Keeping healthy and being able to manage your own medical needs is a very important part in preparing for adult life. Good health affects the support you need in your school and college life, finding a job, finding somewhere to live and being part of your community. Find out more about looking after your health.
For some of you who have lots of health needs (sometimes called complex health needs or long term conditions), there will be many changes to how you will receive your health support when you become an adult.
Some of you will also need medical help to support you to communicate with other people, with how you behave and any difficulties you may have in dealing with your feelings (sometimes called your mental health).
There are lots of guides which tell health professionals (people paid to support you) how to do this well. Two very important ones are:
Both of these documents are written by the Department of Health.
Many of you will already have lots of information written about your health needs including your own healthcare plan issued by your school. It is important that this information is used as you prepare your transition to adult life.
Like all good transition planning your move from children to adult health services needs to start early, at least by the age of 14, and be led by you and your family. It should have the purpose of producing good health outcomes.
You and your family should be able to ask questions, express opinions and make decisions, and health, school and social services staff should listen and represent your views as part of your overall transition planning.
Your healthcare plan should clearly show the health support you need in all settings, including: hospital, school, home, employment and when you are in the community.
The healthcare plan should also show how you will receive your health support, including naming the key professionals involved in planning your transfer between children and adult health services and those responsible for delivering your health care support when you become an adult.
Your healthcare plan should also make sure that, as far as possible, you are supported to manage your own medical condition and that you have plenty of time to meet all new staff so that you feel safe and confident with your new arrangements.
All healthcare plans need to be person-centred to you and your particular health needs. The health needs of young people will range across a variety of medical conditions such as: physical disabilities, learning disabilities, behavioural disabilities, mental health and life-limiting conditions, and many plans will call for a number of specialist health staff to be involved.
If you have an Education, Health and Care (EHC) plan your health needs will be recorded as part of your plan. For those of you without a plan, your need for good health outcomes is no less important and should also be written down as part of your transition planning.
Regardless of which health transition pathway you find yourself on as part of your journey to adulthood, you should expect this good practice guidance to be followed:
The way in which you move from paediatric (children’s) health care to the adult health care system is very important to your continued health support.
The main difference is that as a child you normally have just one community paediatrician (doctor) who is not necessarily an expert in your condition (although some of you may also have specialist doctors called consultants). In the adult health system your GP (local doctor) will look after your general health and you may have one or more consultants for each of your conditions. Unlike your paediatrician, these consultants may have a more short-term involvement in your health which you and your family may not be used to.
If your paediatrician and specialist child health services have been very involved in meeting your health needs, you may find that your GP may not know a lot about you.
It is therefore very important that although your paediatrician and specialist paediatric nursing teams are likely to be very important in your health planning and in bridging any possible health transition gap between children’s and adults’ services, that you also involve your GP in your health planning.
Good transition planning is also helped by having a key health lead who can make sure that your health needs are recorded in your health plan and that the plan itself is written into your Education, Health and Care (EHC) plan, as well as being included in any Health Action Plan or Health Passport.
A Keyworker Service is currently offered to young people receiving support from the Community Nursing Teams. Keyworkers make sure that the health professionals working with you, do so in a joined up way.
It is also important to make sure that you receive regular health checks every year, and they will help to develop your Health Action Plan. The Government has now made health checks available to all young people with a learning disability from age 14 years.
Specialist healthcare will often form part of an Education, Health and Care (EHC) plan.
For those of you without an EHC Plan, the necessity for health transition planning is no less important when long-standing child health support will be replaced by new adult health services. Therefore, support from specialist health staff is available to all young people with a learning disability who are unable to access mainstream services.
Our Adult Learning Disability Service has within it a combination of health and social care staff including: social workers, learning disability nurses, speech and language therapists, physiotherapists, occupational therapists and clinical psychologists.
These teams also support young people with autism and have specialist nurses for clients who have behaviours that may challenge, complex health needs and a presentation of mental health.
It is important to also remember that even if a young person with a learning disability does not qualify for social services support they may nevertheless be eligible for specialist health support.
Starfish and Starfish Plus
These are specialist health teams for young people up to the age of 18 who have a learning disability as well as another condition that is linked to their emotional or mental health. This includes behaviours that may challenge and young people with autism.
Starfish health teams often support young people moving into adulthood by working closely with the Adult Learning Disability Teams to make sure that everyone is aware of how best to support a young person’s health needs when they reach 18. Find out more:
Acute Liaison Nurses
These are specialist nurses who are based in mainstream hospitals in Norfolk who have the job of supporting people with a learning disability who may need to come to the hospital for an appointment, some of whom may need to stay overnight.
Find out more about the Acute Liaison Nursing Service for Adults with Learning Disabilities.
Some young people may have complex health needs that need education, health and social care services to all help out. Sometimes young people get support from health services by being funded to attend an independent special school either in Norfolk or in another county. Health Services may also offer residential respite care in places such as The Squirrels and Little Acorns.
Staff from education, health and social services meet every month to discuss children and young people who may need support from all three services.
When planning health transitions it is important that professionals providing education and respite support for you as a child, speak to the adult health and social care workers. This makes sure that everyone is aware that when you reach 18 years of age, you may continue to need specialist health input in education and to have regular breaks away from the family home.
Adult health workers, staff at Further Education colleges and adult social care workers are all able to support young people with particular health needs in education and with special respite facilities such as Mill Lodge, which has a staff of trained learning disability nurses.
Continuing Care for children up to the age of 18 is required when a child or young person’s complex health needs cannot be met by existing universal (mainstream) or specialist services.
Continuing Care is often part of a wider package of care agreed and delivered by collaboration between health, education and social care. There is a team of specialist health workers who make sure that you have the right support if you receive Continuing Care.
The people who make the decision whether or not you qualify (can get) Continuing Care funding is the Children’s Complex Cases Panel.
It is very important when planning your transition to make sure that someone from Continuing Care attends any Education Health & Care (EHC) plan or other transition planning meetings so that future planning, including funding decisions, can be made.
It is also important to note that you may lose your entitlement to Continuing Care if you no longer meet the eligibility criteria (the rules), which can happen if your condition improves.
However, if you continue to have complex health needs, when you reach 18 years of age you may transfer to what is called adult Continuing Healthcare. Just like Continuing Care you will need to be assessed to make sure that you are eligible.
The National Health Service (usually called the NHS) who are responsible for both Continuing Care and Continuing Healthcare have given the job of supporting children and young people to groups of local GP’s. These are called Clinical Commissioning Groups (or CCG’s).
The NHS has also written down how transition health planning should be carried out including setting out the timeframe for completing assessments to ensure that there is no gap in a young person’s support. The document for children is called The National Framework for Children and Young People’s Continuing Care 2015/2016.
Adult Continuing Healthcare means a package of ongoing health and social care for someone over 18 that is arranged and funded solely by the NHS where the person has been found to have a ‘primary health need’ arising from a disability, accident or illness.
This means that if your main needs are related to your health condition and you meet the eligibility for adult Continuing Healthcare, then the NHS will be responsible and pay for both your health and social care.
Even if you did not qualify for Continuing Care as a child you may still qualify for Continuing Healthcare as an adult. Therefore both children’s and adult’s health and social care services should ask the NHS to consider (called a referral) any young person who they think may qualify.
If you have either complex health needs or are getting Continuing Care as a child or may get Continuing Healthcare as an adult, it is more likely that there could be many people involved in your transition planning. It is therefore very important that you know which person is responsible for certain things such as making referrals and paying for your support.
Having a transition health plan will make sure that everyone knows what they should be doing and that you and your parents are aware of all the people involved in your health transition.
Some of you may need to have a new specialist adult physiotherapist, occupational therapist, learning disabilities nurse or speech and language therapist, as you move to college, day services, employment respite care or a new home.
It is important that the people who support you as a child, speak to their colleagues in adult health in plenty of time so that all staff in these services are fully trained to meet your health needs and all changes to adult equipment and any adaptations (changes to buildings) are made.
The CCG’s who fund adult Continuing Healthcare do not have specialist staff to help you in your health transition to new services and instead rely on the specialist staff from the Adult Learning Disability Service.
The NHS has written down what needs to happen in your transition health planning to adult Continuing Healthcare, including the timeframe for completing assessments to ensure that there is no gap in a young person’s support. The document for adults is called The National Framework for NHS Continuing Healthcare and NHS Funded Nursing Care 2013.
Together for Short Lives offers transition support for young people with life-limiting or life-threatening conditions which sets out a pathway for moving from child-centred to adult orientated health care systems. It sets out a number of key standards and goals across healthcare, social care, education, work and housing.
Transition planning for these young people may include parallel planning to ensure that transition planning recognises the need to acknowledge that a young person’s condition may deteriorate and may require end of life care.
Some children and young people will have access to specialist paediatric nursing services, home support and residential respite services such as The Squirrels and Little Acorns or support from Quidenham Hospice (EACH). Many will get continuing care and qualify for adult Continuing Healthcare.
It is very important that both health and social care planning for all young people with life limiting conditions begins early and where possible there is an overlap in children and adult health services to make sure that their transition is as smooth as possible with new staff gaining experience from existing staff.
For example, young people can remain at Quidenham Hospice (EACH) until they are 19 years of age, but can also access Mill Lodge when they are 18 years of age, giving a young person and staff a year to complete a successful transition.
Health support for young people with mental ill health comes from the Children and Adolescent Mental Health Service (CAMHS). It is very important that health staff working with CAMHS are aware of any ongoing health or social care needs when a young person reaches adulthood.
Referrals for health services should be made in good time to NHS adult Mental Health Services, and for future social care services to Norfolk County Council’s adult mental health social care team.
CAMHS must also make sure that they are fully involved with the education planning process for young people both with and without an Education Health and Care (EHC) plan.