e-Petition against automatic substitution of anti-epileptic drugs

Updated 2 October 2009: A big thanks to everyone who has signed the e-Petition, or campaigned in other ways (such as writing to their MP) on the issue of automatic generic substitution. 

The e-Petition has now closed, managing to attract 12,158 signatures.

We are pleased to let you know, in part as a result of the petition, that the government has told us that they will be launching a formal consultation on the subject "in the autumn". This will give us, and other affected groups, an opportunity to formally register our concerns and put forward our representations.

Epilepsy Action will contribute, and we will let you know if there is an opportunity for individuals to do the same. Again, many thanks to everyone who has joined us in this campaign. 

As some of you may already be aware, from January 2010 new dispensing regulations will be in place throughout the UK. Pharmacists will be expected to change the brand of drug named on a prescription and replace it with a different, generic brand. This is as part of the Department of Health’s 2009 Pharmaceutical Price Regulation Scheme agreement. 

This agreement will make 'generic substitution' legal. This means a pharmacist can (and will) replace more expensive branded versions of drugs for cheaper generic versions. They will not have to consult with either the patient or the doctor who wrote the prescription.

Epilepsy Action is concerned about this. Unless epilepsy is excluded from this legislation it could lead to thousands of people with epilepsy having their medication switched, for purely financial reasons. There will be no consideration of how this will affect them, or their epilepsy.

Background

From January 2010 pharmacists will be expected to change the drug named on a prescription and replace it with a different generic. This is against the National Institute for Health and Clinical Excellence (NICE) guidelines for epilepsy. NICE provide guidance on the treatment and care of people with epilepsy. There is also significant evidence from doctors and patients that some people with epilepsy have difficulties when changed between different versions of the same drug.

It is recommended that people with epilepsy, taking anti-epileptic drugs (AEDs), need to maintain very precise levels of active ingredients in the bloodstream.

A doctor with a special interest in epilepsy should change someone’s epilepsy medication, not a pharmacist or health economist. People with epilepsy should receive the same version of their AED unless their doctor prescribes otherwise for medical not financial reasons.

We have written to the Department of Health expressing our concerns.

Petition

We are campaigning to make AEDs exempt from the rules of generic substitution.

As part of this, Epilepsy Action (as part of the Joint Epilepsy Council) ran a e-Petition on the Downing Street website. This was an online petition to the Prime Minister asking him to take action in this area. With enough signatures the government is committed to respond to everyone who signs about the issues raised.

You can view the petition at http://petitions.number10.gov.uk/epilepsygenerics

• For more information about these issues, see our information on consistency of supply or call the helpline on 0808 800 5050.
• View our Consistency of Supply fact page
• If you have been affected by having different versions of your AEDs dispensed please tell us your story. Leave a comment on this page or write to us at Epilepsy Action, New Anstey House, Gate Way Drive, Yeadon, Leeds, LS19 7XY.