Thanet ADDers Newsletter
Volume 3, Number 3, March 2000
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.
Kid in the Corner
This was a three-part drama produced by Tiger Aspects about a child with ADHD. What a fantastic portrayal of a family living with a child who has ADHD. This drama depicted life with Danny (Eric Byrne) prior to learning about ADHD. The program showed in graphic detail, the difficulties faced by the whole family. The accusations of bad parenting, the hurt suffered by parents, child sufferer and siblings. The pain and humiliation dished out by the so called professionals both medical and educational, showed how disheartening and frustrating it is to know that something is wrong with your child and no one believes what you are saying. Also how destructive others behaviour towards the sufferer is, how harmful to the child's self esteem.
Fantastic and sensitive performances by Douglas Henshell (Dad), Clare Holman (Mum) and Eric Byrne (Danny) made it seem even more real.
Dr Kewley was an advisor along with Andrea Bilbow from ADD Information Services. Thanet ADDers was involved in the research and the first episode was apparently based around our own Richard.
Caroline is still waiting for an appointment at the Maudsley Hospital ADHD Clinic for a formal diagnosis of ADD. It is saddening to find how long we still have to wait for help for adults via the NHS. If we can afford to go for private assessments then there are some very experienced and well respected doctors who can be approached and are willing to see us within a few weeks and carry out very stringent and in depth assessments leading to formal diagnosis and treatment which can be monitored by GPs.
For those children approaching 16 we have been informed that they will continue to receive care under the current provision for a couple of years until they formally have to leave the paediatric services.
We have spoken to Roger Gale MP and he has made enquiries on our behalf to the relevant agencies and we will keep you informed.
Meetings for Parents
Again we have decided to suspend these meeting due to lack of support. If anyone would like to set up meetings where parents can get together on a regular basis please contact us and we will give our full support.
It is with regret that we have to inform you that we have made the decision to quit the Advisory Committee of the new UK Alliance of Support Groups.
As one of the founding groups, we decided to split from the committee set up to steer the new body forward as we felt that this was going in the wrong direction.
, co-founder of Thanet ADDers and its spokesperson on the Alliance Committee said, "It upsets me to think that Contact a Family, the charity, I, Kathy West and Ben Leete asked to help us set up this new Alliance in the UK 3 years ago has let us down so badly. They have railroaded the whole process and taken all control out of the hands of the very people who should be benefiting from it."
"We approached CaF to help us and initially everything seemed to be going fine. They were a great help in obtaining a grant of over £97,000 from the Dept., of Health for a Project Worker to help co-ordinate all the groups up and down the country. Meetings were held and it was decided a steering group made up of representatives from each area of the country would have a say in the appointment. Without notice CaF went ahead with employing someone who did not have a great in depth knowledge of AD/HD."
"We weren't particularly happy but decided to give the new worker, Mr. Jim Hedgeland a chance. After all, the support groups themselves don't have access to a penny of the £97,000 grant, CaF have total control."
"However, we in Thanet saw very little evidence of what this new Project Worker was actually doing and further problems followed including the banning from the CaF offices of a very hard working protagonist for AD/HD, Bob Breen, for apparently being rude to a CaF member of staff. We don't believe Bob was rude but what worries me is that this is supposed to be an Alliance of groups dealing with ADHD and many members are quite likely going to be adult sufferers, who are impulsive, often outspoken, blurting things out without thinking. Who else will be barred from membership? If they take on the handling of a group say for sufferers of Epilepsy are they going to ban people who have an epileptic fit?"
"The last straw for us was the new Project Worker, taking it upon himself to write to a BBC researcher, and apparently claiming to be the national spokesperson for all groups around the country signing himself the "ADHD National Co-ordinator" on paper headed "The National ADHD Alliance".
More of the story can be found online at www.adders.org
This action does not preclude Thanet ADDers from actual membership of the Alliance and to this end if after what you have just read you still wish us to become members, then please contact us accordingly. If a majority of our members still wish us to join when the time comes, then we will respect your wishes. If we do not hear from you this will be taken as a "No" vote, i.e. in agreement with ourselves.
Website Hits A Million
The website for Thanet ADDers, www.adders.org has now passed the Million visitor mark since August 1998 and with nearly 4,000 visitors a day (14,000 hits/impressions per day) and growing is set to pass 2 million by the end of the year.
This level of traffic means we are now able to hopefully earn income for Thanet ADDers from advertising. We are hopeful this will enable us to provide new services such as proper printed information packs, professional leaflets for surgeries and clinics and lots more.
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