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of everyone affected by epilepsy


Update: March 2010

March 2010

Epilepsy Action has been campaigning for all anti-epileptic drugs (AEDs) to be excluded from the government’s generic substitution proposals.

This is because we believe brand switching for some people with epilepsy has caused breakthrough seizures, worsening of their seizure control or worsening of side-effects.

Last year, over 12,000 people signed a Number 10 petition calling for AEDs to be exempt from the proposals, demonstrating the importance of this issue for people with epilepsy. You can see the government's response on the Number 10 website.

On 5 January 2010, the UK Department of Health launched its consultation into introducing generic substitution in England, called “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009.”

The consultation closed on 30 March 2010. We are now awaiting the government’s response to the consultation, and their final proposals. We expect these to be published in the summer.

Epilepsy Action would like to thank all its members, friends and supporters who took the time to support this campaign. Particularly those who;

  • contacted the organisation to show support.
  • sent in their experiences of drug switching.
  • wrote to their politician to register their concern.
  • took part in our media work to raise awareness of the changes.
  • signed the e-petition and encouraged others to sign.
  • attended a consultation event.
  • sent comments to the consultation team.

We hope that the Department of Health act on our concerns, and those of the wider epilepsy community, and make sure there is a permanent exclusion for all anti-epileptic drugs.

However the campaign may not be over. If the final proposal does not protect treatment for people with epilepsy, we will do our best to stop the scheme being introduced.

Information on the government’s final proposals for England will be published on this page when they are announced.

If you have comments to make, or would like to tell us your experiences, please put them in writing and send them to Pete Scott, campaigns and policy officer. Pete can be contacted by emailing pscott@epilepsy.org.uk or writing to him at New Anstey House, Gate Way Drive, Yeadon, Leeds LS19 7XY.

Scotland, Wales and Northern Ireland

The Ministers of Health in Scotland, Wales and Northern Ireland have told Epilepsy Action that they plan to consult on introducing generic substitution. These consultations will consider the outcome of the consultation in England, and are expected later in 2010.

Epilepsy Action will again campaign for all anti-epileptic drugs to be excluded from any generic substitution proposals. We will update our website when any developments happen.

Generic substitution timeline

  • December 2008 – The UK government announces plans to introduce ‘generic substitution’ as part of the 2009 Pharmaceutical Price Regulation Scheme.
  • February 2009 – The first parliamentary question on the introduction of generic substitution, asked in the Northern Ireland Assembly by Mr Alex Easton MLA.
  • April 2009 – We carry out our anti-epileptic medication survey through our magazine Epilepsy Today magazine, completed by nearly 1,500 members.
  • May 2009 – Epilepsy Action’s Deputy Chief Executive meets with the Principal Pharmacist at the Department of Health, to set out our concerns.
  • 1 July 2009 – Epilepsy Action, with the Joint Epilepsy Council, launches an e-petition on the Downing Street website, petitioning for a full public consultation into any plans.
  • 29 July 2009 – Epilepsy Action receives notification that the Department of Health will publicly consult on generic substitution proposals “in the autumn”.
  • August 2009 – Epilepsy Action’s Deputy Chief Executive Simon Wigglesworth sends the Department of Health a 35 page document, detailing why anti-epileptic drugs should not be generically substituted.
  • September 2009 – Epilepsy Action press office launches a media campaign to raise awareness of consistency of supply. Over 60 pieces of media coverage achieved, including coverage in The Time and The Daily Mail.
  • October 2009 – The e-Petition closes, having attracted 12,205 signatures.
  • January 2010 – The Department of Health publishes “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009” consultation.
  • March 2010 – Consultation closes. Epilepsy Action makes its submission.

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