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Epilepsy patients deserve better care

Some 400 deaths could be avoided each year if people with epilepsy receive better treatment and care, a report suggests.

The All Party Parliamentary Group (APPG) on epilepsy report says that the government have failed to meet the needs of people living with the condition.

Despite the development of effective treatments, 69,000 people are still living with unnecessary seizures and 74,000 people are taking drugs that they do not need.

Baroness Gould, chair of the APPG, says the figures are a "national scandal".

She adds: "The waste of money in delivering inadequate service is almost as appalling as the unnecessary deaths and damage to quality of life experienced by people with epilepsy."

The APPG want the government to ensure that healthcare providers implement new guidelines and speedily increase the numbers of doctors and nurses with a special interest in epilepsy.

It says that the Health Select Committee should examine the health service provision for people with epilepsy in England.

Karen Deacon, chair of the Joint Epilepsy Council, who supported the report, says: "During the course of our inquiry it has become clear that even in the world of competing health interests the case for improving epilepsy services is overwhelming.

"Government guidelines for major changes to the treatment of epilepsy do exist, but without targets or powers, these are no more than wish-lists and of little use to patients facing critical service failures."

Epilepsy Action

Your comments: (Terms and conditions apply)

"I am probably biased, but I work as an Epilepsy Nurse Specialist and have first-hand experience of what can be achieved through service development. The area I work in had no epilepsy nurse provision and very little in the way of neurology services until 4 years ago. Patients are now diagnosed, reviewed and followed up locally with shortened waiting times" - Eileen McCubbin, Ayrshire

"My nephew is 19 & lives with me, he has been having fits since he was 12. He rang me in the middle of my morning surgery to say he had just had another fit in the middle of the road outside our house, the 5th in the last 4 days. He has now registered with a family friend, a local GP who is referring him to neurology. He has not been reviewed since he was 15. His drugs make him very sleepy & do not control his symptoms, and yet he has a full-time job in a local restaurant and is going to college in September. It is about time epilepsy was given the same status as asthma & diabetes, it can distroy a young person's life & confidence. GP practice is the best place to monitor the condition but even the GPs I work with are very nervous about epilepsy & leave it all to the hospital Drs. My nephew deserves better" - Anne Robinson ANP practice nurse West Midlands