Epilepsy in England: time for change

14 January 2009 

A report launched today by Epilepsy Action has revealed that epilepsy is a worryingly low priority for England's health service providers. This is despite several previous reports highlighting the need to improve the poor state of services.

Epilepsy in England: time for change reports on the results of a survey of health trusts in England and a survey of people with epilepsy. The results of the surveys have revealed a deeply concerning variation in the provision of epilepsy services. They have also revealed serious variations in the collection of information and the quality of care for the 382,000 people with epilepsy in England. In countless areas of England, epilepsy services are unacceptable.

Epilepsy Action’s President, Baroness Ford of Cunninghame, launched the report at an event at the House of Commons, which was attended by Members of Parliament (MPs), Members of the House of Lords, health trusts, key organisations, and people with epilepsy.

Baroness Ford said: "What the report reveals about the state of epilepsy services in this country is astonishing. It shows that health trusts are unlikely to be able to provide decent epilepsy services, when they don't have many of the resources underlined as critical in the 2008 NICE commissioning guide.

"It's time for health commissioners to start implementing NICE guidelines; it's time for the government to wake up and take the lead on this issue; it's time for people with epilepsy to stop getting such a raw deal."

The findings: epilepsy services are unacceptable

In early 2008, Epilepsy Action sent out surveys to all primary care trusts (PCTs) and acute trusts in England. The surveys asked a number of questions about the existing epilepsy services in each trust. Alongside this, a survey was also sent to people with epilepsy to find out their experiences of services. The full survey questions and a detailed breakdown of results can be found here:

• Sue Ryder Care report
• Responses from primary care trusts can be viewed here
• Responses from acute trusts can be viewed here
• Responses received after the deadline can be viewed here
  [MS Excel spreadsheets, Excel viewing software is available from the Microsoft website]
• Epilepsy in England: time for change report

The results of the survey show that many of the recommendations set out by good practice guidelines are still not being met. The National Institute for Health and Clinical Excellence has developed guidelines for the treatment and management of epilepsy. The survey results revealed that many of the trusts are not meeting the recommendations made by NICE. Particular problems include:

• access to specialists in epilepsy (consultants and/or specialist nurses)
• waiting times for a first appointment
• access to diagnostic tests
• the lack of care plans and transition services.

The report exposes a bleak picture for people with epilepsy. Key findings include:

• Despite NICE guidelines that all people with suspected epilepsy should be seen by an epilepsy specialist, half (49 per cent) of acute trusts do not employ one.
• Despite NICE guidelines stating that all people with suspected epilepsy should be seen urgently (within two weeks), most trusts (more than 90 per cent) have waiting lists of longer than this.
• Despite NICE guidelines stating epilepsy specialist nurses (ESNs) should be an integral part of the medical team providing care to people with epilepsy, well over half of acute trusts (60 per cent) and of PCTs (64 per cent) do not have one.

The report also found that the majority of trusts lack even the most basic information to allow them to design adequate services. It was found that many trusts do not hold basic data on the prevalence of epilepsy and the number of people with the condition in their region. Only 18 per cent of PCTs provided figures on the number of children with epilepsy. Without this vital information, it's impossible to see how trusts are able to plan and provide services of an acceptable standard.

Time for change

Taken together, the facts from the surveys paint a picture of poor service provision. Epilepsy appears to be a forgotten condition, where patients are falling through the cracks in the system. The surveys of PCTs and acute trusts highlighted a disturbingly low level of knowledge about the epilepsy services they are currently providing
and should be providing.

Epilepsy Action is now calling for the government to show leadership by driving improvement in epilepsy services. Epilepsy in England: time for change sets out a ten point plan for the government and policy makers to address the shortfalls in the provision of epilepsy services. The 10 recommendations are:

• Appoint a National Clinical Director for epilepsy to review service provision in England and lead change.
• Define in the NHS constitution a patient right to health care to the standards outlined in NICE clinical guidelines.
• Ensure local commissioners carry out a formal review of their implementation of the NICE epilepsy guidelines and develop plans to ensure these are met.
• Ensure that NHS workforce planning focuses on the recruitment and training of sufficient epilepsy specialist consultants and epilepsy specialist nurses to allow PCTs and Acute trusts to deliver the NICE guidelines.
• Ensure that PCTs build a clearer picture of the epilepsy population in their area, especially the under 18s, and factor this into their review.
• Commit to ensuring that all patients with suspected epilepsy see an epilepsy specialist consultant within two weeks.
• Ensure all acute trusts have adequate diagnostic equipment in line with the patient population they serve.
• Ensure all patients receive an annual review of their epilepsy.
• Ensure transition services for children moving in to adult epilepsy services are in place and effective.
• Ensure all patients with epilepsy who want a comprehensive care plan have one.

What can I do to help?

We would really value your help in encouraging the government and health trusts to make the necessary changes to help improve services for people with epilepsy. The more people who are involved in the campaign the better.

There are a number of ways in which you can support us:

• Write to your local PCT and acute trust to make them aware of the report findings and ask whether they will implement the recommendations.

You can find the name and contact details of your local PCT and acute trust through the NHS Choices website http://www.nhs.uk/

To find the details:

• Select the “find services” option on the website
• Select the “find your local primary care trust” or “find other kinds of trust” option and enter details of where you live.

Alternatively, please contact Pete Scott through the contact details below.

• Write to your local Member of Parliament (MP) to ask them to contact your local PCT and acute trust.

• Ask your MP to sign the early day motion in support of the report and campaign

Members of Parliament (MPs) can be a powerful influence on those making local decisions. In your letter you may want to include information about the Epilepsy in England: time for change report, your concerns about epilepsy services in England, and any examples of your personal experience of epilepsy services.

An early day motion (EDM) has been presented to MPs, calling for the government and health trusts to take steps to improve epilepsy services through the recommended changes in the report. An EDM is a statement that MPs can sign to show their support for an issue. When you write to your MP, ask them, if they haven't already done so, to sign EDM 441.

You can instantly contact your MP by email through writetothem.com.

The House of Commons website can tell you who your local MP is and give you more information on how to contact them. If you don’t have internet access your local reference library can you the MPs details.

• Take part in National Epilepsy Week (18-23 May)

Epilepsy Action is using this week to keep up the pressure on politicians to improve epilepsy services across the United Kingdom. Please visit the webpage to find out how you can take part and help to improve services.

If you would like further information about the report, Epilepsy in England: time for change, please contact Pete Scott, Epilepsy Action’s campaigns and policy officer, on 0113 210 8800.

For journalists' enquiries only, please contact Aimee Bowen on 0113 210 8800 or email press@epilepsy.org.uk

• Epilepsy in England: time for change report
• Press release