SUDEP Action and ERUK supporting judicial review of Government to protect epilepsy patients

Posted Feb 20 2019 in News from Epilepsy Research UK

On 19th February the The Good Law Project threatened to issue judicial review proceedings on Tuesday 26 February, unless the Government cancels powers allowing pharmacists to alter prescriptions in the event of medicines shortages. SUDEP Action are supporting this process by providing evidence on the potentially catastrophic impact this could have on those living with epilepsy.

Channel4 News aired an informative update (4 March) on how this legal action will be progressing and how it could affect people with epilepsy.  Epilepsy advocate Faye Waddams (who has epilepsy) and QC Jolyon Maugham (of the Good Law Project) did a sterling job raising awareness about the very serious concerns about the potential shortages of AEDs for people with epilepsy.  In case you missed it, you can watch the interview here: 

Previously SUDEP Action had written to the Department of Health seeking urgent clarity on the legislation changes they have brought into force without proper consultation which could impact on anyone with a health condition should there be any form of medication shortage in future (caused by Brexit or otherwise). Should these concerns not be addressed, a judicial review will be filed.

This follows the pressure from our epilepsy coalition predicting a rise in unnecessary deaths if the new permanent power (9 February) permitting ministers to manage serious medicine shortages in the UK, is enforced.

Jane Hanna OBE, Chief Executive of SUDEP Action, who is supporting the judicial review said, “Patients, doctors and pharmacists are used to prescriptions & the processes surrounding them. For people with long-term conditions, like epilepsy, what is on the prescription may represent months and years of trying out the best medication schedule. Changes made to this delicate balance can for some, undo this in an instant. For epilepsy this could lead to less seizure control, impacting on quality of life (ie: losing a driving licence, affecting home and work) and significantly for some this can prove fatal.  

At present if a supply of medication is made in error, lessons can be learnt because of the clarity of who signed and who supplied the prescription. We are leading a coalition of epilepsy charities who are extremely concerned however, that this new law has been rushed in with such speed and no one knows how patient safety will be properly protected. Whilst pharmacists are skilled professionals, they are not specialists in long-term conditions and their associated risks, and they do not have the full patient history. If under this law the clinical prescriber who knows the patient is to be by-passed by a group of centralised clinicians and individual pharmacists, we need the Government to take the time to make sure this is safe. Lives cannot be risked because of short deadlines.”

Last month, the epilepsy coalition wrote a letter to the Guardian highlighting this serious issue. In December, SUDEP Action wrote to the Secretary of State for Health and Social Care for England.

Maxine Smeaton, Chief Executive of ERUK, who is part of the epilepsy coalition said, “There are over 40 types of epilepsy. Each distinct form of epilepsy has its own unique presentation and response to treatment. Research has shown that when changing between anti-epileptic drugs (AEDs), it can take weeks, if not months, to establish the correct dosage and combination of medication in order to achieve seizure control. Careful consideration also needs to be given to how different drugs can affect and be affected by other medications. Changes to AEDs therefore need to be carefully planned with a specialist neurologist.  It is essential that the government urgently considers the potentially devastating impact on people living with epilepsy.”

If you are a clinician or a person with epilepsy, and are concerned about medication availability, you can find out more information and steps that you can take on our Brexit and Managing risks page.

It is important that people with epilepsy continue to take their medication regularly and as prescribed, and discuss any any concerns with their clinician before making any changes.

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