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Epilepsy in England: time for change – full survey results

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 survey revealed a deeply concerning variation in the provision of epilepsy services, the collection of information, and quality of care for the 382,000 people with epilepsy in England. In countless areas of England, epilepsy services are unacceptable.

QuoteSurvey of health trusts

Epilepsy Action developed two surveys – one for acute trusts and one for primary care trusts (PCTs). Sue Ryder Care, a leading healthcare charity, was commissioned to conduct the surveys between April-October 2008.

The acute trust survey included 10 questions about the number of appropriate healthcare professionals, number of neurology/epilepsy clinics, availability of transition services, equipment availability, provision of care plans and number of patients referred from accident and emergency.

Similarly, the PCT survey consisted of 12 questions about population statistics, provision of transition service, waiting times, details of which healthcare professionals provide epilepsy services and how treatment reviews are conducted.
During the period 30 June to 2 July 2008, Sue Ryder Care sent out surveys to 170 acute trusts and 152 PCTs. These were addressed to the chief executive of each organisation. A deadline of 8 August 2008 was given for the completed surveys to be returned. It was decided that, should there be a poor response rate, a second request under Freedom of Information (FOI) would be sent to those trusts that did not respond.

There was a very poor response rate – only 17 PCTs and 36 acute trusts responded.  As a result, it was decided on 4 August 2008 to request the data through the FOI process for those organisations that had not responded by the original deadline. At this time, the surveys were extended to ask about whole-time equivalents for consultant staff groups and epilepsy specialist nurses. An additional question about the number of adults and children living within the local population was also added to the PCT survey. Due to this, information for these questions is not available for the trusts and PCTs that responded to the original request.

The FOI request was sent out on 12 August 2008 to the freedom of information officer at each trust. In accordance with the FOI rules, 20 working days were allocated in the project plan for the return of the surveys. However, a number of acute trusts and PCTs exceeded the 20 day period, with some formally requesting extra time.  A cut off date of the 8 October 2008 was decided for receipt of all FOI requests.

All completed surveys were returned to the health informatics service at Sue Ryder Care and the data were entered into a database for analysis.

The research and report were sponsored by UCB Pharma Ltd.

The final response rate to the survey was strong for both acute trusts and PCTs. Ninety two acute trusts responded (54 per cent) and 105 PCTs responded (69 per cent). But there were considerable differences in the response rate for each question.

  • Responses from individual trusts can be viewed here
  • Responses from acute trusts can be viewed here
  • Responses received after the deadline can be viewed here

Epilepsy Action patient survey

Epilepsy Action also developed a patient survey, which asked epilepsy patients in the UK a number of questions about the services they have received. The survey comprised 25 questions and covered aspects of diagnosis, treatment and continued management of the individual’s epilepsy.

The survey was mailed to 1,000 people who have contacted the Epilepsy Helpline over the last two years. The survey was also available on the Epilepsy Action website home page www.epilepsy.org.uk. The survey was also advertised through Epilepsy Action’s online community and other internal channels of communication. The survey was anonymous. However, respondents had the option to give their contact details and consent for researchers to contact them again for further information.

The survey was designed, published and analysed using SNAP Survey Software (Version 9).

A total of 260 responses to the patient survey were received. It must be noted however that 70 per cent of the respondents experienced seizures, which is not in
accordance with the expected prevalence in the epilepsy population, where up to 50-70 per cent of people with epilepsy are expected to be seizure free. Epilepsy Action therefore accepts that the responses could be skewed to those with more severe problems.

Some of the key findings from the survey were:

  • More than three quarters (80 per cent) of people surveyed had waited over two weeks for a first appointment with either an epilepsy specialist or a general neurologist.
  • Of the respondents who said they'd had an MRI scan in the last two years, half (50 per cent) had to wait over four weeks from the time their specialist recommended they have one. This is despite NICE guidelines that all people with epilepsy should receive a scan within four weeks of it being requested.

The results for each individual question can be viewed here

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