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UK epilepsy coalition’s statement and call to government

A coalition of epilepsy organisations including Epilepsy Research UK has today publicly called on government for an urgent review of current epilepsy medicines policy relating to sodium valproate, a commitment to research and a national and local framework for epilepsy.

We are asking for a UK-wide government commitment to fund research into epilepsy including interventions to reduce epilepsy-related deaths, research on medicines including sodium valproate and new drugs supporting the priorities established by the UK Epilepsy Priority Setting Partnership.

Read the full statement below.

The UK epilepsy organisations listed here are joining together in an urgent call for a decision by the Medicines and Healthcare products Regulatory Agency (MHRA) and Ministers to be paused immediately.

A new policy announced to the public on December 12th, 2022 brings in a blanket approach requiring all people under 55 (including boys and men for the first time) that are prescribed sodium valproate to have two signatures from specialists confirming that there is no suitable alternative medication.

This is a dramatic shift in practice and risk for people with epilepsy without regard to each person’s situation and life choices and totally out of proportion to the risks to patient safety.

The lack of consultation has been significant by its absence; accountability is unclear which is why we have written with one voice to the UK Secretary of State for Health and Social Care calling for the plans to be paused immediately which you can read here.

The vital importance of openness and consultation with our community on the scientific basis and impact of the new policy is because epilepsy medicines are used as the best way to help treat 7 out of every 10 patients achieve seizure-freedom.

Like other chronic conditions, being on a medicine that works is the main way to help people live full and active lives. For 10% of people who experience generalised epilepsies it is also the first line of defence against visits to A&E and the risk of SUDEP (Sudden Unexpected Death in Epilepsy). Switching someone from a medicine that is working for them to one that is less effective increases the risk of seizures.

We know that a Commission on Human Medicines implementation group has also warned of the broad harms from the policy but we were told that the scope of the group does not include altering the decision.

The change in policy follows a safety review by the Commission of Human Medicines. Despite requesting to see this, we have not been permitted to do so and note that not only was our community not consulted but the CHM’s Sodium Valproate Expert Working Group on which people with epilepsy as well as senior clinicians are represented was not consulted.

Aside from the need for all the points to be clarified, the new policy will significantly increase pressures across the NHS and social care at the very time it needs life support because of rising pressures and long-standing general and epilepsy specific workforce shortages. It will also make it less likely that women will access counselling or the full and clear information they need about epilepsy medicines for their treatment. The valproate families and charities have been calling for this for decades.

The MHRA response to a Freedom of Information request is clear that we will not be given any opportunity to understand their rationale behind their decisions for the extension to children and men and/or to have an opportunity to add our views until this is ready for release to patients, clinicians and the public.

After months tirelessly trying to seek the reassurance we need in private to restore confidence, we remain as concerned as ever, most especially given recent evidence of rising inequalities in people with epilepsy and their families. There are at least 21 epilepsy-related deaths a week, mainly in the young, and many are avoidable.

The charities and our beneficiaries need to see and be consulted on the scientific basis for the regulatory decision and the impact it is likely to have on patient safety. Ministers and the MHRA need to pause and allow time for a considered response to be given to the recommendations listed in this letter.

We are calling for an urgent review and scrutiny of this policy; evidence of a commitment to a national and local framework for epilepsy – to ensure the safeguarding of life and towards research. In the meantime we have advised all people with epilepsy not to stop or alter their prescribed medication and charity helplines are available for information and support.

For all press enquiries and spokespersons about this joint statement from the epilepsy coalition please contact rob.harris@sudep.org

This statement has been agreed by – and reflects the views of – the following organisations:

EPILEPSY ACTION

EPILEPSY CONNECTIONS

EPILEPSY NURSES ASSOCIATION (ESNA)

EPILEPSY RESEARCH UK

EPILEPSY SCOTLAND

EPILEPSY SOCIETY

EPILEPSY WALES

INTERNATIONAL LEAGUE AGAINST EPILEPSY (ILAE, BRITISH BRANCH)

SUDEP ACTION

QUARRIERS

YOUNG EPILEPSY

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