The NICE guidelines on ADHD [21
] were developed by a multi-disciplinary professional group with expertise spanning CAMHS, paediatrics, AMHS, and education services. The guidance emphasises that ADHD is a lifespan condition and, for the first time in the UK, provides Guidelines for the development of transition services for this group as follows:
1. Transfer from CAMHS to adult services if patients continue to have significant symptoms of ADHD or other coexisting conditions that require treatment.
2. Transition should be planned in advance by referring and receiving services.
3. Patients should be reassessed at school leaving age and if treatment is necessary arrangements should be made for a smooth transition to adult services.
4. Timings of transition may vary but should be completed by 18 years.
5. During transition, CAMHS/paediatrics and adult services should consider meeting and full information about adult psychiatric services should be made available to the young person.
6. For young people age 16 or over CPA should be used as an aid to transfer.
7. After transition a comprehensive assessment should be carried out and patients should also be assessed for any coexisting conditions.
8. Trusts should ensure that specialist ADHD teams for children, young people and adults jointly develop age-appropriate training programmes for diagnosis and management of ADHD
This acknowledgement of ADHD as a lifelong condition has naturally led to a need for recommendations about how to best engage young people and achieve a smooth transition between child and adolescent services and adult mental health services, and general guidelines have also been produced, for example by the National Mental Health Development Unit [29
It is almost certainly the case that there is no single 'ideal' template for ADHD transition services. Different situations will require different solutions. However, we do believe that certain general practice points that cut across different patterns of service delivery should be taken into account when setting up such services. We have therefore extended and further developed the NICE Guidelines for commissioners and providers of healthcare services on the transition of young people from child to adult services. These are summarised as follows:
1. ADHD often continues into adulthood. A significant proportion of young people with ADHD will continue to need support and treatment from health service professionals when they reach adulthood.
2. Transition should be planned in advance by both referring and receiving services.
3. Timings of transition may vary but should ordinarily be completed by 18 years. Transition between teams should be a gradual process, e.g. a minimum period of six months.
4. ADHD services for children and adolescents vary considerably between regions (e.g. CAMHS, paediatrics, availability of shared care). It is essential that commissioners take local resources into account when designing transition service in order that realistic and deliverable provisions can be made within services that are often required to work at high capacity within strict budgets.
5. Clinicians providing services for children, young people and adults should ensure they keep abreast of evidence-based, up-to-date recommendations about the diagnosis and management of ADHD at different developmental stages as part of their continuing professional development.
6. A planned transfer to an appropriate adult service should be made if the young person continues to have significant symptoms of ADHD or other co-existing conditions that require treatment.
7. Appropriate adult services should include primary care, adult community mental health teams and access to specialist adult ADHD services.
8. Clear transition protocols should be developed jointly by commissioners, CAMHS/paediatric services, AMHS and primary care to facilitate transition and ensure standards of care are maintained during the transition period. These protocols should be developed with service users' involvement to ensure they meet the needs of the young people who will use them.
9. These transition protocols should be available to all clinical teams and should include psychoeducational material that provides high quality, comprehensive, impartial and appropriately written information for both young people and their parents/carers. This material should include information about ways that young people can manage their own symptoms and problems, and access advice and support. Information should also be developed in a media format that is readily accessed by young people, e.g. use of phone applications and internet sites.
10. Pre-transition: young people with ADHD should be reassessed at school leaving age by the service managing their care. They should be informed of the outcome of this assessment and transitioned according to need, e.g. to GP services, adult community mental health teams (community, learning disability or forensic as appropriate), specialist adult ADHD teams, or adult physical health teams where required. Both the patient and all adult/GP teams receiving referrals should be jointly informed of the patient's initial transition.
11. During transition: child and adult services should ideally have a joint transition appointment. Full information about adult psychiatric and GP services should be made available to the young person and their family. Full information about the young person's paediatric/CAMHS care should be available to the adult teams, including a detailed clinical transition report.
12. CAMHS practitioners and paediatricians should foster engagement with AMHS through open discussion and psychoeducation about ADHD, the benefit of evidenced based psychological and pharmacological treatment where appropriate, and the risks of disengagement. It is important to address concerns about stigma associated with referral to AMHS.
13. Joint meetings between child and adult services must ensure the needs of the young person will be appropriately met. This may involve further discussion and collaboration with educational and/or occupational agencies.
14. For young people age 16 or over in CAMHS, care in the UK 'Care Programme Arrangements' (CPA) should be used as an aid to transfer. CPA's are not available in paediatric practice and so a planned assessment of need with the young person and their parent and a clearly documented plan of action is recommended.
15. Parents and carers need to be prepared and facilitated to aid their children's gradually increasing independence and autonomy with their ADHD and its' treatment. Referring child and receiving adult/GP teams should be mindful of possible parental ADHD and support and manage this appropriately.
16. Post transition: a comprehensive assessment should be carried out by the receiving service. Patients should be re-assessed for any coexisting conditions and referred for assessment/treatment/support of associated difficulties, including co-morbid mental health/learning/educational/employment support.
17. Shared care arrangements between primary and secondary care services for the prescription and monitoring of ADHD medications should be continued into adulthood.
18. Direct psychological treatment should be considered (individual and/or group CBT) to support young people during key transitional stages. This should have a skills development focus and target a range of areas including social skills, interpersonal relationship problems (with peers and family), problem solving, self-control, listening skills and dealing with and expressing feelings. Active learning strategies should be used (e.g. see [30
19. Direct psychological treatment should be considered (individual and/or group CBT) to support young people who are experiencing symptom remission and/or stopping medication.
In developing this guidance, we have drawn on a review of the literature, the NICE guidelines, our clinical experience, and expert opinion. The guidance includes the need to involve service-users' feedback in the development of transition protocols and psychoeducational materials to include the information on self-management of symptoms and problems. Although this guidance should not be seen as prescriptive, we hope it can facilitate the planning process by helping to organize thinking and guide discussions among clinicians and commissioners.
Historically, the role of GPs in managing ADHD in children and adolescents has been restricted to shared care of prescribing with specialists in secondary care; the latter monitoring continuing care whilst GPs write the prescriptions. Indeed the Summary of Product Characteristics for the licensed ADHD medications all indicate the need for specialists to oversee and monitor the use of these medications in individual patients. However, transition patients will have often received many years of specialist care by CAMHS or paediatric services and the GP will have access to significant documentation of this care. Likewise, many GPs will already have been prescribing for this group, with specialist monitoring provided by paediatric/CAMHS teams. Thus it seems acceptable for GPs to manage a proportion of transitioning patients whose ADHD is stable on treatment, much as they manage cases of anxiety or depression. This again highlights the importance of primary care staff being provided with relevant training and adequate support, as well as the need to facilitate a quick and easy route back into specialist services if necessary. Likewise, specialist nurses can make a very important and helpful contribution to the management of adults with ADHD, as long as they are well trained in both ADHD and adult mental health problems and are given adequate support. However, it will still be necessary for a considerable proportion of patients to have their care managed by general AMHS, with a proportion of patients also referred to specialist adult ADHD services as required. Experience from managing children and adolescents with ADHD suggests that one potential model of care for this group would comprise a single care pathway, with agreed protocols for assessing and monitoring core ADHD symptoms, comorbid mental health, physical problems, common associated difficulties (e.g. relationship problems and occupational/academic problems), overall impairment, and managing both pharmacological and non-pharmacological treatments. Within this care pathway there would be different levels of care (e.g. GP only, GP + specialist nurse, AMHS, specialist adult ADHD services) with agreed protocols to assist decisions about who is managed at each level and how and when patients should move between levels with as little disruption to care as possible. Transition from child and adolescent services to this pathway should also be clearly described with the possibility of transition occurring at different ages/stages and in different ways as required.