ADHD diagnosis rates in the UK

Unfortunately, in the UK at least, many of those with ADHD will not have received a diagnosis or any treatment during childhood or adolescence. Recent figures from Scotland suggest that despite increases in recognition over the past 20 years ADHD is still significantly under-diagnosed. Even in the regions with the highest rates of recognition only around one in five of those with ADHD are currently being diagnosed. ² There is also very significant variation between regions and in the most densely populated areas of Scotland the rates of recognition are even lower, with diagnosis and treatment rates running between 6 and 13% of the epidemiological prevalence. ² This same situation, both with respect to under-recognition and regional variability, is almost certainly replicated across the rest of the UK.

As a consequence, it seems very likely that those individuals who are being identified, diagnosed and treated are those with the most severe symptoms and impairments. They are also the group that is most likely to need continuing services and the greatest support during transition. It comes as no surprise to me to hear that transition was generally not well managed in either of the services covered in the audit and I recognise many of the comments in the discussion about the problems of transition only too well from my own clinical experience. From the CAMHS perspective it is often difficult to have the conversation about what the young person should expect from adult services when you are fully aware that in reality this depends a great deal on who picks up the case. It is much easier to hold on to cases well past the official transition date but this is neither good clinical practice – the needs of young adults are different and deserve to be treated by adult-oriented services – nor a good way to develop these much needed services.

Guidelines for service transition

Acknowledging the challenges of developing these, essentially new, services, we have produced guidance for the establishment of transition services. ^{Reference Young, Murphy and Coghill3} These built on NICE recommendations ⁴ and include suggestions that:

1. • a planned transfer to an appropriate adult service should be made if the young person continues to have significant symptoms of ADHD or other coexisting conditions that require treatment;

2. • transition should be planned in advance by both referring and receiving services;

3. • transition between teams should be a gradual process, e.g. lasting a minimum of 6 months;

4. • clear transition protocols should be developed jointly by commissioners, CAMHS/paediatric services, adult mental health services (AMHS) and primary care to facilitate transition and ensure that standards of care are maintained during the transition period;

5. • 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;

6. • during transition, child and adult services should ideally have a joint transition appointment; during these meetings both services must ensure the needs of the young person will be appropriately met, which may involve further discussion and collaboration with educational and/or occupational agencies;

7. • post-transition: a comprehensive assessment should be carried out by the receiving service and this should include a reassessment for comorbid conditions;

8. • shared-care arrangements between primary and secondary care services for the prescription and monitoring of ADHD medications should be continued into adulthood.

Admittedly, these may seem to be relatively demanding recommendations, but the ongoing burden will be considerably lessened if they are underpinned by good-quality commissioning and planning. Getting the transition arrangements right should help to set the right tone for broader service planning. It should also strengthen the relationships between the child and adult services and facilitate joint learning, protocol development and planning.

ADHD pharmacological treatment: competence issues

In contrast to the clear issues hindering transition, it was very encouraging to see that both audited services were generally doing very well with respect to the assessment of not only the core ADHD symptoms but also the physical needs and coexisting conditions as well as in the initiation of medication treatment. This clearly indicates that it is possible for adult services to develop the required skills and integrate them into day-to-day practice. Although I do not believe this was ever in doubt, it is not uncommon to hear colleagues say that they feel out of their depth when dealing with these patients. There are now increasing opportunities for training in the assessment and management of adults with ADHD. In particular, the UK Adult ADHD Network (UKAAN; www.ukaan.org) has developed, and can deliver, high-quality training within the UK and has produced a helpful handbook for clinicians. ^{Reference Asherson, Young, Adamou, Bolea, Coghill and Gudjonsson5} There are also recently updated guidelines from the British Association of Psychopharmacology. ^{Reference Bolea-Alamanac, Nutt, Adamou, Asherson, Bazire and Coghill6}

It has become clear in recent years that the pharmacological management of ADHD is a skilled task and that whereas the basic principles of treatment are relatively simple, it is not so easy to ensure that treatment is first optimised and then continues to work well over time. ^{Reference Molina, Hinshaw, Swanson, Arnold, Vitiello and Jensen7,Reference Langley, Fowler, Ford, Thapar, van den Bree and Harold8}

A new way of delivering services

While the optimal configuration of services is still being debated, I strongly support the use of multidisciplinary skills in the delivery of care. It is certainly not the case that all clinical care needs to be delivered by a doctor. In Dundee we have successfully developed a pathway that is primarily delivered by trained nursing staff, most of whom are not prescribers. These skilled nurses run parallel clinics, often as many as five at a time, supported by a senior medical staff member (usually a consultant), who works as a ‘floating doctor’ across the clinics providing support as required and overseeing changes in medication. I am aware that several adult services have also been successful in adopting a similar nurse-led service model and believe this is the way forward for ADHD services across the age range. Clinical psychologists, occupational therapists, dieticians, a range of psychological therapists and voluntary sector staff can also play a very important role in providing holistic care and their involvement should be encouraged wherever possible. It is not essential, or often desirable, for everyone to be part of a physical team and there can be great benefits from adopting a ‘virtual team’ approach with a clear and shared clinical pathway.

Another important point raised by the audit is the current difficulty accessing non-pharmacological treatments. It is true that we do not yet have a solid evidence base for non-pharmacological approaches to the management of ADHD in adults, nevertheless I believe that NICE was correct to highlight the potential importance of broader approaches to treatment. As pointed out by Magon and colleagues, there are now a range of psychological therapies, most of which use a cognitive–behavioural therapy (CBT) approach. The problem seems to be getting those with the skills to deliver such programmes actually interested in doing so. Similar problems have arisen in effectively delivering behavioural parenting approaches. Here one solution has been to engage partners from outside the healthcare spectrum, often third-sector voluntary agencies, in delivery. It is not yet clear how this will work out for adult services. It may be the case that we have to wait until more clinical psychologists and/or appropriately trained nurse practitioners are ready to step up to the plate and start to provide a sound base of practice skills from which work can expand. Or it may be that, as suggested by Magon and colleagues, opportunities will arrive through the development of stronger and more active local ADHD support groups working in partnership with the voluntary sector.

The last point I would like to pick up on is that there were quite a few instances where the practice of the two audited services differed considerably. This is in line with the clear geographic differences in provision of services to children and young people. However, even though some degree of variability between services is of course inevitable, in ADHD very high levels seem to be the norm. Some of this variability will represent historical differences based on individual or service-level beliefs about the validity of ADHD and the use of medication to treat it and will have predated the provision of clear clinical guidelines. However, the introduction of guidelines does not seem to have led to increased uniformity in service delivery for child services ^2,11 and I suspect it will take a lot of hard work to ensure greater uniformity in the development of services for adults. Audits such as this are a good starting point and I again thank Magon and colleagues for getting the ball rolling.