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Planning for good health:
• Person-centred transition planning should enable young people to have a strong voice and focus on their hopes, aspirations and goals.
• Young people with disabilities and complex health needs should have a health plan as part of their transition plan; this should enable them and the people who support them to become knowledgeable, confident and competent in understanding and managing their health needs.
The Pathway sets out the main actions needed at each stage of transition to maximise good health outcomes for young people as they move into adulthood. We need to make sure that people with learning disabilities have good health, to collect statistics about health outcomes, and to monitor progress.
Where possible young people need:
• choice and control of the support they need for being healthy.
• To have a good health plan that can be fed into adult health services and can form the basis of their annual health check.
• To know how to keep healthy.
• To know that professionals who support them talk to each other across services.
• To know that other people understand how they communicate and how to communicate with them.
• We need to stress the importance of health checks and connecting young people with GPs and ordinary NHS health systems.
• Person-centred approaches to health planning with young people moving from children’s to adult health services are critically important.
• Young people and families need to know about personal health budgets and the possibilities these present for those with associated complex health needs.
• Gaps in the current health care system need to be evidenced e.g. postural care
• Person-centred plans should include important aspects of health planning. Many young people don’t have a person-centred plan and the people who support them don’t know about planning tools or how to do the planning. Person centred planning takes time to do properly.
• Only a minority of young people with learning disabilities have Health Action Plans.
• Young people with learning disabilities are not often known by their GPs and wider primary health care team because they have been supported throughout childhood by ‘specialist’ child health services. It is very important that GPs know disabled children and their families.
• Planning and commissioning of health care services for young people with learning disabilities in transition are often weak because they are unsupported by evidence of outcomes and underpinning data. The key to good planning is to have robust data. Some areas have established a register.
• Across health, transition and education providers there can be low expectations of people with learning disabilities and myths about capabilities and opportunities. As a result, we do not always put enough emphasis on how good health supports people to live full lives.
• Health care professionals can lack knowledge and training about learning disabilities, evidence of discrimination across all health care provision exists and needs to be challenged.
• Most young people do not receive annual health checks with their GP because they are supported outside ordinary health care services. This leads to systemic problems in the NHS, including poor data collection, poor planning and missed health care needs within primary health care systems.
• Some advice young people and their families receive about health is poor, uncoordinated and sometimes wrong.
• Raise expectations about good health among young people, families, medics and other professionals. Using this as an opportunity to develop local champions and best practice.
• Provide young people and their families with good information and empowering support. Ensure that they are at the heart of person-centred planning for health.
• Ensure that all young people develop a person-centred plan in which they and their family are fully engaged.
• Health plans need to carefully balance what is ‘important for’ young people’s health (what they need) with what is ‘important to’ the young person (what helps).
To find out more click on the content bars below where we have separated out what to think about concerning health and well being when preparing for Preparing for Adulthood annual reviews.
Last updated 12/09/18
Transition planning is better and more meaningful for young people and their families if all aspects of a young person having a good full life are considered.
Young people are likely to be healthier and happier if they have friends, good social lives and a job.
Young people who are planning for the future need to know what the changes to their health provision will be over the next few years.
Most young people with learning disabilities will have been part of a local child development centre, where they are seen by a number of health professionals.
Many are also seen by at least one hospital consultant, some by a Children’s and Adolescent Mental Health service, and others by a children’s hospice or similar community service. These specialist children’s services discharge young people at varying ages, and it is important for young people and their families to know when they will be discharged, and which service they will be referred on to.
They also need to know how adult health services work. If a young person has equipment and/or appliances, they need to know whether there will be a change of provider or whether they can keep their equipment. It is also important that the young person and their family know who will support them to develop their health plan:
- the school nurse
- a community nurse or
- a therapist
The most important purpose of the health plan is to make sure all the young person’s health needs are brought together in one accessible place, and that can be shared and mainstream health services get to know the young person and their health needs.
Most young people will have a much closer relationship with their GPs as they move into adulthood. It is important for children’s specialist health services to work with GPs and other mainstream health services. The health plan needs to contain information about who is supporting the young person
now, and who will be supporting them as they move into adulthood.
It is important to give young people and their families good accessible information, and for services to work together across disciplines and across children’s and adult services. There needs to be a clear understanding of who will attend transition planning meetings, who will support young people to develop their health plans, and how all staff working with this group of young people will be supported to carry out this work
The health plan needs to be reviewed and further developed.
By now, the plan should have brought together information from all services that know the young person, and all the young person’s health needs should be set out.
It is advisable to share the plan with the GP at this point, as the young person may soon be discharged by some of their specialist services.
Some young people will need a communication passport setting out how they communicate and what other people need to know in order to be able to communicate with them. This will avoid false assumptions and the failure to recognise the young person’s abilities and aspirations.
Young people and their families need to know about personal budgets and whether the local area is giving personal health budgets to people with complex health needs or lifelong conditions.
By year 11, the health plan should be clear about when the young person will be discharged from any services, and about who will be taking over responsibility for their health care.
The young person and their family should also have good accessible information about how to keep healthy and how to manage their health needs.
The local system needs to have protocols that set out clearly how specialist children’s health services liaise with mainstream and specialist adult health services, both strategically and with respect to the individual. It is particularly important that GPs are closely linked into children’s specialist health services and are aware of the young people they will become responsible for, their healthcare needs and how these can be met.
It is critical that the local health structures (e.g. GP consortia) gather information about young people’s health needs from their person-centred transition and health plans, so that these can inform strategic planning and commissioning.
The health plan is regularly reviewed and updated, so that the young person can share it with the people who support them.
Learning Disability Partnership Boards should make sure that their work around the health of adults with learning disabilities is closely linked to the healthcare needs of local children and young people, and that the services work well together across the age range.