Policy Briefings

Policy Briefings

Tuesday, 02, Dec 2008 12:41


The following is a basic outline of Epilepsy Action’s key messages. Full details of our ongoing work can be found in our Annual Report.

General Key Messages

  • People living with epilepsy are affected by a number of issues, including stigma, education, welfare, employment, transport, women’s issues, carer’s issues and disability rights.

  • The provision of services for people with epilepsy in the UK is poor.

  • There is a serious shortage of epilepsy specialists.

  • The All Party Parliamentary Group Inquiry into epilepsy services has released its findings in the report Wasted money, wasted lives and condemns continued government failure to meet the needs of people living with epilepsy. Current services fall well short of the standards set out by five government reports in terms of waiting times for specialists and diagnostic tests. Research findings indicate that little is likely to change in the next few years.

  • Epilepsy Action is calling for the Government to immediately put in place a programme to increase the number of adult neurologists from 455 to 781; paediatric neurologists from 75 to 150; learning disability specialists from 340 to 500; and neuroradiologists from 110 to 160, within five to ten years.

  • It is unacceptable that every year there are 440 unavoidable deaths from epilepsy related causes in England; £189 million is wasted every year.

  • Misdiagnosis rates in the United Kingdom, where a diagnosis of epilepsy is incorrectly made, are between 20-31 per cent. This equates to 105,000 people taking drugs they don’t need.

  • A national plan of epilepsy training for GPs, A&E doctors and other general paediatricians and clinicians is needed to increase their epilepsy knowledge base to the appropriate level required for them fulfil their respective roles.

  • Epilepsy Action believes that every patient should have a clear and comprehensive personal care plan (as recommended by NICE) that is shared by the specialist and GP.

  • All GPs should identify two patients with epilepsy within their practice who are currently experiencing seizures but who could, with optimal treatment, be seizure free, and ensure they are appropriately referred to specialists for a more thorough review.

    Key Campaign Messages

    Epilepsy Specialist Nurse Job Threats:

  • Epilepsy Action is campaigning to save epilepsy specialist nurse posts.

  • Cuts in NHS funding have led to a threat in epilepsy specialist nurse posts across the UK.

  • Epilepsy Specialist Nurses are a crucial source of support and advice to patients with epilepsy. If these nurses spend less time on specialist duties, there will be a lack of in-depth, specialist knowledge of the complexities of epilepsy available for patients. As a result, the hospital will not be able to meet the needs of local people.

  • A further 920 epilepsy specialist nurses are needed in England/UK.

    Consistency of Supply:

  • People with epilepsy should receive the same version of anti-epileptic drugs (AEDs) whenever they get a repeat prescription, unless their clinician prescribes otherwise. It should be from the same manufacturer, and from the same country of manufacturer. This applies to ‘branded’ generics and the usual brand leaders alike.

  • In October 2004, the NICE (National Institute of Clinical Excellence) guideline on epilepsy recognised the importance of consistency of supply for AEDs.

  • There is significant and compelling anecdotal evidence from clinicians and patients that indicate a number of people experience difficulties in the management of their condition when switching from branded to generic or between generic AEDs.

    Take Control:

  • Approximately 80,000 (or five out of ten) people with epilepsy in the UK are experiencing unnecessary side effects and seizures.

  • Better treatment for epilepsy could mean fewer, less severe or no seizures for seven out of ten people with epilepsy.

  • Many people with epilepsy are continuing to take drugs which may not offer them the best seizure control. Not achieving the best possible control of a patient’s seizures could be putting their health at risk.

  • Take Control aims to motivate people with epilepsy to improve their own quality of life and encourage discussion with their GP to ensure that they are receiving the best treatment options available.

    Women’s Campaign:

  • Having epilepsy and taking anti-epileptic drugs (AEDs) can affect a woman’s choice of contraception, her ability to have children, and her choices about hormone replacement therapy (HRT).

  • All women with epilepsy should be provided with the information they need by epilepsy health professionals about the risk of taking AEDs during pregnancy, the risk of congenital anomalies and the potential interaction with the contraceptive pill.

  • Epilepsy Action urges all women with epilepsy to seek pre-conception counselling.

    National Epilepsy Week

  • National Epilepsy Week is held every year to highlight important issues that affect people with epilepsy and to campaign for change.

  • A theme is chosen each year and focuses on issues that affect the lives of people with epilepsy, including: education, welfare, employment, transport, women’s issues, carer’s issues and disability rights.

    • Latest Press Releases

    Epilepsy Action provides new service for helpline users

    Advice and information about epilepsy is now available at the touch of a button thanks to a new text message service launched today (March 3).

    Epilepsy Action: ‘Just doodle it!’

    What do Joanna Lumley, Ricky Gervais and Suzanne Shaw all have in common? The answer, National Doodle Day 2008 of course! The nation’s doodlers are being encouraged to join these celebrities and put pen to paper and join the fifth National Doodle Day on March 7.

    Epilepsy Action: Dr Hilary presents new epilepsy first aid DVD

    Epilepsy Action: Medical services continue to fail women with epilepsy.