition journey.
Standard 4: Children’s and adult services should actively work together to enable a smooth transition.
(NICE QS 2)
Standard 5: Every young person should be supported in adult services by a multi-agency team fully engaged in facilitating care and support. The young person and their family should be equipped with realistic expectations and knowledge to ensure confidence in their care and support needs being met in the future.
(NICE QS 5)
Stepping Up aims to provide a generic framework that can be adapted locally to plan multi-agency services for young people with life-limiting or life-threatening health conditions as they become adults and move into adult services.
Multi-agency working involves services in the statutory sector, voluntary sector agencies and independent providers, as well as those employed directly by the young person and their family through direct payments.
Stepping Up provides a guide to the three phases of transition set out above. It also describes the roles of different agencies in adult services.
Seamless commissioning by children’s and adult teams
ICBs may wish to ensure that individuals responsible for commissioning palliative and end of life care for children and for adults work together to specify that local children’s and adult providers offer:
- services suitable for young people – possibly as a distinct discipline separate to children’s and adult services
- services focussed on bringing about smooth transitions for young people
- systems to collect data on the number of young people in transition and on the care which is provided to them; this can be used to stimulate improvements in services
- ways of measuring and acting on young people’s experiences of services as necessary
- access to training to help young people self-advocate and adapt to consenting their own treatment
- access to training for staff working with young people; this can help professionals provide services appropriate to young people which can help them achieve the outcomes they want from their lives
- an organisational transition policy, pathway and operational guide, which has been jointly developed by those providing care to children, young people and adults, as well as young people themselves
- each young person a nominated healthcare transition co-ordinator or key worker who is known to them
- access to multi-media transition support resources
- access to peer support
Integrated neighbourhood team (INT) working is fundamental to NHS England’s vision for integrating primary care and may provide an opportunity to bring about smoother, more joined-up transitions to adult palliative care. INTs are intended to evolve from primary care networks (PCNs), in which GP practices work together with community, mental health, social care, pharmacy, hospital and voluntary services in their local areas in groups of practices.
The National Institute for Health and Care Excellent (NICE) provides guidance on transition which ICBs can use:
NICE guideline [NG43]: Transition from children’s to adults’ services for young people using health or social care services
This NICE 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 it’s planned and carried out. It covers both health and social care. It includes recommendations on:
- overarching principles for good transition
- planning transition
- support before and after transfer
- the supporting infrastructure for transition
NICE quality standard [QS140]: Transition from children’s to adults’ services
This quality standard covers all young people (aged up to 25) using children’s health and social care services who are due to make the transition to adults’ services. This includes young people with disabilities and long-term, life-limiting or complex needs. It describes high-quality care in priority areas for improvement.
It sets out the following quality statements:
- Statement 1: Young people who will move from children’s to adults’ services start planning their transition with health and social care practitioners by school year 9 (aged 13 to 14 years), or immediately if they enter children’s services after school year 9.
- Statement 2: Young people who will move from children’s to adults’ services have an annual meeting to review transition planning.
- Statement 3: Young people who are moving from children’s to adults’ services have a named worker to coordinate care and support before, during and after transfer.
- Statement 4: Young people who will move from children’s to adults’ services meet a practitioner from each adults’ service they will move to before they transfer.
- Statement 5: Young people who have moved from children’s to adults’ services but do not attend their first meeting or appointment are contacted by adults’ services and given further opportunities to engage.
How healthcare services can work with social care and education
ICBs can take a system-wide approach to commissioning smooth and well-planned transitions to adult palliative care by working closely with local authorities and education providers.
Statutory guidance to support the Care Act 2014 states that local authorities must conduct social care transition assessments for all those who have likely needs and their carers. However, the timing of this assessment will depend on when it is of significant benefit to the young person or carer. This will generally be at the point when their needs for care and support as an adult can be predicted reasonably confidently, but will also depend on a range of other factors which are set out in the guidance.
The Special Educational Needs and Disabilities Code of Practice describes the duty on local authorities to ensure that all reviews of educational health and care plans from Year 9 (age 13-14) onwards include a focus on preparing for adulthood and, for 19-25 year olds, to consider whether educational or training outcomes specified in the EHC plan have been achieved.
There are no equivalent legal duties on the NHS to conduct transition assessments. However, so that care is co-ordinated for young people with life-limiting or life-threatening conditions, ICBs may wish to ensure that palliative and end of life care services begin planning for their transition to adulthood concurrently with social care and education providers.