22 January 2013
Today Epilepsy Action has launched its new report, A Critical Time for epilepsy in England. The report shows that epilepsy health services in England are not good enough and vary in many areas. It also shows that many of the new organisations responsible for NHS services are not considering epilepsy in their plans for the future.
Epilepsy Action’s Vice President, Laura Sandys MP, will later formally launch the report at a reception in the House of Commons. Members of Parliament, Members of the House of Lords, key organisations and people with epilepsy will all be in attendance to hear the findings of the report, and Epilepsy Action’s recommendations to improve services.
Last year we conducted four surveys around health services for people with epilepsy in England. We believe this makes up the most comprehensive study of epilepsy services ever carried out in the UK. These surveys were of:
- People with epilepsy.
- Acute trusts (hospitals and Foundation trusts that provide services).
- Primary care trusts, primary care trust clusters and newly forming clinical commissioning groups (who provide and buy health services for people).
- Local authorities, who will soon have a role in deciding local health priorities.
The results from these surveys showed that the services provided at the moment are not good enough.
We found that the services currently being provided are not meeting the needs of people with epilepsy. These results mirror similar findings uncovered by Epilepsy Action’s 2009 report, Epilepsy in England: time for change. Just as then, we have found that access to specialists can depend upon where you live. In some places the basic elements of an epilepsy service, such as an epilepsy specialist nurse, are missing.
We also found that not enough is being done to plan for better services once changes to the NHS, planned for April, have taken place. Although we surveyed the organisations during the big NHS changes, it was clear that epilepsy was not featuring in plans as it should have been. This leaves us concerned that there are no plans to address these gaps over the next few years.
Our report carries 10 recommendations that we believe, if carried out, would significantly improve epilepsy services. They include:
- Each clinical commissioning group agreeing to carry out an assessment of the needs of their patients with epilepsy.
- All clinicians to make sure their patients with epilepsy have been offered a care plan, and to help them create one if they haven’t.
- Members of Parliament to follow up this report with their local health trusts to see that they make plans to address the problems we’ve identified.
- The Health Select Committee in Parliament to conduct a first ever inquiry into epilepsy services. This would hopefully lead to an action plan to address any problems that the Committee identifies.
- To see all our Recommendations in full, please read our full report.
Copies of the report
This report is aimed at clinicians, health service commissioners and elected officials. However anyone can download a copy.
If you are a clinician or a commissioner, or you are campaigning with us, you can get a free hard copy of this report. To do this, please get in touch with us using the details at the bottom of this page.
Read the professional journal article
An article about the research that was carried out to support this campaign was published in Seizure: European Journal of Epilepsy. In the article the authors, Dr Jon M Dickson, Peter Scott and Professor Markus Reuber discuss the survey findings and explain that:
- The quality of epilepsy care in the NHS in England is excellent in some areas.
- The quality of epilepsy care in the NHS in England varies and many areas offer poor care that doesn’t deliver the level of car contained in NICE guidelines.
- Generally speaking, there has been little improvement in epilepsy care in recent years.
Read an abstract, or download the full article: