Update of the NICE Clinical Guideline for epilepsy, published on Wednesday 11 January

The National Institute for Health and Clinical Excellence (NICE) is the independent organisation providing national guidance on treatments and care for people using the NHS in England and Wales. The guidance is for healthcare professionals, patients and their carers to help them make decisions about treatment and healthcare.

Overall Epilepsy Action cautiously welcomes the updated guideline. We believe the NICE Clinical Guideline is useful to help us campaign for better health services, by setting a standard.

The original NICE guideline was produced in 2004, and in the years since then the knowledge and treatment for epilepsy has improved. We remain disappointed that NICE did not conduct a complete review of the guideline. This would have taken into account all these changes and made the guideline as up-to-date as possible.

What’s new in the 2012 guideline?

The biggest change to the guideline is that it now includes recommendations about which drugs are most effective to treat different types of seizures. These were in a separate guideline.

The guideline recommends which drugs should be tried first, which ones should be considered if these don’t work, and which drugs should be ‘added’ to other drugs.

Other changes include the following.

• Buccal midazolam is now the recommended emergency rescue medication. At the moment, buccal midazolam is licensed for use in children but is an off-licence treatment for adults. This means it can only be used if it is prescribed for the individual person. In the 2004 guideline, rectal diazepam was the recommended rescue medication.
• The guideline more strongly recommends the use of the ketogenic diet for young people.
• The guideline provides more information about the prescribing of AEDs to women of child-bearing age, and discussion of risks, in particular sodium valproate.

Epilepsy Action is very concerned about the change of language in recommendation 1.9.1.4. This relates to allowing a change of brand or version of an anti-epileptic drug, if a prescriber and a patient have discussed the issue. This is sometimes called generic substitution. We are concerned that this could be interpreted as permission to substitute medication in individual situations.

Epilepsy Action is writing to Andrew Dillon, Chief Executive of NICE, to ask for justification for the change. We are requesting a meeting to discuss this recommendation and are asking NICE to clarify that generic substitution of anti-epileptic drugs should not occur, for reasons of patient safety.

You can see all the changes, including the drug recommendations on the NICE website

What does this mean for people with epilepsy?

You are unlikely to see any immediate changes to your treatment. Your doctor will still recommend the best treatment for you. However we hope the guideline will help doctors make the best choices for their patients.

We hope that this guideline will prompt clinicians and healthcare providers to look again at the treatment they provide, and make sure they can provide a service that is as good as NICE recommends.

If you are concerned about issues of consistency of supply (having your usual drug changed) or ‘generic substitution’, please consult our Consistency of Supply webpage. You can also ring our Epilepsy Helpline on freephone 0808 800 5050 (UK), email your question to helpline@epilepsy.org.uk or tweet @epilepsyadvice.

As always, please do not stop or change your treatment without speaking to your epilepsy specialist.

Epilepsy Action would like to thank its clinical advisors, who worked with us to prepare our responses to the guideline consultations.