There's a killer on the loose claiming 900 victims a year - the majority of which are children and pensioners.

To make matters worse half of these deaths are avoidable.

I'm not talking about accidents in the home or on the roads but a condition most of us will have heard of but know little about.

Epilepsy is not a disease, it is a neurological condition for which there is no cure and in the Tees Valley alone there are an estimated 7,500 sufferers.

It is a condition shrouded by ignorance and myth.

There are 40 different kinds of epileptic seizure and in most cases it is not known what caused the condition. It can be genetic but not usually, it can affect anyone but is more likely to develop in children and pensioners.

There is a prevailing belief that everyone with epilepsy has learning difficulties when in fact this applies to less than one fifth of sufferers.

Similarly the widespread belief that flashing lights, televisions or computer screens can spark attacks is only true for 5per cent of sufferers.

I recently attended a function organised by a local support group and listened with a growing appreciation of why many sufferers and their families feel they have been neglected by the health service.

They fear funding which used to pay for a nurse specialising in childhood epilepsy has all but vanished and the loss of this resource has left 800 families feeling they have nowhere to turn.

I appreciate Primary Health Care Trusts have extremely tight budgets but I also now understand why many epilepsy sufferers and their families feel a sense of anger and frustration at their treatment - or, more accurately, lack of it.

Each year the health service devotes millions of pounds and resource hours to avoidable conditions brought about by smoking, excess alcohol and fatty foods.

Meanwhile the budget to help treat and combat epilepsy is threadbare in comparison.

And sadly there seems to be a clear knowledge gap amongst GPs when it comes to treating epilepsy.

Joanne Cole helps run an epilepsy support group and told me that the number one complaint she received was of a lack of epilepsy awareness amongst local GPs.

I was told of how one frantic mother called her GP when her son went into seizure and was advised to put tablets in his mouth.

This was the last thing she should have done. She risked her fingers being badly bitten, her son could have choked on the tablets and finally the tablets themselves could have caused severe liver damage if taken during a seizure.

Joanne told me how with good quality primary care 70per cent of patients could have seizures controlled but lack of expertise means only half achieve this.

Many sufferers have simply lost faith in their GP but because they do not make regular appointments they are recorded as "seizure free".

One thing I have learnt as a Mayor is that lobbying can work but you need as many people as possible on board.

Nationally there are an estimated 430,000 people with epilepsy and if they and their families all started banging the drum the powers that be would have no choice but to listen.

Joanne has set up an excellent support group to help sufferers and raise awareness amongst the general public and medical profession.

She can be contacted via e-mail jo.cole123@ntlworld.com

Published: 15/10/2004