ADD/ADHD Online Information

Thanet ADDers Newsletter

Volume 4, Number 2, July 2001

Important, Please Note

This is a copy of our local group's paper newsletter sent out to members of Thanet ADDers. For our main online homepage click here for adders.org. Much will have happened since this newsletter was sent out, so check adders.org for up to date information.

Donations

We have just received a wonderful donation from The Inner Wheel of Herne Bay whose President for 2000-2001 chose Thanet ADDers as her Charity for the year. We would like to thank all the ladies for their hard work throughout the year to raise money for us. Included in the donation was an amount raised by a Gentleman who ran in the London Marathon this year, a special thanks go to him also, for completing the Marathon and for thinking of us as his charity to help.

One of our ambitions over the years has been to produce a 3 fold leaflet which can be placed in Doctors Surgeries and Clinics to inform people about AD/HD and about the Support Group. There are so many who are affected by AD/HD who have very little support and are not aware that we as a Group are here to offer this. We feel that by having leaflets in these establishments we can help reach those who need support and don't know where to turn. Obviously this costs money and up until now it has just been a dream. Now thanks to the Inner Wheel this dream can become reality and we are now getting leaflets produced and hope to distribute them to Doctors and Clinics in the Thanet and Herne Bay area shortly.

We have also just received a donation of filing cabinets, paper, envelopes and some stamps from a local group. This was arranged for us by Thanet Business Community Partnership. Our thanks go to Sheila from TBCP for organising this very kind donation.

As you are aware we have no funding to run the helpline or to send out information so this wonderful gift will be a tremendous boost. As well as the leaflets it will enable us to keep maintaining the helpline and information packs etc.

Concerta™ - Now Available In The UK

We have just heard from B R Pharma, that they are now receiving supplies of Concerta™. This will be available to people in the UK under the same conditions as Ritalin SR and ADDerall. What this means is that B R Pharma have received the licence to import the medications but they remain unlicensed as far as Doctors are concerned, i.e. they will not appear on their computer screens as medications available to prescribe. However, Concerta™ will be available to patients on a named patient basis under guidance from a consultant. If you are interested in using Concerta™ you would have to approach the consultant and make sure you can give them information about the medication and ask if they would be willing to prescribe. Due to the cost of Concerta™ B R Pharma is only importing a limited quantity which they are doing on a supply and demand basis at present. This means that if you do have a prescription for Concerta™ the Pharmacist will have to fax a photocopy of the original prescription to BR Pharma International on (UK Only) (Tel:020 8238 6770), B R Pharma who will then order from the US, this can take about 1 month for delivery. B R Pharma have told us however that as demand increases the supply will improve.

Concerta™ is an extended-release formulation of methylphenidate tablets for ADHD treatment which is designed to last throughout the day with just one dose. Methylphenidate is the most commonly prescribed medication for treating and managing ADHD. It has been used safely and successfully among children and adults for more than 25 years.

We have also been informed that B R Pharma now have supplies of Catapres (Clonidine) Patches and Melatonin in 1mg, 3mg and 5mg tablets, which I believe they supply at a cheaper cost than another company who also supply this medication.

Booklet for Children

We have recently been sent a copy of a booklet specifically for Children to help their understanding of AD/HD and the medication. This has been produced by Celltech, the makers of Equasym. Equasym is Methylphenidate and is a different generic name for the drug most commonly known as Ritalin. In the booklet there are "Time Out" cards which are designed to be used in school with teachers co-operation. If the child feels that they are having problems, rather than wait to be sent out of the class for messing around, or, just running away, they can place the "Time Out" card on the teachers desk and move themselves to a pre arranged area where they can calm down. Also by leaving the card on the desk the teacher knows what is going on. I feel that this could prove very helpful to both the child and the teachers.

We have been sent copies of the booklet and enclose one with this newsletter. Please let us have any comments you have about them i.e. if you think they are useful or not.

Celltech also produce booklets for Parents, Teachers, GPs - Practice Nurses & Health Visitors and a monitoring booklet for keeping a check on how the child is doing on or off any medication both at school and home. All these can be obtained free of charge to parents and professionals by contacting Celltech on 01753 447556. They also provide the booklets as a set to Consultants in a special pack containing 5 copies of each title.

Celltech have also produced a special tablet container for weekly storage of medications, which could be very useful for any child who has to take medication at school as it has a space for the name, medication and dosage. They have very kindly sent us samples of those which are also enclosed for our members. Again further supplies can be obtained free of charge from Celltech.

Meetings For Parents

We are still trying to sort a venue to hold meetings for parents and hope to hear shortly about this. We hope to have more news for you in the next Newsletter and maybe start meetings by the end of this year or the start of next.

We do have a number of videos and information books etc., which we are hoping to use to start these evenings off, which I am sure will be of benefit to many.

I.D. Cards

We have also included copies of leaflets produced by the Milton Keynes Support Group. This gives details of an I.D. Card for people on medication for AD/HD. These have been approved by the Primary Care Groups and need to be signed by the prescribing Doctor to confirm why the person would be carrying the medication in case of accident or any other circumstances.

The leaflet is self-explanatory and if anyone feels that they would like to know more please get in touch with us or the Milton Keynes Group direct.

Medication In School

We know that the giving of medication in school is a difficult issue, but we would like to try to compile a database of local schools who are willing to administer medication for ADHD. If you have any information about schools who are especially helpful, we would appreciate hearing from you.

The Fourth Annual ADDISS Conference "ADHD Across the Lifespan" March 26, 27, 28th 2001 Royal National Hotel, London

of Thanet ADDers attended the conference and a report of the event follows.

Day One

Over 400 delegates arrived for the first day of the fourth annual ADDISS Conference on 26th March 2001, including a large number from our European neighbours. The conference was held at the Royal National Hotel, Russell Square, London until Wednesday 28th and was entitled "ADHD Across The Life Span."

The conference started at 9:15 and delegates packed into the keynote speeches of the morning which included, "Overview of the NICE Guidelines" by Professor Eric Taylor, "Findings of the 14 Month Randomised MTA Trial: Clinical Applications, Future Research" by Peter Jensen MD and "Building Up Rather than Tearing Down: The Effective Care and Treatment of Children with ADHD" by Sam Goldstein Ph.D. These were all very well received and lots of good feedback produced.

During the course of the morning, two awards were presented by ADDISS (ADD Information Services). The first was given to Professor Eric Taylor for his outstanding contribution to research and was presented by Sam Goldstein.

The second was given to Dr. Geoffrey Kewley of the Learning Assessment Centre, for his tenacity and dedication to his work in ADHD and his support to families. This was presented by the founder of ADDISS and conference organiser Andrea Bilbow.

The afternoon session started at 1 p.m. with a number of speakers to listen to. I heard the talk by Dr.Stuart Chesner from Israel who spoke about the DAVID Treatment Plan which he has developed for use at home and school. He developed this during his work with students at the school he runs in Israel for children with ADHD and other Behavioural Difficulties. The plan and its success was remarkable and very simple to use. In actual fact I have been working with Mid Kent Education recently to help develop good practice in schools and showed them a copy at the last meeting I attended and they hope to start to use the plan in schools in the Mid Kent area. Lets see if we can have talks with East Kent to try the same.

After tea further parallel sessions were held and I attended one by Jack Crompton, a Behaviour Support Teacher in the UK - Adventures in Plumbing: The Role of the Behaviour Support Teacher. This again was very interesting and should be of use to help children in school. Again it would be great if we can get some of his ideas into use in local schools.

The main program closed at 5.30 p.m. but a special lecture by Sam Goldstein at 8.00 p.m. entitled "Current Concepts About Children's Problems: Is There Such a Thing as Attention Deficit Hyperactivity Disorder?" rounded off an extremely successful day.

Day Two

The second day at the Royal National Hotel saw another excellent attendance again of over 400 delegates. The morning keynote speeches, "The Overlaps of ADHD, DAMP and Asperger Syndrome" by Professor Christopher Gillberg, "Space, Face, Voice And Choice: The Critical Role Of Social Skills Development In Addressing The Needs Of Students With Attentional And/Or Learning Problems" by Professor Loretta Giorcelli and "Current Understandings of ADHD Across the Lifespan: Inattention and executive Function Impairments" by Professor Thomas E Brown PhD, were all very well received.

The afternoon session I attended was given by Dr Nikos Myttas from Edgware - ADHD, Substance Abuse and Criminal Behaviour, again this was so informative. Dr Myttas is a lovely guy and I look forward to a continuing dialogue with him to raise awareness to the issues he spoke about both at Local and National Level. I have been in talks with the local Probation Service and hope that they will now be able to use some of the information to help those young people who so often become their clients due to some of the impulsive and disruptive behaviours they can show and get into trouble for.

After Tea I was rather brain dead so decided to sit out on talks but I was not given any break from working as many people were talking to me about the role of adders.org on the internet and wanting to know more about the work of support groups and how they can get in touch with people.

Day 3

The final day of the conference dawned and again the attendance was very high and the programme was very full. Keynote talks for all were presented in the main area for the whole morning:

9.00 am - What Co-morbidity in ADHD means for Assessment and Treatment - Professor Peter Hill, very interesting to be able to hear what is happening at Gt. Ormond Street Hospital and the work of Professor Hill and his team. The fact that ADHD can have so many other conditions which need treatment makes it difficult for practitioners to put together a comprehensive treatment programme unless there is co-operation with all services and an individual programme is essential for each child. This just proves that it can be complex and we need to encourage more multi-agency working to get the right help for our children.

10.00am - ADHD and Youth Justice Part One Dr Geoff Kewley, Pat Greenway and Kymm Farmer.

Dr Kewley spoke about the Youth Justice System and how more is needed to be known about ADHD and how to help the young people who do indeed end up in front of the Police and the Youth Justice Service. Dr Kewley is working very hard to help raise awareness and to get more support to help those young people who have been missed during the younger years and have problems later in life.

Pat is the mother of a young man who has spent a lot of time in and out of detention for various criminal activities, he was not diagnosed as a child and has been in considerable trouble. Things are looking brighter for him and his family as he is getting help but it is not consistent. Problems arise when he has been in custody and received help through therapy and structure and is then sent home with no follow on care.

Kymm spoke about her brother, who has had similar problems, he was arrested and diagnosed before he was sentenced for the crime he committed. During this time he was on medication and was beginning to turn his life around, after his trial he was imprisoned and medication was stopped. On his release things were back to square one.

These very moving stories had the collective audience at times in tears and it shows that there is a lot to do to get services for so many. We are trying to work with all services and Government Departments to see how we can get more help for those who do end up in trouble with the law.

After Lunch there were more Parallel Sessions. Again however I was trying to pack away and was being spoken to by so many people wanting information that I was not able to attend any specific talk, I did try to go into a few of the talks to find out what was happening and all were very interesting.

Closing Session

ADHD Management - Is N.I.C.E. Nice Enough? Professor Eric Taylor, Professor Peter Hill, Dr Geoff Kewley, Professor Thomas E Brown PhD and Dr Paul Hutchins.

This was an open discussion on the NICE Report, the general feeling was that something was now starting to help with the recognition of ADHD but there was plenty of scope for more. It is hoped that when NICE review the report in a couple of years time more will be achieved. This can only be done by hard work from all in the professional services and by support groups and individuals working together to help improve services for both Children and ADDults.

The meeting ended with thanks being given to all those who contributed to make this a very informative and enjoyable 3 days and most of all to Andrea from ADDISS for all her hard work in putting the whole thing together.

The final day ended at about 5.15p.m. with the hope that much could be taken away and used both at Local level and National to help all those who live and work with ADD/ADHD and its many associated conditions.

Professor Sam Goldstein spoke on GMTV during the Conference, on their early news at 6.20 and 7.20 a.m. on school exclusions and how schools and the support agencies need to work with a variety of strategies to keep these youngsters in school. He emphasised that neither the children or parents should be blamed in any way, but that we all owed it to these young people to help them as much as possible.

We all look forward to the 5th Conference next year.

STOP PRESS:

We have just heard that the Broadcasting Standards Commission have released the following report about a complaint by Dr Geoffrey Kewley regarding the Panorama Program last year:

Panorama Complaint Partly Upheld

A complaint by leading UK ADHD specialist, Dr. Geoffrey Kewley, to the Broadcasting Standards Commission about the Panorama program "Kids On Pills" has been partly upheld. The program was broadcast on 18th April 2000 and gave a very controversial view of the prescribing of methylphenidate for ADD/ADHD in the UK.

Dr. Kewley was interviewed in the program and after its broadcast complained to the BSC about the way it was handled. The BSC partly upheld Dr. Kewley's complaint and reported the findings of their investigations

Panorama: Kids on Pills - BBC 1, 18 April 2000

The Broadcasting Standards Commission has partly upheld a complaint of unjust or unfair treatment from Dr Geoffrey Kewley about Panorama: Kids on Pills broadcast by BBC 1 on 18 April 2000. The programme examined the diagnosis and treatment of Attention Deficit Hyperactivity Disorder..

The Commission considered that the programme-makers clearly outlined the issues that they intended to cover during Dr Kewley's interview and dealt with these. It considered that the programme-makers did not misrepresent the nature and content of the programme to Dr Kewley and it found no unfairness to him in this respect.

However the excerpt from his interview used in the programme gave only a partial account of Dr Kewley's views. It did not include his view that many health care experts regard Ritalin as an effective element in the management and treatment of ADHD. Nor did it include his statements concerning the mildness of the side effects of Ritalin and the need to relate the increased use of Ritalin to the greater incidence, recognition and treatment of the condition. The effect of only giving a partial account of Dr Kewley's views could have left viewers with the impression that Dr Kewley irresponsibly prescribed Ritalin.

The Commission found unfairness to Dr Kewley in this respect.

Accordingly, the complaint was upheld in part.

We contacted Dr. Kewley and he commented as follows:

"We regard the decision as very important, particularly for sufferers of ADHD and their families. It is a victory for common sense and highlights the duty of the BBC and the media generally to provide factual - rather than emotionally-driven - information, especially as Panorama has been considered by most people in the past to be a flagship programme and thus to be factually informative. The BSC's regulations regarding complaints stipulate that one cannot complain about bias in a programme or misinformation per se. It will, however, consider complaints where it is possible to demonstrate that there was unfair treatment of a participant in the context of the programme in which they took part. I was asked - as an acknowledged expert of considerable years' experience of assessing and managing children with ADHD and related conditions - to participate in a programme on ADHD purporting to come from a" balanced and factual" perspective, apparently "looking at the argument from both sides."

In the event, the programme failed to recognise the wider societal and personal impact of ADHD and gave much less time and weight to statements by experts in the programme, such as me, Professor Jensen (who has lead the largest study on ADHD ever undertaken in the world) , who adopt an internationally recognised approach to the assessment and management of children with such problems and Prof. Taylor who has been involved in research in this area for many years.

The large amount of time given to those making ill-informed, anecdotal and unscientific statements, allowed the programme to become emotionally driven and misleading, marginalising the reality of the suffering of children with ADHD and the importance of internationally-recognised and effective treatment. This, therefore, also denigrated my research-based and clinical experience input to the programme, the combination of which prevented the viewer from appreciating the facts, significant consequences and reality of untreated ADHD to sufferers and their families.

It was an extremely long, arduous and difficult process for us with many submissions to the BSC, which took an enormous amount of time in addition to my clinical and other workload. This culminated in our being required to also attend (with the programme makers) a lengthy committee hearing before a BSC panel so that final judgement could be made. However, I felt that this effort was most important and worthwhile to try and ensure that in the future we will see much more informed and balanced reporting of ADHD so that its importance as a distressing condition of enormous societal impact can be more fully recognised and that the complications of the untreated condition are put into perspective against the pseudocontroversy about side effects of medication."

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