Fourteen to Adult
Fourteen to Adult
Transition Planning For Health (Paediatric To Adult Transition) 14yr+
What is transition and transition planning?
(See Appendix 36 for Resources for transition planning)
Transition planning should begin at the latest by the age of 13/14 (Year 9 in school) although parents may wish to raise concerns before this and children can be involved in the gradual development of independence from the age of about 6/7. The health plan will be part of a wider transition plan that school, outside organisations, education, social care initiate and review annually from year 9. This plan will evolve over time as the young person explores preferences and opportunities and will need to be reviewed at regular intervals.
Parents and carers need to be clearly aware of the transition plans and have a named professional contact during the transition period. Transfer of care should be to the GP and/or adult specialist services for physical health interventions and to learning disability services for mental health, behavioural or epilepsy related interventions.
https://www.bacdis.org.uk/policy/documents/transition_moving-on-well.pdf is an excellent document with lots of valuable information and resources with support groups and websites that parents, young people and schools/colleges may find useful.
In terms of health, transition from community paediatric and specialist paediatric care will occur from aged 16 years onwards, depending on local service policies and this can be confusing. Eg the epilepsy team will transfer to adult neurology at aged 16 years, the community paediatrician will review annually until they leave school (this may be 19 years if they are in a special school), adult orthopaedic services or LD services will be from 18 years, the paediatric sleep service at the Evelina is up to 17yrs. It is always worth checking each service's guidance. Many paediatric specialist teams will do their own transition planning and referrals e.g. the paediatric epilepsy clinic runs joint clinics with the adult neurology doctors to prepare for transition. School nurses, SENCOs, social care and specialist nurses can all be involved and support this smooth process.
This integrated pathway is essential to outline the anticipated care a person with Down Syndrome may receive in adulthood from the multi-disciplinary and/or multi-agency care team. It incorporates both mental health and physical health needs. People with Down Syndrome on the whole do not have medical problems different from those in the general population but some medical conditions are overrepresented and most of these are treatable disorders that need to be recognised, diagnosed and treated accordingly.
All the therapies (physiotherapy, SLT, OT and the dysphagia team) form the Barnet Children’s Integrated Therapies.
(See Appendix 43 for Checklists in DS according to age)
GP Learning Disability Register LDR):
Everyone who has Down’s Syndrome should be registered on their GP practice (LDR). You can join the register at any age. If the GP practice knows a person has additional needs they can put reasonable adjustments in place to make sure they get the right healthcare when they need it. Registration is not automatic so it is a good idea to ask the receptionist at the GP practice to check if the person is on the LDR. If the person is not on the LDR, the receptionist will ask about their needs. This information will be put on the person’s Summary Care Record (SCR) so all health professionals at the practice know about their needs and how best to support them.
If the person is aged 16 years or older and they have capacity (See Appendix 46 - decision making and the Mental Capacity Act (MCA)), they must give their consent:
for information about their support needs to be added to their SCR
to which information can be shared and with whom
There is information about making everyday health, financial and welfare decisions post here.
The LDR is NOT the same as the Disability Register held by the Local Authority (Social Services).
Annual health check by GP - Directed Enhanced Service (DES) from age 14 years:
In 2010 the DSA surveyed its members to find out about their experiences of adult annual health checks. It was found that health checks were not being conducted in line with official guidance and basic checks critical for people with Down Syndrome were being missed.
DSA developed an adult Health Book to be used by people with Down Syndrome at their annual health check and other GP appointments. The Health Book was launched in March 2014 and is currently sent to all members with Down Syndrome over the age of 14.
The DSA therefore produced an area on its website specifically for GPs to be used in conjunction with the Health Book. (See Appendix 39) There is also NICE guidance on support for Disabled children and young people up to 25 with severe complex needs (See Appendix 41).
The annual health check for people with learning disabilities is a Directed Enhanced Service (DES). This is a special service or activity provided by GP practices that has been negotiated nationally. Practices can choose whether or not to provide this service. The Learning Disability DES was introduced in 2008 to improve healthcare and provide annual health checks for adults on the local authority learning disability register. To participate in this DES, staff from the GP practice need to attend a multi-professional education session run by their local Trust. The GP practice is then paid a sum of money for every annual health check undertaken. If the GP practice is not offering this, please make enquiries with the practice manager and GPs as to why, and discuss with your paediatrician.
Who can have one?
Annual health checks have been extended to include anyone with learning disabilities aged 14 years or above. So anyone with Down syndrome aged 14 years or over can have an annual health check.
All of DSA’s members with Down Syndrome who are 14 years old or over will be sent a free copy of the Health Book.
How to get an annual health check
The GP may get in touch with the person with Down Syndrome to offer an annual health check but this doesn’t always happen.
A person with Down Syndrome and/or a supporter can ask their GP for an annual health check. You do not need to be known to social services to ask for an annual health check. The community paediatrician will also notify the GP via letter, at their 13/14 year review, using a specific letter by our team (See Appendix 32).
How long should an annual health check be?
Guidance from the Royal College of GPs suggests half an hour with your GP and half an hour with the Practice nurse.
What areas of health should be looked at as part of the annual health check?
DSA has produced a check list for GPs which contains information about what should be included as part of a comprehensive and thorough annual health check. This includes a list of checks that everyone with a learning disability should undergo as part of an annual health check and a list of checks specific to people with Down Syndrome.
The Royal College of GPs have also produced a booklet on annual reviews for young people with a LD – it discusses reasonable adjustments, how to elicit a history and gives communication tips and additional support needs.
It is important to try and get at least some of the history from the person with Down Syndrome if possible. Family members/supporters may not be aware of some of the symptoms, may under or overestimate the significance or severity of a symptom, or may not realize the impact the illness is having on the person with Down Syndrome.
It is also important to try and establish how the illness is affecting the person’s functioning and behaviour (e.g. What is the baseline? How do they usually act or function? Are they acting or functioning differently?)
Some of the Health professionals that are involved:
Cardiology – clinical review may be indicated for cardiac symptoms or new murmurs. However, routine referral to congenital cardiology is not indicated. It is important for those children who have a cardiac condition or previous surgery, to document if prophylactic antibiotics are recommended by the child’s cardiologist for non-cardiac surgery and dental procedures. (GP or Community paediatrician to verify with consultant cardiologist if needed).
Ongoing hearing surveillance is essential/audiology
Ongoing vision surveillance is essential/ophthalmology/optician
Ongoing dental surveillance is essential/dentist
Adult endocrine team and/or paediatric endocrine services
GP for ongoing annual surveillance.
Adult learning disabilities team - specialist learning disability and mental health needs including: challenging behaviour, autism spectrum disorder, complex physical disability, mental health conditions, epilepsy, dementia, concerns around eating and drinking.
Learning disability acute liaison nurse (hospital based)
Primary care liaison nurses - Barnet have two dedicated GP Liaison nurses working closely with practices to raise awareness and provide support, in conjunction with the local community learning disability team which also runs health check training for practices alongside GP leads for learning Disabilities.
Community paediatrician until reached the age of transition to adult services (usually the last review is the year the young person leaves school).
Strategies for health professionals during transition:
Every clinic letter to GPs should include a transition summary – ‘Transition issues reviewed today were as follows…’ – or enclose a copy of any updated transition plan summary if used.
A portfolio of parent, paediatrician and therapy reports can be helpful when the young person moves into adult services, along with multi-agency reports as appropriate.
Consider using up-to-date communications technology to keep in touch with young people, e.g. a nurse could text a young person to remind them about medication to start promoting independence.
Checklist of things should be included as part of a comprehensive and thorough Annual Health Check
Useful letters for your GP and for a person with Down Syndrome (14 years+) can be found at Appendix 39
Covering letter for your GP (2015)
Covering letter for a PWDS (person with Down Syndrome) 14 + years old (2015)
Referrals for GP to consider:
Cardiology – clinical review may be indicated for cardiac symptoms or new murmurs. However, routine referral to congenital cardiology is not indicated (unless this has not been documented by the paediatric service e.g. new arrival in UK).
Ongoing hearing surveillance is essential
GP & Practice Nurse for ongoing annual surveillance DES.
Ongoing surveillance of Vision
Adult endocrine team if already under paediatric endocrine services
Ensure Transfer from paediatric to adult specialty services
Other professionals to consider linking in with:
Health
Adult learning disabilities team - specialist learning disability and mental health needs including: challenging behaviour, autism spectrum disorder, complex physical disability, mental health conditions, epilepsy, dementia, concerns around eating and drinking.
Learning disability acute liaison nurse
Primary care liaison nurses
Education:
The Connexions personal adviser:
From April 2008, responsibility for providing information, advice and guidance (IAG) services to young people passed to local authorities; schools and colleges will have the right to commission IAG from local providers including Connexions.
provides information and guidance for young people between the ages of 14 and 19 and for disabled young people up to the age of 25;
attends and contributes to the annual review and transition planning meetings in schools from Yr 9 (age 14);
offers young people and parents/carers advice about post-school and post education options; and
is responsible for overseeing delivery of the overall transition plan, liaising with others who have agreed to carry out actions, but is not responsible for arranging the specific provisions of other agencies.
Social care:
Social workers are based in children’s or adult services and cover a range of roles; the transition social worker (based in adult services) takes the lead, liaising with social workers from children’s disability or looked-after (in care) children’s teams.
attend the annual transition planning meetings (from age 14) in school; and
assess and organise provision to meet the care needs of the young person and their family.