Why are we failing young patients with ADHD?BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g6082 (Published 13 October 2014) Cite this as: BMJ 2014;349:g6082
- Simon Bowers, general practitioner and clinical vice chair, Liverpool CCG
Many clinicians will have spent time with a child or adult with a diagnosis of attention deficit hyperactivity disorder (ADHD) and wondered if they were just attention seeking, naughty, or badly parented. Some may have been all three. But it is clear that a definitive diagnosis, early intervention with evidence based treatments, and continued support through important stages of life can hugely improve the quality of life, academic performance, and economic prospects of someone with ADHD.
So why, in 2014, do we continue to fail children and their families and frustrate health professionals and teachers in England? The National Institute for Health and Care Excellence (NICE) says that 3-9% of UK school age children and young adults have ADHD (applying the DSM-IV criteria),1 although a freedom of information request from 2012 suggested that less than 3% of the population had a formal diagnosis.
The NICE guidance is clear: “Drug treatment for children and young people with ADHD should always form part of a comprehensive treatment plan that includes psychological, behavioural and educational advice, and interventions.” But only a few areas, such as Liverpool and Leicester, currently offer a pathway that includes such holistic interventions, offered in many cases by local and national charities or other non-NHS organisations. Even in these areas, however, waiting times for assessments or support can be measured in fractions of years, as embattled community paediatricians find themselves morphing into neurodevelopmental specialists by default, with endless follow-ups of stable children on medication.
The problem isn’t going to go away, as numbers continue to increase. In Liverpool last year, new diagnoses rose by 100%, with hospital and voluntary services struggling to keep up with demand. Even in a relatively well resourced pathway, services are running to stand still—to the point where we consider a four month wait for assessment to be a great achievement. Elsewhere in the country, the picture is far worse.
Schools fare little better, with some educationalists still doubting ADHD’s existence and very poor communication with health service colleagues regarding concerns about specific children. But poor communication is a two way street. When did you last talk to a teacher about a patient who worried you? For too long, it has been too easy to use confidentiality as an excuse.
The commissioning landscape further complicates things: the health service is reluctant to step out of its comfort zone, and local authorities—driven by dangerously limited finances—protect only what they are statutorily duty bound to deliver.
However, in my view it is precisely this confusing, cash strapped commissioning landscape that offers an opportunity for children and young adults with ADHD, by making it possible to commission integrated pathways delivering services that meet all of a patient’s needs. Clinical commissioning groups (CCGs) are, in many areas, the biggest public sector investors and can lead transformation with local authorities, providers, and schools. And CCGs’ clinical leadership brings a fresh perspective and a determination to do things differently; to take risks in the short term, for long term gain.
ADHD is unlikely to be a huge priority for most CCGs. My own, Liverpool CCG, is managing some of the worst health outcomes in Europe, more acute and specialist trusts than any city outside London, and a local authority that has just lost 52% of its income from government. How can I get my governing body and member practices excited about ADHD?
The answer is that having an accessible, holistic ADHD pathway is a fine example of “invest to save” and is easily sellable to clinicians, as they are precisely the people frustrated by current waiting times and poor patient experience. Every penny counts in the new world, but the successful commissioners will be the ones that see the wider benefits of what they commission.
Outcomes from a functional ADHD pathway may not be directly measured in health terms but in educational, welfare state, criminal justice, and economic terms. Health commissioners have been justifiably obsessed by the cost of medicines, but they must see the benefits of their spending in the context of outcomes for the patient. Unfortunately, that often takes years to realise, and we’re not great at tracking it. And it’s wrong to use psycho-educative interventions as an alternative to medicines in all children; a successful ADHD pathway will have appropriate access to assessments for both.
Thus, my priority in Liverpool is to see wise investment of the “Liverpool pound” across the whole sector. Yes, this is likely to mean additional investment from the CCG but, if all partners are engaged in the pathway design and goals are aligned, then the better services that result will always lead to better resource use across the system. I can’t think of a more important role for health and wellbeing boards than that.
The actual service design is not rocket science, either. Clear NICE guidelines remove a lot of uncertainty for commissioners, and many third sector organisations are a fantastic source of best practice knowledge and service provision. One such body, the ADHD Foundation, holds its annual conference in Liverpool this month, with experts from across the globe in attendance to discuss new innovations in pathway design.
With a clear commitment from commissioners, a robust approach to partnership, and a will to invest to save, children and young adults might face far better prospects.
Cite this as: BMJ 2014;349:g6082
I have read and understood the BMJ policy on declaration of interests and declare that I have no competing interests.
Provenance and peer review: Commissioned; not externally peer reviewed.