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Articles by Dr. Billy Levin

Shared responsibility for ADHD as suggested by NICE in the UK

October 2009
©Dr. W.J. LEVIN MB ChB (Pta)

The following letter was written by Dr Billy regarding the NICE Guidelines

I have dedicated my medical practice to ADD/ADHD and the co-morbid conditions for the last 30 years. My concern locally (South Africa) is the number of referrals I get to see with a possible diagnosis of ADD/ADHD who have seen so many professionals prior to coming to see me, with little or no success. The minority are seeking help for the first time. Many often come with gross misinformation and misconceptions. World wide, in sophisticated countries the legal ruling for stimulants for ADD/ADHD is a monthly prescription written and signed by a medical doctor for a supply for one month only. This is obviously not intended to make it difficult for patient and doctor but to ensure more is done than just rewriting last month's prescription! Otherwise a few post dated scripts would suffice. The law clearly states only one months supply at a time is given!

The intention is clearly that the doctor must evaluate the progress being made and offer not only advice but make adjustments to the medication if required to do so. For the doctor to be able to do this would require of him a detailed knowledge of ADD/ADHD and an effective monitoring system to evaluate the effect of the medication. Very few GPs would qualify for this task without specialized knowledge and insight into the complicated monitoring and treating of ADD/ADHD. For that matter not too many specialists would qualify either. ADD/ADHD is a highly specialized area of medicine. Moreover very few doctors are aware of the importance of getting specific information from both teacher and parent on a regular monthly basis. In the older child, information is required from more than one teacher. Just weighing, taking the BP and pulse is no more than pulling the wool over the parent's eyes! Treating adults is often an even greater disaster. Despite ADHD in adults being not only important for the patient, it is unfortunately a much neglected field of medicine. Adults can and should be diagnosed and treated just as the child is. To obtain an optimal dose of medication, usually stimulants, requires several small adjustments, made frequently until an optimal dose is reached as suggested by rating scales and comments from all concerned. Without regular monthly feed back and rating scales this is almost impossible. Once an optimal dose is reached the child is now not only more teachable but ready to benefit from specific remedial programs. How many doctors can provide and explain these programs to the parent, to be done at home on a regular basis? Equally important is advice given about behavior problems and managing the possible side effects of the medication. This is a not a once off scenario but an ongoing program at each monthly visit.

In the shared responsibility method suggested by NICE the consultant after having seen and possibly having made a diagnosis, writes a prescription for the patient. He then hands over to an inexperienced GP who will be asked to rewrite the same prescriptions for months on end, irrespective whether the dosage is optimal or not. The GP assumes the doses are correct because after all, the consultant made the decision in the first place and the GP then continues to hand out prescriptions blindly. Sometimes he just leaves a prescription at the front desk to be collected without even seeing the patient. Yet all research clearly suggests the dosage must be titrated to an optimal dose by reevaluating the effect of medication which has no bearing on the weight or age of the patient but only on response to medication given every day on a regular basis including on week ends.

Thus it is not surprising in a small research project I did in the UK, 98% of parents were dissatisfied with their children's treatment. Only 2% of children were being monitored effectively! No consultant can reliably guess the optimal dose at the first consultation as the doses are dependant on response. To only see the patient 6 months or a year later is nothing less than medical neglect! If the intension is for the GP to liaise with the consultant when neither are experts in advising or monitoring, is doomed to failure. Clearly shared responsibility is not an ideal method of treating ADD/ADHD successfully. More insight and understanding is needed especially about the effective use of medication. Too many children are on ineffective dosages with obviously expected poor results! So many children in the UK are being excluded from school for bad behavior simply because their medication is not optimal. Even worse when uninformed teachers blame the child or the parents because they have not been fully informed by the treating doctor. The worst is when ignorant teachers give an opinion about which they know nothing about and the doctor accepts this as fact blindly.

On the website adders.orgin the UK, I often comment on parent's request for information. It is indeed a rarity for parents to be fully or accurately informed by their doctor about their children's ADD/ADHD treatment. It is even rarer, for the medical treatment to be monitored with rating scales monthly. The modus operandi is just to collect another script from the GP irrespective whether it is optimal or not. Discussing management is almost unheard of and maybe in 6 months time they might see the consultant. When asked about rating scales some will volunteer it was filled, once only at the original interview only, but no discussion about what it revealed ever took place. So often on a parent would complain that the medical treatment is not working. I would do a modified Conners rating scale via the internet and be able to tell her she should suggest to her doctor the dose needs a revision of the treatment on a trial basis. When the treating doctor was willing to co-operate a change for the better could be seen within days.

If this is a fair representation of the standard of diagnosis and treatment in the UK, it is possibly in need of urgent revision. Equally alarming is how long it takes a parent to get her child to be seen by a consultant for the first time for ADD/ADHD. Sometimes years! It is like an obstacle race to get over the many unnecessary hurdles like school opinions, nurses, psychologists and occupational therapists. As a medical neurological condition it appears the GP is the second last hurdle before he eventually condescends to send the child to a consultant. This eventually results in desperate parents and neglected children. Hopefully I have not been too harsh in my evaluating the situation but I am a concerned doctor.

Dr.W.J. Levin 3 /10/ 2009

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