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INTERAGENCY THINKING ON ADHD

(Attention Deficit Hyperactivity Disorder)

By Nick Child

In the mid-1990s, our Motherwell CFC Team convened a series of discussions with representatives of various relevant agencies in our patch to consider the best way forward on the burgeoning business of ADHD. This is part of the result, some notes for professionals and others interested. This 4th version was published as part of 'How true story-telling lost its place' in CONTEXT (Autumn 1996), 28, pp34-37. We now use a later paper of Hill and Cameron (1999, Recognising Hyperactivity: A Guide for the Cautious Clinician. Child Psychology and Psychiatry, 4, pp50-60). And there is a mountain of further publication since then. But the logic still holds. In Lanarkshire we are (in 2000) repeating the process at a wider and higher level resulting in the Lanarkshire ADHD Guidelines and Rationale. Meanwhile, the SIGN Guidelines came out in 2001, and later that year I gave a paper on Child Psychiatry's Attention Deficit and Inevitable Overactivity and Disorder. A useful notion is that ADHD can be such an inclusive category requiring very similar answers, that it is a large way toward being equivalent to 'child and adolescent mental health problems' in general! Then you start talking about good practices for all CAMHS. See also parental Tips & Tactics for Managing "ADHD"

Originating in North America, there has been a powerful media-driven campaign to publicise AD/HD (Attention Deficit / Hyperactivity Disorder). This challenges the present British approach and treatment, highlighting in particular the relative infrequency of diagnosis and pharmacological treatment, usually with Methylphenidate ("Ritalin"). Media descriptions of AD/HD convince parents that it's their child 'to a T', leading to their pressure for diagnosis and cure by medication. Delay here is taken as a sign of the British incompetence the media leads them to expect.

The media is not the most comprehensive and balanced source of information. Even the massive professional literature on the subject is often contradictory and confusing. These guidelines aim to help create a more informed and integrated approach. Our thinking and approach is incomplete and will continue to develop and be clarified. However, simple protocols for GPs and other front-line agencies are available. These notes are for those interested further and for other agencies more involved. They have been developed by the Motherwell Child and Family Clinic (CFC) team and in inter-agency meetings with local colleagues in paediatrics, educational psychology, community medicine, social work, managers and purchasers. Lanarkshire has not yet produced the worst expected 'epidemic'. But there has been a jump in rate of referral of hyperactivity and prescription of Ritalin, and it seems unlikely that this is a passing phase.

The issue of AD/HD needs a positive approach. Where appropriate, we need to assess and work to establish a secure enough alliance between parents and professionals in order to consider what 'multi-modal' help to offer, including medication where appropriate. In this as in all complex child and family problems, integrated interagency collaboration is important (see above). The aim is to provide services locally within present resources, while aware of the influence and availability of services in neighbouring (or distant) areas. Since there are significant issues, consequences and skills to take on board, it would be best for those actively working with AD/HD children and their parents to be involved and informed by the local interagency liaison group and the guidelines they produce. No doctor should diagnose AD/HD or prescribe Ritalin without that guidance.

What is good practice for AD/HD is largely good practice for any child and family mental health problem, including multi-factorial assessment, multi-disciplinary teamwork, and multi-agency liaison. Most of the thinking in this document applies to any complex child and family problem. AD/HD highlights the need to maximise the normal patterns of inter-agency referral and collaboration. If present low demand continues, GPs and other referrers should continue to follow present referral patterns (see CFC 'Information for Professionals', for example). For referrals to CFC, CFC will assess priority for AD/HD cases according to the usual other indicators of concern (risk of harm, family or school breakdown, serious disruption of development, & quality of support).

· It is important to counteract the media view by confirming with families that the various agencies involved are positively prepared to assess for AD/HD and prescribe medication where appropriate, but that this requires the usual proper assessment of all aspects of the situation - educational, medical / developmental, family, and personal. This is not emphasised in the media - check lists and brain scans are not as all-important as TV makes out.

· Disguised in the questionnaires used, are the key items for AD/HD. They elicit high levels of activity, restlessness, and distractibility, swinging moods, impulsivity, and destructiveness. All these features are also seen in common explicable emotional and conduct disorders of children.

· Families should be encouraged to work with local services rather than seek more special services they may have heard about elsewhere. Point out that the problem presents in various settings and that local agencies are better placed to respond to this.

· Diagnosis and medication (on its own) is not as simple or curative as the media suggests, and (as is general good practice for all complex problems) everyone agrees that management of AD/HD also needs to include various kinds of help, such as helping children, parents, and teachers in managing their behaviour.

· Frontline agencies should not refer families to other agencies before trying their usual discussion and guidance with parents and others in straightforward assessment, advice and help with their child's problems (eg see David Steare's "ADHD" Tips & Tactics - the list of behaviours given by the media as diagnostic of AD/HD is very similar to a list of behaviours characteristic of all lively children!

· GPs are advised not to prescribe Ritalin without referral to, assessment by, and guidance from, other agencies such as paediatricians, CMOs, CFC, and in liaison with educational psychologists.

SOME BACKGROUND ISSUES

Ideus (1995) gives a much needed cultural perspective on the origins of the AD/HD 'epidemic', highlighting the specially North American values of individualism, conformity, competitiveness, and medical and insurance marketisation that feed the campaign there to establish and fund the labelling and special treatment and education of the huge number of diagnosed children. Ethical questions arise when the label is not just a temporary one, but liable to continue for life, as with other disabilities, with the social, personal and economic consequences of such labelling and the invalidation of the individual.

Increasingly we live in a culture where an idealised view of family life and child-rearing is promoted, along with the idea that there is a therapy (medical or psychological) for any and every difficulty in life. It is natural for parents to worry intensely over any possible illness or disability in their children, and to try to find ever more caring ways of dealing with them. In general, but also when parents have felt concerned, frustrated and defeated in getting attuned with their child, it is increasingly difficult for caring parents to ignore or deal with their problems in other seemingly less caring ways. AD/HD (as presented in the media) is similar enough to what many normal children are like, and neatly fuses the psychological and medical, to provide a powerful hook to hang all this on. Thus, Ritalin may seem a last chance for caring parents to retain hope of a caring solution.

The assessment and management of AD/HD clearly requires interagency cooperation. If the epidemic grows and there is no interagency framework to responding, there could be major resource implications for choice, quality, quantity and funding of services. Specialist agencies in different areas cost very different rates. Where it may have been clear before, without any special assessment, that a child behaving in a difficult or out of control way arose from family or childcare factors, the AD/HD media campaign can lead to a demand for specialist assessment before more ordinary steps are tried. Families can increasingly obtain services and financial benefits specifically for 'hyperactivity disorders'.

As anyone who has looked through a medical book will know, reading a description readily induces a state of belief that one has that condition! The popular unscored behaviour list is in fact a checklist of ordinary childhood problems, not (as some take it to be) a list of features of AD/HD. Parents and others will fill in the questions with their own bias anyway, unless there is a genuine collaboration between professionals and families. For DSM or ICD classifications, there are tighter and exclusive requirements to any of the actual classificatory systems before the labels are valid. ICD and DSM are explicitly descriptions only, supposedly not identifying causes (biological, psychological and social). But a medical-shaped diagnostic system unavoidably focuses on the individual and predicates a medical individualistic result. This fits with the family's desperation and the media's presentation, often closing off wider kinds of discussion.

There is a simple explanation for the relative infrequency of diagnosing in the UK. AD/HD terminology belongs to the DSM diagnostic system used in the USA, where the UK uses the tighter ICD classification for Hyperactivity Disorder (HD). For example, ICD requires (where DSM doesn't) that the child's concerning behaviour occurs across settings - school, home and clinic. This difference gives a prevalence figure of up to 17% AD/HD compared with 0.5-1% HD. It is the attraction of a curative pill that has swung public and psychiatric diagnosis toward AD/HD and away from other categories (eg conduct disorder etc).

Lots of environmental, social and personal actions cause physiological (ie brain scannable) changes and subjective consequences thereof (eg exercise, relaxation, anorexia nervosa, taking coffee, alcohol or drugs). So the discovery of neurotransmitter changes and abnormal scans etc does not necessarily confirm a medical disorder, or mean that that is where intervention has to be. However, it follows that intervention at a pharmacological (or other drug or physical) point in the bio-psycho-social system may bring changes, just as other kinds of intervention can. The question is which point or points in the multifactorial system are best chosen for intervention.

It is our view, as in all our work and for a range of reasons, that, if possible, especially where children are concerned, it is better to find other ways of helping behavioural problems than medication.

But, since anything that can go biologically wrong in the body does go wrong, it would not be surprising that some children have a deficiency of dopamine production (or whatever) in certain areas of the brain and that this is a primary factor in producing the characteristic poor concentration, impulsiveness, hyperactivity and poor motivation. Note though that all these are only problems because of modern socially given expectations (eg in schools) for children to sit still and study well (see 'Cultural Considerations', above). However, there are clear examples of dramatic improvement for some very disturbed children when prescribed Ritalin. This doesn't cure the condition, but provides 'a window' for children to enjoy and progress better in their lives - rather like a depressed or anxious adult might be prescribed psychotropic medication to help the person's mood while working on the psycho-social issues that are the main causative factors.

AD/HD is not the first psychiatric disorder to find confusion in the problem of genetics or genesis. It is common, as well as researched, knowledge that some temperamental characteristics are inborn if not inbred. Simple evidence that something 'runs in families' can be used to prove both nature and nurture! In clinical practice, whatever proportion of a problem may be in the blood, the task is to collaborate with and help families, not blame them. While history needs to be heard, past blame for genes or upbringing tends not to help; jointly planning the future responsibility of what to do, does help.

The dangers of labelling and medically treating difficult behaviour include the risk (in some cases) of ignoring and invalidating a child's only mode of (unconscious) protest and cry for help where they have reason to 'take strike action' about family and environmental stress. It is important as a priority to take adequate time to attend to any potential meaning of the child's communication through their behaviour, rather than first diagnosing (as AD/HD or anything else) and treating with medication. Taking the extreme of child abuse, we know we need first to take the child seriously and only later to consider alternative explanations for problems. Parental desparation is usually caring in origin, but sometimes the concern serves to avoid disclosure of more dangerous underlying factors. A child with other sources of disturbance may not have these physiologically suppressed by medication itself, but the message given by prescribing would tend to invalidate and suppress the child's readiness to communicate them.

Nearly all sources (even the campaigning groups' information sheets) emphasise comprehensive assessment of all factors and multimodal treatments for AD/HD. They all mention careful planning of school and home management, individual and family advice and work of various kinds. None suggest that medication on its own is sufficient. If the different agencies and disciplines can collaborate well enough in carrying out their normal parts of this multi-modal management, then there should be no need for any more specialist clinic for AD/HD.

The full assessment process also enables the establishment of an integrated team (professionals and family) around and with the child. This is also essential to provide a setting for reliable monitoring of the potential different reactions and side effects where medication is started and continued. So, this needs to be attended to before beginning pharmacological treatment. Although some of the concerns about prescribing an amphetamine-like drug have lessened now, there is anecdotal and research evidence that it is not always a straightforward or successful course. It is said not to be addictive, but treatment (it is stated) may need to be childhood-long, if not life-long. In the US Ritalin is traded with other drugs on the street. At present, even the most thoroughly scientific assessment does not reliably identify children who will specially benefit from medication. So the decision to prescribe is ultimately an empirical one.

Most often we find that successful collaborative work with the family means that the problem is no longer there to need the pills that were first thought necessary. Unfortunately this more satisfactory kind of work and result is not so impressive or easy to explain, nor so 'sound-bite-' or media-worthy.

An interagency group meets and liaises locally in Lanarkshire. These guidelines (which will be progressively revised) represent the collected views and recommendations of this group. Anyone more involved or interested in learning more should contact CFC Motherwell (49 Airbles Road, ML1 2TJ; 01698-254551) for further information. Protocols are available for basic information for GPs and other front-line agencies. This summary provides some more general background discussion. Community Medical Officers, Paediatricians, and Educational Psychologists, as well as interested Social Workers, should be acquainted with the full pack of further information, minutes of interagency meetings, key references, questionnaires, and guidelines (including pharmacological details). Key people in each professional grouping should be more actively involved in the inter-agency discussion group and become knowledgeable and skilful within the scope of selected references given.

PACK FOR PROFESSIONALS WITH A SPECIAL INTEREST OR RESPONSIBILITY

Those professionals who have a special interest or responsibility within the local multi-agency group that is coordinating the local response to AD/HD, should have made contact with CFC Motherwell (01698-254551) if they haven't already been involved in the meetings. They should have:

1. The full 5 pages of these guidelines.

2. The minutes of inter-agency meetings held so far.

3. A copy of Cameron and Hill's paper.
· Note that most of what is described in this key paper is good ordinary multi-disciplinary assessment and practice for any complex child and family mental health or any other problem. It is not entirely a special approach to AD/HD.
· Note that Ritalin requires no more (and no less) specific knowledge and skill to prescribe and monitor than many other commonly prescribed drugs and that this is potentially the domain of any medic to supervise; it is the complexities of assessing and integrating the multifactorial and multi-agency approach that requires the special skills of those agencies usually involved in that aspect.
· Note that hi-tech investigation (brain scan) does not resolve the diagnosis reliably, so that 'multi-modal' management with or without prescription of medication needs to be worked out in each individual case and by thoughtful empirical trying out.

4. The Conners Parent and Teacher Questionnaires.
· Note that these are largely general questions about child behaviour problems or 'psychiatric disorders' of many kinds, contrary to the media portrayal that it all counts toward AD/HD.
· There are a couple of inconsistencies between the two questionnaire rating instructions and the Cameron and Hill paper! Their attention must have wandered when they were writing them!
· Tell us if you understand the instructions for the teacher's questionnaire! That is, ignore them.
· Remember not to give the parents the instructions for calculating the score!
· The simple clinically used score is calculated from questions 4/6, 7/13, 11/1, 13/5, 14/21(?18), 25/8, 31/7, 33/16, 37/3, 38/14. Together these form the brief version of the questionnaire (see p5 of these guidelines) - some of the questions seem to be asking the same thing. Each is scored 0, 1, 2 or 3.
· A total of 22 (Cameron and Hill) is a 'fair marker of clinical hyperactivity' and for diagnosis and prescribing Ritalin. Conners gives 15 as the significant scoring level.
· It is worth remembering or using the brief version (see p5) for both parents and teachers when interviewing families or phoning teachers, and especially if you are using it to follow progress.

5. St George's AD/HD Clinic Guidelines, and the CIBA medical notes about prescribing Methylphenidate. These are particularly for doctors who are prescribing and monitoring medication.

MARY CAMERON & PETER HILL (1996) Hyperkinetic disorder: assessment and treatment. Advances in Psychiatric Treatment, 2, 94-102

PAUL COOPER & KATHERINE IDEUS (1995) Attention deficit hyperactivity disorder: Trojan horse or gift horse? and:

KATHERINE IDEUS (1995) Cultural foundations of AD/HD: a sociological analysis. Both in:

PAUL COOPER & KATHERINE IDEUS (eds) (1995) Attention Deficit Hyperactivity Disorder: Educational, Medical and Cultural Issues. Published by Association of Workers for Children with Emotional and Behavioural Difficulties. (Copies available for £6 + £1p&p from: Alan Rimmer, Charlton Court, East Sutton, Near Maidstone, Kent ME17 3DQ - same address for next two articles, available for £3)

KATHERINE IDEUS & PAUL COOPER (1995) Chemical cosh or therapeutic tool? Towards a balanced view of the use of stimulant medication with children diagnosed with AD/HD. Therapeutic Care and Education, 4, 52-63.

ROBERT DETWEILER, ANDREW HICKS & MACK HICKS (1995) The multi-modal diagnosis and treatment of AD/HD. Therapeutic Care and Education, 4, 4-9. (Illustrating how impossibly idealistic some approaches can be, though useful ideas here for how the class room structure can be improved.)

AD/HD FAMILY SUPPORT GROUP. Find out what families get from the self-support organisations. Full sets of information sheets on all aspects from: Mrs G Mead, 1a The High Street, Dilton Marsh, Nr WESTBURY, Wilts BA13 4DL (01373-826045).

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