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All Party Parliamentary Group on Epilepsy inquiry

26 June 2007

Epilepsy Action welcomes the attention that the All Party Parliamentary Group (APPG) on Epilepsy has brought, through the report Wasted money, wasted lives, to the serious shortfalls in service provision for people with epilepsy. It is unacceptable that every year there are 440 avoidable deaths from epilepsy related causes in England.

The APPG on Epilepsy has completed an inquiry into the human and economic cost of the underfunding of epilepsy services in England. The APPG looked at evidence from service users, health professionals and voluntary organisations to provide a realistic picture of epilepsy services in England. This evidence highlighted the main issues caused by poor service provision. The evidence base included examples of the impact of recurrent seizures and possible drug side effects on a person's life, plus the influence of epilepsy on employment opportunities and education, as well as the social stigma.

The APPG has now released its findings in the report Wasted money, wasted lives, a hard-hitting report into the human and economic costs of epilepsy in England. The report condemns continued government failure to meet the needs of people living with the condition. The report was launched today at the Houses of Parliament at an event attended by many Members of Parliament (MPs).

Baroness Gould of Potternewton, chair of the APPG on Epilepsy, said:

“We hope this inquiry will be a significant turning point for people with epilepsy. Epilepsy is the most common serious neurological condition in the UK but service provision has been chronically underfunded and is under further pressure now in this time of cuts. The report will recommend ways in which services can be improved to help those with epilepsy better manage their condition and to live independently in the community.”

 

Current state of epilepsy services

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. Despite the development of effective treatments in recent years, 69,000 people are living with unnecessary seizures, while 74,000 people are taking drugs they do not need.

The report found that there is a serious shortage of appropriate equipment and trained staff to operate it, as well as a serious shortage of specialists. These shortfalls have seriously impacted upon the treatment of people with epilepsy. There are 990 deaths from epilepsy related causes in England, with 440 of these deaths avoidable, while £189 million is wasted every year.

The provision of services to people with epilepsy has not substantially improved despite five Government reports concluding that the provision of services for people with epilepsy is poor.

The report states: “it is about time that people with epilepsy received for the first time ever a health service that meets their needs, at least to the standard available to patients with other conditions. There is no doubt that this has not been the case to date.”

What is the solution?

The APPG is calling on the government to accept responsibility for the shortfall in services and to ensure that health care providers implement guidelines. It also urges the government to address workforce shortages by increasing the numbers of doctors and nurses with a special interest in epilepsy as a matter of urgency.

The APPG invites the Health Select Committee to drive progress by examining the provision of health services for people with epilepsy in England and look to the government to formally account for decades of under investment in this neglected condition.

The APPG recommends a number of actions that can be taken to improve epilepsy services in England. The three key recommendations are:

1. that the government urgently puts in place a programme to increase the number of neurologists and other clinicians to levels recommended by the Royal College of General Practitioners

2. that the Healthcare Commission carries out, as a matter of urgency, an Improvement Review into the state of epilepsy services to formally asses the state of epilepsy services in individual healthcare organisations and develop an action plan to improve services where these are shown to be failing people with epilepsy.

3. that the Health Select Committee considers an Inquiry into the provision of health services for people with epilepsy in England and require the government to formally account for decades of under investment in this neglected condition.

If you would like any further information about the APPG inquiry please contact our press office on 0113 210 8800 or email press@epilepsy.org.uk.

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