Ј1m boost for epilepsy care

Over a million pounds will be invested in epilepsy care over the next two years, the government has announced.

The investment is part of an action plan aimed at improving services for epileptics.

But campaigners have said the plan, published on Wednesday, “will not deliver real change.” They have said there are too few doctors specialising in the condition.

Experts say at least 300,000 people have epilepsy in the UK, although estimates vary because of the difficulties of diagnosing the condition.

People with epilepsy experience recurrent seizures, of which there are over 40 different types.

The condition kills around 1,000 people each year. Around half the deaths are sudden and unexpected, usually occurring at night.

It is estimated that around 40% of deaths from epilepsy are preventable.


Around Ј1.2m will be invested over the next two years to improve access to neurology services.

One charity, the National Society for Epilepsy, will also receive Ј288,600 over three years to provide improved support and information to people with epilepsy and their families.

The plan also outlines measures to raise awareness of the condition amongst health professionals, and improve how medicines are prescribed to epileptics.

There is to be a National Institute for Clinical Excellence appraisal of anti-epilepsy drugs, resulting in guidelines in 2004.

A National Service Framework on treating long-term conditions, which will look at improving neurology services, will also be published in 2004.

And pathology and post-mortem services are to be improved so they can provide more information for bereaved families.

‘No urgency’

Health Minister, Jacqui Smith said: “I hope that this action plan will result in improved services for people with epilepsy and their families.

Chief Medical Officer for England, Sir Liam Donaldson, who called for improvements to epilepsy services two years ago, said: “I think this action plan is an important step in the process of improving awareness and understanding of sudden unexpected death in epilepsy and will lead to improved care and services for people with epilepsy.”

But campaigners say the long-awaited action plan is “unacceptable” and “insufficient” to tackle serious shortfalls identified in a national report into epilepsy care last year.

Campaigners said the action plan would not help sufferers because there was no money, no targets and “no urgency” attached to it.

Philip Lee, chief executive of Epilepsy Action said: “I don’t see how any aspect of this plan will have a meaningful or immediate impact on reducing preventable epilepsy deaths or improving the quality of care.

“How many more people in England need to die unnecessarily before serious action is taken?”

‘Preventable deaths’

He added: “People with epilepsy will continue to face poor quality care and the potentially preventable deaths will continue.

“People with epilepsy and their families deserve better.”

He said the action plan was due in August 2002, since when there had been around 153 potentially preventable deaths from epilepsy.

Mr Lee said: “It is a scandal and disgrace that people with epilepsy will continue to die unnecessarily - the government’s action plan singularly fails to address this.”

Jane Hanna, director of Epilepsy Bereaved said the action plan raised awareness of serious failings in epilepsy services, but failed to require local health organisations to take action.

She said: “It seems to rely entirely on a ‘wing and a prayer’ that local health authorities will deliver.”

Graham Faulkner, chief executive of the National Society for Epilepsy welcomed the additional funding.

He said: “Epilepsy has been the poor relation of the health service for far too long and we are pleased to see that this government action plan pledges investment of some Ј1.5-million new money to the condition.”

But he added: “While we welcome these initiatives we are disappointed that the action plan does not include any specific targets to reduce epilepsy deaths.

“It promises to engage with PCTs to urge that epilepsy is placed high on their agendas for health, but it seems unlikely that there will be any specific requirement for them to do so. Further, there any framework to ensure that they comply.”

Provided by ArmMed Media
Revision date: June 21, 2011
Last revised: by Andrew G. Epstein, M.D.