By Ann Donald
April 16, 2007
Attention deficit hyperactivity disorder (ADHD) in Scotland is currently under scrutiny. This June sees the publication of the first part of an audit from NHS watchdog Quality Improvement Scotland (QIS) into the care and treatment of Scottish children with difficulties of attention, concentration and impulsivity.
Meanwhile, at an international conference about ADHD held at Edinburgh University last month, neurologist Baroness Susan Greenfield warned of the potentially harmful long-term effect of drugs commonly used to treat ADHD on the developing brains of young children.
This is particularly pertinent given the 10-fold increase from 1996 to 2004 in Scottish prescriptions for methylphenidate - the generic name for the psychoactive drug widely known as Ritalin.
The QIS audit is designed in part to shed light on concerns and investigate the wildly differing levels of diagnosis and treatment in Scotland and the UK.
Fife Council, which is the largest single user of drugs to treat ADHD in Scotland, is already looking for alternatives to the purely medicinal response. For several years, the region has diagnosed more children than in other parts of the country.
Records from 2005-6 showed that the region recorded 180 prescriptions for every 1000 5-14 year olds, compared to the Scottish average of just under 83 per 1000 children. At the Edinburgh conference it was revealed that the Levenmouth project, a community-based multi-agency scheme to examine the issue, has looked in depth at 20 cases and concluded that 18 of the Fife children on the waiting list to be diagnosed as ADHD were not actually suitable for referral.
The consultant paediatrician at Kirkcaldy's Victoria Hospital who diagnoses and treats many of children with ADHD in Fife is Dr Chris Steer.
He believes, however, that far from being overdiagnosed, far more children in Fife, and across the UK, are affected by ADHD than official figures suggest.
A member of the NHS QIS steering committee and a key member of the Scottish Intercollegiate Guidelines (SIGN) ADHD Guideline development group, Dr Steer attributes Fife's high figures partly to the pro-active ADHD team - one of five in Scotland - which he leads at the hospital.
He stresses that diagnosis of ADHD is only made after a rigorous one to two-hour assessment, taking into consideration home and school reports, and adds: "There are many ADHD lookalikes, including disruptive behaviour, but it is not the same as ADHD."
Dr Steer says: "According to SIGN and to the National Institute of Clinical Excellence (NICE), 5% of all Scottish schoolchildren would be expected to have ADHD." According to Dr Steer, privy to the latest and unreleased figures from the NHS QIS audit, Fife is currently diagnosing 1% of children while in the un-named least prevalent health board, that figure is 0.2%. He says: "The question we should be asking is, why aren't the other four-fifths of children being diagnosed and treated?"
However, Dr Gwynedd Lloyd, senior lecturer in educational studies at Edinburgh University, the organiser of the recent ADHD conference and co-author of Critical New Perspectives on ADHD describes this view as "terrifying".
She suggests that an ADHD diagnosis is being too widely given for a diverse range of conditions.
She says: "We need to understand that there are a wide range of factors that could explain children's difficulties."
Children's lack of attention could be explained, she says, by "the context of a rapidly changing world, a culture where constantly moving images and sound bombard children; where what we expect of children in school has changed, with less physical activity and more pressure for formal attainment; where children's behaviour can be affected by what they eat; changing family structures and longer working days for parents; some parents who neglect their children perhaps as a result of misuse of alcohol and other substances and growing social and economic inequality."
Dr Lloyd questions the baseline of 5% of children worldwide having ADHD which is sourced from the Diagnostic and Statistical Manual of Mental Disorders.
In fact, the manual's author, Robert Spitzer, professor of psychiatry at Columbia University, is reported to have recanted on many of these classifications as leading to mistaken medical diagnosis.
Dr Lloyd raises further concerns about medicating children during critical phases of brain development. She says: "Even if in the short term it could be shown to work', there could be very worrying long-term consequences. ADHD medication is part of a multi-billion dollar business that is encouraged in the US by the existence of private healthcare."
The use of medicine to treat and control ADHD is always contentious. While the drug works for some children, other parents report side effects, including loss of appetite, sleeping problems and, in the most extreme cases, aggression and violence.
Dr Steer says this is unreliable: "One has to look at research level and not just anecdotal evidence. In my experience there is a tiny minority who have any side effects. That does not mean that medicine should be damned out of existence because of a vocal minority."
In his own practice, he questions whether patients are taking their medication correctly and if symptoms continue, resorts to modifying the dose, reducing it or trying another drug. He adds: "We also offer non-stimulant drugs for parents who worry about amphetamines."
A voluntary organisation for parents and children affected by ADHD, Attention Fife, has concerns about the "medicalisation" of their children's problems. The charity has dealt with hundreds of affected families over the last 12 years.
However, none were willing to be named. A spokesperson for the group says: "We believe that there are many causes of these difficulties and it is too easy and potentially very damaging to give a blanket diagnosis of ADHD without attempting to treat the root causes."
Attention Fife wishes to see more emphasis on other factors influencing behaviour, including poor nutrition and immune systems, bad reactions to early vaccinations, allergies, food intolerances and their claim that many children have been on repeated prescriptions for antibiotics and inhalers since infancy.
The spokesperson adds: "The information parents are given on ADHD is from a very narrow medical focus."
Bryan Kirkaldy, senior manager in educational services in Fife and joint chair of the region's ADHD strategy board, says some of these concerns have already been taken on board. Alarmed by the region's high levels of ADHD diagnosis, the council has piloted the Levenmouth Project to diagnose and treat children with ADHD, which they hope to roll out across the region later this year.
This new multi-agency scheme involves an educational psychologist, the school or nursery, a clinician, a community-based paediatrician and nutritionist, where appropriate. Kirkaldy explains: "That way we have more tools in the box in helping children, rather than the purely medical approach."
The Levenmouth Project is also welcomed by Dr Steer, who in the 2001 SIGN Guidelines called for "an individual package of care for each child", with GPs, pharmacists, psychiatrists, teachers and social workers working together. He said: "I welcome the idea of having professionals under one building with the senior clinician still in charge. Medicine is not a stand-alone treatment for ADHD."
Equally, Attention Fife hope the Levenmouth Project will offer an opportunity for children to undergo a full range of testing and therapeutic options, as they feel a greater awareness of the children's needs is required. Their spokesperson said: "There needs to be a major mindset change to nurture and repair the damage, which we see on an almost daily basis, and to restore hope for the future wellbeing of some of our most vulnerable children."
While professionals and parents are largely united in their support for the new approach, it seems that the criteria for diagnosing ADHD and its controversial medicine-based treatment will remain unresolved until the Scottish review of the medical guidelines for diagnosing and treating ADHD is published in 2008.