Rashid Zaman and Ulrich Muller

Adult ADHD has matured, clinicians recognise it, treatment is needed, but will commissioners pay for it?

Dr Rashid Zaman BSc (Hons) MB BChir (Cantab) DGM MRCGP MRCPsych Consultant Psychiatrist & Director BCMHR-CU Hon. Visiting Fellow, University of Cambridge SEPT & Dept of Psychiatry University of Cambridge Email: [email protected] http://www.bcmhr-cu.org/

Dr Ulrich Muller MD PhD University Lecturer Hon. Consultant CPFT Lead Consultant: Adult ADHD Research Clinic Department of Psychiatry University of Cambridge Email: [email protected] www.ukaan.org

Contrary to the commonly held view, Adult ADHD is surprisingly a common psychiatric disorder with global prevalence of 2.5% or higher (1).

Compared to the prevalence of ADHD in childhood, a decline in numbers in adults is recognised when applying strict operational definitions. Although many children with ADHD show improvement as they mature in to adulthood, a significant number continue to have problems. Moreover, a number of adults with ADHD are not picked up as children and present for the first time in adulthood.

A number of factors lead to an under recognition, resulting in significant morbidity with individual and societal costs. Lack of knowledge about adult ADHD in the general public, as well as amongst many professionals is further hampered by certain differences in how adult ADHD presents when compared with childhood ADHD. These differences include poorer control of executive functions such as, memory, self-regulation of affect and motivation along with less obvious hyperactivity and impulsivity.

Whilst the negative impact of having adult ADHD on individual’s personal, educational and career development in the general population is beginning to be recognised, the research suggests a far greater prevalence of ADHD in those involved in the criminal justice system. It is also said that that ADHD is the most important predictor of offences involving violence, even trumping substance abuse (2).

Under recognition of adult ADHD, along with its negative impact on individual sufferers, their families, friends and society at large has led to the conclusion that the problem is far greater than previously thought and indeed there are huge monetary and non- monetary costs to the individual sufferer, as well as to society at large (3).

Until recently there has been some resistance to the acceptance of this disorder as a valid condition, with many describing ADHD as an American concept, partly reinforced by the fact that most of the research has been performed in United States. However, the evidence from research carried in other countries has countered such thinking (4).

So how is adult ADHD best managed?

Good management requires availability of trained professionals, ideally as part of a multidisciplinary team who will accurately identify, recognise co-morbid conditions, and carry out comprehensive assessment, commence treatment and follow a shared care protocol with primary care services.

The wealth of clinical experience, research and indeed NICE guidelines clearly suggest the pivotal role medications (stimulants such as methyl phenidate or atomoxetine) play in the management of this disorder. However, like most psychiatric disorders, medications alone are not sufficient and in addition there is need for a comprehensive package of psychosocial treatment (CBT, psycho-education and support groups etc) (2).

The first guidelines for the diagnosis of adult ADHD from British Association for Psychopharmacology (5) were soon followed by more comprehensive guidelines from NICE (3).

The first line pharmacological treatment recommended by NICE for adult ADHD is methylphenidate (Ritalin, Concerta XL) or dexamphetamine. Whilst the second-line choice of medication is atomoxetine, the third-line options include bupropion, modafinil and antidepressants with noradrenergic effects such as imipramine, venlafaxine and reboxetine (3).

Though pharmacological treatments remain the cornerstone of effective management of adult ADHD, the role of psychotherapeutic interventions, which include psychoeducation, utilisation of support groups, coaching, counseling and CBT, is just as essential. Psychotherapeutic intervention, particularly support from family, friends, support groups and employers is helpful, and indeed should begin from the time of diagnosis. It is also useful to help the sufferers develop structure to their daily lives, improve their interpersonal skills so they can achieve their maximum potential in whatever setting they find themselves (3).

Adult ADHD as a significant psychiatric disorder is increasingly being recognised by the UK general public and health care professionals, including, psychiatrists. However, despite NICE recommendations, there remains a great variation in provision of treatment and services available in different parts of the UK. There appear to be variations in approaches being used and inconsistency in the availability of effective services throughout the country.

A funded tertiary care model such as that of Maudsley hospital provides not only a service for the local population, but also for various NHS mental health Trusts and primary care Trusts. Whilst providing a high quality service, it is not always easy for many patients to travel long distances and receive continuous care, indeed sharing care with primary care can be problematic.

A tertiary model of care, currently not funded by the NHS, is also provided in Cambridge and is led by one of us (UM). Despite comprehensive assessments, diagnoses and clear management plans, the monitoring and providing of a full and complete shared care service has been fraught with difficulties due to lack of NHS funding at current time. The Cambridge service not only provides a service for the local population, but also for the rest of East Anglia, often with direct referral from GPs who may not be aware of the arrangements of service provisions in local NHS Trusts, if any.

Whilst presence of adult ADHD in the criminal justice system rightly deserves attention, what may surprise many is the presence of a number of Cambridge University students who are facing difficulties due to having adult ADHD. A good example of the excellent work the Cambridge clinic has done can be gleaned from quotes from a letter from Helen Duncan, Disabilities Adviser, Disability Resource Centre, University of Cambridge:

“We, at the Disability Resource Centre (DRC), are immensely grateful for the work that your clinic does with Adult ADHD. I see the students both before and after they have come to you at the clinic and the difference that I see in the student during this time- frame, owing to your work, is quite remarkable……. This is why their experience with your clinic is so life changing……….If an Adult ADHD Service could be set up to provide a medication prescribing and monitoring service this would be of such immense help to our students and complete the cycle of the truly excellent work that you do - from assessment through to treatment. This service really does change lives, but we desperately need the final element.”

At current time, one of us (RZ) with support from the Trust management, is also in the process of negotiating with local commissioners for the development of a local service in Bedford that would have links with Cambridge and other academic institutions as part of a new research network.

Along with the tertiary care model, there is also the primary care model, where referrals are accepted directly from the GP, patients are diagnosed, commenced on treatment then returned to primary care using a shared care protocol. This too has some limitations.

So what can be done to improve the current somewhat unsatisfactory situation in the UK?

Along with BAP and NICE guidelines, further progress came about with setting up of The United Kingdom Adult ADHD Network (UKAAN) by a group of practitioner experts in ADHD. This included two members who participated in the NICE Guideline Development Group and two service-user representatives.

UKAAN has already organised a number of educational events which have included a national foundational conference which focused on service development and guideline implementation, a specialist meeting on neuropsychology of ADHD, a meeting of specialists who focused on ADHD in a forensic context, and a national conference on models of services. Information about UKAAN and its publications can be accessed at: http://ukaan.org/. Members of UKAAN have organised a series of 2-day training workshops organised in collaboration with the Royal College of Psychiatrists. What next?

Good work is being attempted by many individuals at national and local levels in trying to change the current unsatisfactory situation. However, though having BAP and NICE guidelines and indeed UKAAN is of great help, we feel the situation could be further improved by creation of Adult ADHD network within the Royal College of Psychiatrists. This network would utilise experience and expertise of members to provide mutual support for what clearly is a difficult task ahead. We therefore ask all interested professionals to get in touch and if there is sufficient interest we will begin the process of creating an adult ADHD network.

References

1. Simon V, Czobor P, Bálint S, Mészáros A, Bitter I: Prevalence and correlates of adult attention- deficit hyperactivity disorder: meta-analysis British Journal of Psychiatry 2009, 194:204-211

2. Young S, Wells J, Gudjonsson G Predictors of offending among prisoners: the role of attention-deficit hyperactivity disorder and substance use J Psychopharmacol. 2010 Jun 17 (ahead of print)

3 National Institute for Health and Clinical Excellence Attention deficit hyperactivity disorder: the diagnosis and management of ADHD in children, young people and adults. 2008 www.nice.org.uk/nicemedia/pdf/CG72NiceGuidelinev3.pdf

4 Fayyad J., De Graaf R, Kessler R, Alonso J, Angermeyer M, Demyttenaere K, De Girolamo G, Haro JM, KAram EG, Lara C, Lepine JP, Ormel J, Posada-Villa AM, Zaslavsky M, Jin R Cross-national prevalence and correlates of adult attention –deficit hyperactivity disorder. British Journal of Psychiatry 2007, 190: 402-409

5. Nutt DJ, Fone K, Asherson P, Bramble D, Hill P, Matthews K, Morris KA, Santosh P, Sonuga-Barke E, Taylor E, Weiss M, Young S Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: recommendations from the British Association for Psychopharmacology J Psychopharmacol. 2007 Jan;2(1):10-41