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A Critical Time for epilepsy in England

A Critical Time for epilepsy in England

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.

The surveys

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.

The headlines

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.

Critical time

Recommendations

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

Copies of the reportThis 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:

Download the article

Campaign with us

Epilepsy Action is making sure that all MPs, Peers, hospital trusts, clinical commissioning groups and local authorities get a copy of the report. We will be including any relevant results we have for their local area.

However we do not want the report to gather dust on a shelf, without any changes coming as a result. So we are asking our supporters to write to their new CCG and their local authority (council) to ask what actions they will be taking now that they have seen our report.

To help with this, we have made some of the key statistics for each area available on a map. There are two maps – one shows the responses from local authorities, and one which shows what health trusts told us

Maps

You can use these maps to see how your area looks, and find out what key elements are not being met.

We are then encouraging our supporters to promote our report to the service planners in your part of the country.

Below we have drafted two letters to help with this.

  • You can write to your new clinical commissioning group, to ask what plans they have to improve services for people with epilepsy.

Find the contact details of your new CCG. If you are not sure which CCG you belong to, you can contact Epilepsy Action’s campaigns team to help you find out.

You can use this template letter as a starting point to help with your own letter.

  • You can write to your local council, who will soon have new responsibilities for planning local health and social care services.

Find the contact details of your local authority.

You can use this template letter as a starting point to help with your own letter.

If you do write to your local CCG or council, tell us how you get on. This will help us to form a picture of how services are developing around England.

If you would like more information about the research or how you can campaign with us, please contact the Campaigns team by either emailing campaigns@epilepsy.org.uk or calling 0113 210 8800.

If you work for a health trust or local council, and believe we have incorrectly or inaccurately recorded you work we would be happy to receive new information and will update our records accordingly. Please get in touch with the Campaigns team by emailing campaigns@epilepsy.org.uk or calling 0113 210 8800.

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