SUDEP Action

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People with epilepsy deserve better access to medicines


SUDEP Action is calling for more to be done to ensure people with epilepsy have better access to lifesaving medicines.

A joint letter from SUDEP Action and Epilepsy Action was sent to the Oxfordshire County Council Joint Health Overview and Scrutiny Committee, voicing concerns about changes to the prescribing of sodium valproate which come into effect from January 31, 2024. This week, the committee backed urgent scrutiny attention into the matter, which will now go before their Integrated Care Board and Parliamentary Scrutiny Committee.

Jane Hanna, Director of Policy & Influencing for SUDEP Action and a current Oxfordshire County Councillor, says the valproate issue is compounding other NHS pressures relating to the vital supply of epilepsy medicines to patients.

She said: “Medicines are the first line of defence against preventable epilepsy deaths, including SUDEP. At the moment, the epilepsy scene is frightening because of restrictions on access to medicines, either through shortages or through national medicines policy – and this is happening against a context of rising NHS waiting lists and massive backlogs.”

SUDEP stands for Sudden Unexpected Death in Epilepsy. It is when someone with epilepsy dies and no other cause of death can be found. At least 21 people with epilepsy die each week in the UK. Research shows that SUDEP is connected with seizures, particularly tonic-clonic seizures, but no one knows the exact cause and there may be no single explanation. However, research is clear that in many people with epilepsy, risks can be reduced – with seizure control being a key way to improve safety.

Last year, the MHRA announced new restrictions which mean no one under the age of 55 will be newly prescribed sodium valproate unless two specialists agree there is no other effective or tolerated treatment, or there are ‘compelling reasons that the reproductive risks do not apply’.

According to the MHRA, about one in nine babies born to mothers taking valproate will have birth defects and about 30-40 of 100 will have learning difficulties. The MHRA has also said that there is a risk of reduced fertility in men and boys taking valproate.

However, for around 10% of people with generalised epilepsies, valproate is the first-line defence against hospitalisation and the risk of sudden unexpected death in epilepsy (SUDEP).

The joint letter sent to Oxfordshire County Council by SUDEP Action and Epilepsy Action says there is ‘little understanding nationally on how to apply the new directive around sodium valproate’.  It also voiced concerns that the number of patients managed in primary care by GPs was unknown, so ‘introducing patient pathways will burden an already stretched secondary care service’. 

The letter stated: “We believe that a national communication to all NHS trust medical directors recognises that standards of care are likely to fall because of pressures in the NHS. Given this information and the lack of available resource we do not believe it is possible to implement this directive safely without deferring the deadline of January 31st, 2024.”

Jane Hanna said: “ There is no single drug for epilepsy – instead, we need a toolbox of medicines and combinations for some 40+ different forms of epilepsy. Everyone’s epilepsy is individual so it’s really important people get the most effective treatments for them and that they are able to have proper discussions around the benefits and risks of medicines, as you would expect for any other condition.”

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