Transitions | Health (SEND)
When young people are at school, they may receive a variety of services, therapy and medical support through children’s health services. As young people leave school, their health needs should be met by adult health services. The time of transfer will depend on the service.
When it comes to Preparing for adulthood and Health, things are different from other areas of transition. Young people will often see a health professional for an “episode of care” (short period), for diagnosis and possibly treatment, and may be discharged. This means some people may seek treatment under adult services later on and do not necessarily need to be transferred in earnest.
The transfer from children’s clinic to adult services begins at around 16 years. The aim is to ensure the delivery of a well-planned transfer process for young people with long term health needs.
Time frame
The time of transfer from children’s health services to adult health services will depend on the service. It is important for a young person and their family to make links with the GP, as they should help to provide some continuity of support when the young person becomes 18.
ReadySteadyGo | (RSG)
Buckinghamshire Healthcare NHS Trust’s aim is to empower the young person and their parents/carers to manage their own health care. The plan is to use the “Ready, Steady, Go” Transition programme for young people aged 11 plus with long term medical conditions. This is currently in its early stages in Buckinghamshire.
How it works
There are 3 main questionnaires and each one can be completed over a period of 2 years, gradually increasing the young person’s knowledge and skills. This then helps young people take control of their lives equipping them with the skills and knowledge to manage their own healthcare.
- Questionnaire 1 is the "Ready" part and completed between the ages of 11 and 13 years.
- Questionnaire 2 is the "Steady" part and is completed between the ages of 14 or 15 years.
- Questionnaire 3 is the "Go" part and is completed between the ages of 16 to 18 years.
The questions are deliberately broad providing the opportunity for the healthcare professional to ask targeted questions specific to their condition. The answers are used to start the discussion which reveals whether the extent of the patient’s perception of their own knowledge and skills. Some are prone to misrepresentation- accidentally or otherwise, this is readily identified through discussion and the underlying issues can then be addressed.
The questionnaires also prompt appropriate engagement over potentially difficult issues such as sex and psychosocial concerns. Any issues which may arise are carefully addressed prior to transfer to adult services.
The intent of RSG is that the YP will be able to manage their healthcare successfully not just in their local adult service but in any adult service across the country - whether or not they have previously met the adult physician or GP to whom their care is transferred. Where the YP has learning difficulties the carer works through the RSG programme with the young person engaging as much as possible. Carers with a severely disabled young person also start RSG so that they too are prepared for the move to adult services; the programme allowing all concerns/issues to be carefully addressed and progress monitored prior to transfer.
Successful transition also needs carers to be part of the transition process. This is achieved by engaging with the carer over issues that are raised during the completion of the parent/carer questionnaire. RSG actively involves and supports them through the process thus making it easier for them to “let go” and allowing the young person to gain independence.
Who uses Ready Steady Go?
Buckinghamshire Healthcare NHS Trust.
Guide to using the Ready Steady Go Questionnaires
Age 11: Ready Steady Go Leaflet
Young people and their careers are introduced to the Ready Steady Go programme at around 11 years of age, if developmentally appropriate. They are introduced to ‘Ready Steady Go’ through the ‘Transition: moving into adult care’ information leaflet.
Age 11 to 13: Getting Ready questionnaire
At the next consultation, the young person completes the ‘Getting Ready’ questionnaire which, through a series of structured questions, is designed to establish what needs to be done for a successful move to adult services. Goals are agreed with the Young people and carer. The issues are not addressed in a single consultation but over the following 1 to 2 years in ‘bite-sized pieces’ at the right pace for the young person and carer. Progress and goals are recorded in the transition plan by the healthcare professional which remains in the patient notes. The carer completes a separate questionnaire which follows the same format as the Ready Steady Go questionnaires, alongside the YP, to ensure that they are also supported through the transition process.
Age 13 to 15: Ready questionnaire
In due course around age 13 to 14 years, the young person completes the ‘Steady’ questionnaire which covers the topics in greater depth. It is used to monitor progress on existing issues and ensure that any new issues that may arise are also identified and tackled at an appropriate pace over the following two years, again with agreed targets and goal setting. If necessary the carer may also fill in the parent/carer questionnaire again to ensure issues are addressed.
Age 16 to 18: Go questionnaire
This is followed by the ‘Go’ questionnaire at around 15 to 16 years of age to ensure that they have all the skills and knowledge in place to “Go” to adult services. Any issues are highlighted and once again goals are agreed and over the following years actions in preparation for the move to adult services. It is at the ‘Go’ stage that the young person is introduced to the adult team, at least a year prior to transfer, ideally, this should happen earlier in the programme if resources permit. The number of joint clinics with the adult team will be dependent on the needs of the young person and carer. The actual timing of the move to adult services is one that is mutually agreed by the YP, parents or carers and medical professionals.
Arrival in adult services
For a seamless transfer to adult services, the young person completes a ‘Hello to Adult Services’ their first clinic appointment in adult services. The questionnaire follow the same format as the Go questionnaire for familiarity and to support the continued delivery of holistic care, self-management and shared decision making in adult services. Any issues raised are addressed, goals set and progress monitored and recorded in the Hello to adult services transition plan. Every now and again the ‘Hello’ questionnaire is re-used to ensure they maintain knowledge and skill levels and that any new or on-going concerns or problems are addressed in ‘bite-size pieces. Goals are set. Progress and goals are documented in the transition plan by the healthcare professional which remains in the patient notes. The carer can complete a separate questionnaire if considered necessary and they wish.
There is a discrete ‘Hello to Adult Services’ programme that follows the same format as Ready Steady Go. This is used for YP and adults whose first presentation with a long-term condition is in adult services. Age and sub-speciality is not a barrier to using the programme.
Young people should ensure that their GP is actively supporting their health needs as they approach adulthood. They may be eligible to be on the Learning Difficulties register and be entitled to an annual medical with their GP.
GPs should be involved in planning for health transition as they should have copies of the CYP medical letters and reports. General Practice has a crucial role as it is the single service that does not change as a result of reaching adulthood.
They should ask tier hospital specialist about ReadySteadyGo, a tool to empower a young person and their parents/carers to manage their own health care
Children’s Services |
Adult Services |
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See the Mental Healthcare section below for more information. |
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The majority of Healthcare in Buckinghamshire is provided by Buckinghamshire Health Trust (BHT) with other Services provided by Oxford Health (OHFT). These are the two main providers.
Mental Healthcare
CAMHS, the Child and Adolescent Mental Health Service, is able to care for young people until the age of 18. A young person’s care may then be transferred to adult mental health services. CAMHS will support a young person through this transition and below is some information about what to expect during this time.
When will it happen?
When you reach 17 or 17and a half and it’s felt that some additional support may be needed for you after you turn 18, CAMHS will begin talking to you about the possibility of a transition to the Adult Mental Health Service in your area.
The steps to entering this service will take place over a period of at least 6 months before your eighteenth birthday. This is to make sure that you feel supported and not overwhelmed during these changes. It also gives you time to meet the new people you’ll be working with and time to finish the work you’ve been doing with your worker at CAMHS.
Sometimes a transition to adult mental health services might not be needed. If this is the case, instead you might continue work with CAMHS up until 18 or you might be referred to a different service in Buckinghamshire for example Time to talk counselling.
Important things to remember during your transition
At your first appointment at Adult Mental Health Services, your new worker may ask to hear a bit about your journey at CAMHS, this is because they feel it’s important to hear your views as well as your CAMHS worker. Remember you have the right to be heard about your care and your opinions matter.
This section refers to healthcare that needed beyond what all children and adults would normally receive. When a person has Special Educational Needs or a Disability (SEND) or complex needs, they may need additional healthcare. The additional care provided depends on the needs of the individual while the type of care and its funding varies for those under 18 and those over 18.
Continuing Care (birth to 18 years of age)
Continuing Care is the provision of a package of care around a child (under 18) with complex needs where these health needs cannot be met by the services which are routinely available from GP practices, hospitals or in the community commissioned by clinical commissioning groups (CCGs) or NHS England. A package of additional health support may be needed. This additional package of care has come to be known as Continuing Care. Children are assessed for eligibility and then a package of care is designed around the child.
Who to contact: GP or Continuing Care Team
NHS Continuing Healthcare (18 years and over)
NHS Continuing Healthcare is an ongoing package of health and social care that is arranged and funded by the NHS to those who have a primary health need. This care is provided to meet needs that come from a disability, accident or illness. There are significant differences between children and young people’s Continuing Care and NHS Continuing Healthcare for adults. Although a child or young person may be in receipt of a package of continuing care, they may not be eligible for NHS Continuing Healthcare or NHS-funded Nursing Care once they turn 18. To access NHS Continuing Healthcare it is likely that young people will have an assessment of their eligibility. It is important that families are informed and are involved in the assessment and planning.
Who to contact: Continuing Healthcare Team
If a young person is eligible for 'continuing healthcare' and is over 18 they have the right to ask for a personal health budget.
A personal health budget is an amount of money to support identified health and wellbeing needs (meeting the outcomes identified in their Education, Health and Care Plan). The aim is to give people with long-term conditions and disabilities greater choice and control over the healthcare and support they receive.
Personal health budgets work in a similar way to the personal budgets that many people are already using to manage and pay for their social care.
Annual health checks and flu jabs are available for young people and adults, aged 14 years old and over with a learning disability. An annual health check helps you stay well by talking about your health and finding any problems early, so you get the right care.
You do not have to be ill to have a health check – in fact, most people have their annual health check when they're feeling well. If you're worried about seeing a doctor, or there's anything they can do to make your visit better, let the doctor or nurse know. They'll help make sure it goes well for you.
What happened in an Annual Health Check?
During the health check, the GP or practice nurse will carry out the following for the patient:
- a general physical examination, including checking their weight, heart rate, blood pressure and taking blood and urine samples
- assessing the patient’s behaviour, including asking questions about their lifestyle, and mental health
- a check for epilepsy
- a check on any prescribed medicines the patient is currently taking
- a check on whether any chronic illnesses, such as asthma or diabetes, are being well managed
- a review of any arrangements with other health professionals, such as physiotherapists or speech therapists
If the person's learning disability has a specific cause, the GP or practice nurse will often do extra tests for particular health risks. For people with Down's syndrome, for example, they may do a test to see whether their thyroid is working properly. The Annual Health Check may also be a good opportunity to review any transitional arrangements that take place when the patient turns 18
How do you get an appointment?
Adults and young people aged 14 or over with a learning disability who are on the GP practice learning disability register should be invited by their GP practice to come for an annual health check.
What if my GP doesn’t offer the annual health check?
Most GP surgeries offer annual health checks to people with a learning disability. However, GP surgeries don't have to offer this service.
If your GP surgery hasn't offered you an annual health check, you can ask them if they could provide one. If they say no, ask your local community learning disability team for advice. They should be able to help you access an annual health check.
Find local learning disability services
Annual Health Check Factsheet by Contact
This factsheet is for parents of a child or young person with a learning disability. It has information on GP learning disability registers and annual health checks, why they are important and how you can support your child or young person to access the services they are entitled to.
Video on Annual Health Checks
The Health Passport was made to improve the health with all people with a learning disability by providing information in a format that is easier to understand. They also enable the people providing support to have better information about the health needs of the individual and the best way to help them. Health Passports may feature things like likes, dislikes, conditions, allergies, how a person likes to be addressed and health history.
How do I get a health Passport?
Talkback can design Health Passports for you.
Where can Health Passports be used?
Across Buckinghamshire, Milton Keynes and Central Bedfordshire.
Freephone: 0808 808 1111 (9 am to 5 pm, Monday to Friday)
Provides useful information and advice for people with learning disabilities, their families and carers.
The Family Carer Support Service
Freephone: 0808 801 0448
For one to one support and advice to family carers supporting a relative with a learning disability. They also run events and produce guides written specifically for family carers.
Bucks Early Intervention Service
Provide Early Intervention Services by working in a range of ways with individuals aged 14 to 65 years who are experiencing their first episode of psychosis.
Provides expertise and support to local authorities and their partners to embed preparing for adulthood from the earliest years.
Transition from children’s to adults' services for young people using health or social care services.
Young People with Downs Syndrome
A brief summary as to what you should be doing when. You may also be interested in our factsheet on education rights for young people age 16+.
Young People with Complex Needs
A one-stop booklet for families produced by The Foundation for People with Learning Disabilities.
Young People with Autism | Transition support service (NAS)
Free service by National Autistic Society for young autistic people aged 14 years plus and their parents or carers, looking for information and advice on the transition to adulthood. This includes young people preparing to leave school as well as further and higher education.
Mental Health and Transition Videos
Young people describe, in an intensely personal way, how the transition from CAMHS felt for them.