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March 2nd 2000

Copies of letters from Mr.Jim Hedgeland of Contact a Family and Thanet ADDers response.

National Alliance

170 Tottenham Court Road, London W1P 0HA. Tel: 0171 380 1261 x 247 Fax: 0171 383 0259

Lynn Railston
Frontline Scotland
BBC Scotland

29th February 2000

Dear Lynn

Further to our recent emails concerning your research for the forthcoming Panorama programme re ADHD and stimulant medication. I do get concerned about the media 'sensational' approach to the prescription of stimulant type medication as part of a treatment plan for ADHD. Too little attention may be being paid to the need for a comprehensive holistic assessment/diagnosis e.g. ICD 10 criteria (International Classification of diseases 10 edition - Geneva: World Health Organisation) and or the DSM 1V criteria (Diagnostic and statistical Manual of Mental Health Disorders, the American Psychiatric Association 1994). The ICD10 criteria is considered to be more robust.

The point I wish to make is that more emphasis should be placed upon the quality of the assessment/diagnosis as this essential to the appropriateness of prescribing any type of stimulant medication. A while ago I referred you to (and copied you on OHPs) Professor Peter Hill's presentation to the ADHD National Conference in Leeds, November 1999 i.e. A Protocol for the Assessment and Treatment of ADHD. This approach, if adopted together with supporting guidelines could provide consistency and indeed, equal access to appropriate services for children and their families.

A number of recent articles in the press have slated the use of stimulant medication in connection with ADHD e.g. The Metro 28th February 2000 "More children to get 'kiddie cocaine' drug" or the Observer article 27th February 2000 which had the headline "Mind-control drug threat for children". These types of headlines are unhelpful and biased and the content of many articles seldom deal with any real underlying issues.

You are no doubt aware that it is the experience of some parent/s that when an appropriate assessment/diagnosis has been made to establish the presence of ADHD, that prescribed medication can provide a window of opportunity for the child and family. Some families report that medication has helped their child to be able to focus and to learn for the first time.

By alleviating/reducing inattention, hyperactivity and impulsiveness children are provided with the opportunity to learn and develop and form appropriate relationships with family and peers.The difference in the behaviour of some children is reported by their family's and school staff to be astounding. But nevertheless, many parent/s would add that medication is only part of the treatment plan, and that it should be a part of a holistic multi-modal approach based on a written plan of action, in which all appropriate agencies and individuals agree to specific roles and responsibilities. In addition, that inputs and outputs are then monitored with regular periodical reviews to enable appropriate adjustments to be made to enable the child and family to progress.

I think the main points above go some way towards addressing the question often posed, does ADHD exist or not? The reality is that whatever you call the behaviour/symptoms they are very real and there is no argument about whether they exist or not from a psychiatric, psychological or an educationalist perspective.

When characteristics and behaviour do exist in the extreme and meet appropriate assessment/diagnostic criteria, prescribed medication can form a valuable part of the treatment plan. It is time to stop arguing about what to call it and get on with the most appropriate ways of how to deal with it.

The sensible way forward must incorporate:

1) better public and professional awareness of ADHD
2) earlier identification of the types of behaviour characterised by the condition ADHD
3) holistic assessment/diagnosis using agreed psychiatric, psychological and educational criteria
4) multi-agency treatment approach e.g. a written treatment plan setting out clear and achievable objectives for parent/s, child and all appropriate agencies within a reasonable time scale
5) effective monitoring and regular review of the treatment plan to improve progress.

Lynn, I do hope the forth coming 'programme' will present a sensible balance between the various arguments for and against prescribed stimulant medication for ADHD. In the above, I have tried to point out that there is a great need for agreed quality consistent services for children and their families, rather than the present somewhat patchy service provision across the country. Until this is addressed, children and their families will not have equal opportunity and equal access to an effective range of preventative and ongoing services which will benefit the individual and family and in the longer term the community and society as a whole.

I would appreciate knowing more about the content of the programme as it develops, details of when it is to be shown and whether you are making any plans or arrangements for audience response.

For information and comment I have copied this email to the Department of Health, members of the ADHD National Alliance Advisory Group and also to Contact a Family, The Henry Spink Foundation, The Hyperactivity Children's Support Group, the ADD/ADHD Family Support Group and significant others. If any of the above have information to give or points to raise about the making of the programme, I trust they will contact you.

I look forward to hearing from you. Best wishes.

Jim Hedgeland
ADHD National Co-ordinator

A parent led multi-agency approach to develop policy and improve services for children, adults and families suffering from AD(H)D (Attention Deficit Hyperactivity Disorder).

The ADHD National Alliance is a project of Contact a Family a registered charity No: 284912 and a company limited by guarantee No: 163333 Registered office: as above.

Thanet ADDers ADD/ADHD Support Group, Broadstairs, Kent.

Mr.J. Hedgeland,
Project Worker,
Contact a Family

1st March 2000

Dear Mr. Hedgeland,

We refer to your letter of 29th February to Lynn Railston, copied to us. We were unaware that you had been given a mandate to speak on our, or any other group's behalf. Had we been aware of such a mandate, we, representing Thanet ADDers, would not have agreed to it at the present time. We realise that support groups nation-wide speaking with one voice was an objective of the Alliance but only after agreement as to who the spokesperson should be. Whilst we also realise that you have some experience of ADD/ADHD now, I think you yourself would admit that your knowledge is limited in comparison to a number of other people around the Country not including ourselves. Whenever the media contact us for comment or information, we only give our opinion as founders of Thanet ADDers and if necessary point them in the direction of someone more capable of answering their questions. We certainly do not say that we are speaking as National representatives of ADD/ADHD support in this country.

Your letter to Lynn Railston, whilst broadly correct, misses entirely the condition of ADD, concentrating on ADHD. You imply in your sixth paragraph that you yourself are not certain that the condition of ADHD even exists. You even go on to say that the label of ADHD refers to the behaviour/symptoms rather than the condition itself. You go on further to say that these behaviours/symptoms are very real from a psychiatric, psychological or an educational perspective, which completely misses the point that this is an internationally recognised physical medical condition. Many psychiatrists and psychologists have been for years, refusing to admit this as a real condition citing family problems and social influences as the cause. This is something we as a group have been trying to dispel and your comments do not make this any easier. There is no doubt in our opinion that capable psychiatrists and psychologists can play an important part in helping the sufferer to come to terms with and deal with the symptoms of ADD/ADHD, but the root cause of the condition is a chemical imbalance in the brain. There are many other conditions that display the symptoms you have described but they are not necessarily ADHD and may very well be due to parental problems, social influences etc., and may well be best dealt with solely in the psychiatric arena.

ADD and ADHD are very complex conditions and careful and thorough diagnostic procedures are carried out in our area and we believe the rest of the Country, only by Consultant Paediatricians or Consultant Child Psychiatrists, not GP's.

We have for some time been unhappy at the development of the Alliance. It's original intention was not to create an alternative National body as denoted by your headed paper and job title but rather an Alliance of like minded support groups and your job as project worker rather than ADHD National Co-ordinator. The title you have adopted misses out the equally difficult condition of Attention Deficit Disorder without the hyperactive element.

This may be due to poor communication but we have also seen little evidence of the tasks you were asked to undertake e.g. to produce a National database of support groups and disseminate that information, undertake a national audit of services, produce a quarterly newsletter and produce a website, to name but a few. It's quite likely that you are in the throws of producing the above but surely a progress report on what you are doing as "our worker" as opposed to apparently self appointed leader, would be more appropriate than concentrating on talking with the media.

In the circumstances we, Thanet ADDers, wish to disassociate ourselves from the Alliance advisory committee and no longer wish to become members, should you ever get to that stage. This will no doubt not trouble you or Contact a Family, as it already seems to have been made clear that the main members should be those groups with charity status. As we do not charge a membership fee and do not actively fund raise, we took the decision not to apply for charity status at this time as we felt this would be misleading as we are not funding any project, special equipment or research. The mere fact that we have 320 members in our small area of Thanet and make over 3,000 people aware of these conditions every day through our website seems to be overlooked.

We also no longer wish to be affiliated to Contact a Family with immediate effect.

Yours sincerely,
S.E. & Mrs.C.A.Hensby

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