On 5 January 2010, the UK Department of Health launched its consultation into introducing generic substitution called “The proposals to implement 'generic substitution' in primary care, further to the Pharmaceutical Price Regulation Scheme (PPRS) 2009.”
Epilepsy Action has been campaigning for this full government consultation, and for anti-epileptic drugs to be excluded from any generic substitution proposals.
Epilepsy Action is pleased to see that the government has listened to the concerns of people with epilepsy. 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.
The consultation is available on the Department of Health website.
The consultation is open until 30 March 2010.
Three options
The three options that the Department of Health is proposing and asking us to choose between are;
Option 1 – The system remains as it is now (No introduction of generic substitution).
Option 2 – Substitution is introduced, but there is a list of drugs not to be substituted.
Option 3 – Substitution is introduced but only for a list of selected drugs.
The consultation also includes two options for allowing prescribers to opt individual patients out of any scheme.
What happens now?
Epilepsy Action is encouraging as many people as possible to respond to the ‘consistency of supply’ consultation. People can respond to the consultation by:
- Completing the department’s consultation form.
To help with this, we have prepared some extended notes which highlight what we believe are the main points, or - Sending this prepared letter to the consultation team.
This may help if you are unsure what to write, but you want to support our position.
We also recognise that not everyone will be able to prepare their own submission. Therefore if any supporter has any general comments to make, on either the consultation or the issue of ‘generic substitution’, we would encourage them to send them to us and we will collate and send these in.
Epilepsy Action hopes to anonymously quote the comments of our members in the submission, to show that this issue is of genuine concern to people with epilepsy. 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.
Please note, this consultation applies to England only.
The Department of Health states that governments of Scotland, Wales and Northern Ireland will make their own policy regarding generic substitution.
We are writing to the secretaries of health in Scotland, Wales and Northern Ireland to ask their plans for the introduction of generic substitution, and will update this page with the information when we receive it.
Campaigns
- Automatic substitution of anti-epileptic drugs (updated 5 February 2010)
- Epilepsy in England: time for change
- Women's campaigns
- National Epilepsy Week
- 'Epilepsy Aware' scheme for GP practices and pharmacies
- 'Epilepsy Aware' scheme for beauty therapists
- Previous campaigns
- Campaign Supporters' Group
- Consultation responses
- How Do I Lobby For Better Epilepsy Services?
- Surveys
Epilepsy Helpline
- UK freephone 0808 800 5050
- International +44 113 210 8850
- Email: helpline@epilepsy.org.uk
- Txt msg: 07797 805 390 info
- Live online: Tuesdays and Thursdays 1230-1330 UK time







Comments
I don't wish to cloud the issue of generic substitution, but there are often times when pharmacies procure branded drugs from the EU, with names not necessarily identical to those for the UK market. For example Tegretol Retard will be Tegretol CR or LR in foreign language boxes, which have stick on English labels. In other words parallel imports. Is the issue of generic substitution entirely separate from parallel imports?
Hi Robert, thanks for the post.
Generic substitution and parallel importing are linked as both issues cause problems for consistency of supply.
Just as different generic versions of a drug can have different ingredients, so can versions produced abroad.
It may be that Tegretol Retard is slightly different from Tegretol CR or LR, even though they are all produced by the same parent company (Novartis-Geigy).
For this reason we would treat an imported drug like a different version.
Therefore we recommend that people with epilepsy should receive the same version of their drug, from the same country of origin, each time.
Pete Scott, Epilepsy Action
Epilepsy medication needs to stay as it is and not go over to Generic all AED's should stay as they are, this is the best way for Epileptics to be treated. I have been interested in the treatment of Epilepsy for over thirity years, I have been an epileptic myself for over fifty years