SUDEP Action

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SUDEP Action supporting judicial review of Government to protect epilepsy patients


The Good Law Project has now reached their crowd funding target of £30,000, so will be proceeding with the Judicial Review against Government in relation to medicine shortages - Serious Shortage Protocol (SSP).

Channel4 News aired an informative update (4 March) on how this is legal action will be progressing and how it could affect people with epilepsy.


Last month, (19 February) The Good Law Project threatened to issue judicial review proceedings on Tuesday 26 February, unless Government cancels powers allowing pharmacists altering 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.

They have 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.

Phil Tittensor, of The Epilepsy Nurses Association (ESNA) said, "ESNA fully support SUDEP Action in highlighting the issue of availability of anti-epileptic medication in the UK. We are dealing with shortages now.  Busy nurses, who are caring for patients, are having to call drug suppliers directly and in some cases hunt for medicines for children and adults. Often, these are some of the most vulnerable in our society, for example people with severe learning disabilities.  There is no early warning system for nurses regarding potential shortages, no communication and no guidance. Many nurses are reporting incidences where their patients, carers or GP’s are calling for advice about alternative medication because their prescription will run out in days and drugs are out of stock. This is happening now, despite recent governmental assurances to the contrary. The government has not explained the causes of medicines shortages to us or included us in any consultation. We are left in the dark to pick up the pieces and reassure patients. As nurses working to keep people with epilepsy well, we support SUDEP Action’s call for a public consultation and a patient-centred public framework for managing shortages and thank the Good Law Project for taking on this judicial review.
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."
Dr John Paul Leach (ILAE British Branch​) commented, "Everyone working with people with epilepsy is aware of the need for consistency of supply, dosing, timing, and formulation of anti epileptic drugs. Any attempts to interfere with this are a dangerous retrograde step which can put patients at greater risk of harm from seizures - risks that include injury, burns, fractures and even mortality. We cannot sit by while the long held structures of protection of the individual's treatment are destroyed, either wilfully or by neglect. We advise doctors, nurses, and people with epilepsy to continue to work together. We would also urge the government to put in place measures to facilitate and protect our coalitions of care."

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.

How can I help? 
MPs can play an important role in helping us make sure Government have carefully planned to protect patients should there ever be a medication shortage (whether related to Brexit or at any other time in future). Please contact your MP and ask them to support SUDEP Action in calling for Government to properly scrutinise the permanent changes they are making to law, and carefully plan on how patients can be protected by any impact of these changes. 
Find your MP here, and contact them using this template email (please edit and add your details as required).