Around 400 people are dying unnecessarily each year in the UK because of a "catalogue of failures" in the care and treatment of epilepsy, according to a new parliamentary report released today.
It is a "national scandal" that 69,000 people are living with seizures which could be avoided with new effective treatments, while 74,000 people are taking drugs they do not need, said the All-Party Parliamentary Group on Epilepsy.
In its report Wasted Money, Wasted Lives, the group said that the financial cost of Government failure to meet the needs of people living with the condition amounted to £189 million wasted each year.
The report, supported by the Joint Epilepsy Council of the UK and Ireland (JEC), says that people with epilepsy are being left behind by society and by a system that has consistently failed them.
Speaking ahead of the document's official publication tomorrow, the group's chair, Baroness Gould of Potternewton, said: "The regularity of avoidable deaths at nearly 400 each year is shocking. In addition, the numbers of people who experience seizures unnecessarily and the numbers taking anti-epilepsy drugs for which they have no need, demands recognition as a national scandal.
"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 report includes written and oral evidence received from patients and their families highlighting the challenges of life with epilepsy.
Karen Deacon, chair of the JEC, said: "During the course of our inquiry it has become clear that even in this 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."
The all-party group called on the Government to accept responsibility for the shortfall in services, urgently increase numbers of NHS staff with a special interest in epilepsy and ensure that health care providers implement guidelines.
And it urged the all-party House of Commons Health Committee to launch an inquiry into the provision of health services for people with epilepsy.
A Department of Health spokesman said: "The Government takes epilepsy very seriously and we will study the report's conclusions carefully.
"Funding allocation decisions are increasingly devolved to local health and social care organisations, giving them more flexibility to plan, resource and deliver local services to meet local priorities.
"In many places where local needs have been identified, nurse specialists have been appointed to address the care needs for people with epilepsy.
"The Department of Health commissioned NICE (the National Institute for Clinical Excellence) to produce the clinical guideline for the diagnosis, management and treatment of epilepsy which was published in 2004. Additionally in 2005 the national service framework for long-term conditions was published which focuses on improving services across the country for a range of neurological conditions, including epilepsy.
"The decision on how best to incorporate these arrangements into working practices must be decided at a local level, as we recognise each Primary Care Trust will have its own approach to tackling the challenge of implementing NICE guidance. In cases where evidence is brought to the Department that the local NHS is not funding NICE guidance then we will ask Strategic Health Authorities to intervene."
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