In December of 2018 it became apparent that in the event of serious drug shortages as a result of a ‘no deal Brexit’, the Government had plans to use emergency powers to authorise pharmacists to overrule medical prescriptions.
This ‘serious shortage protocol’ caused serious concern amongst a coalition of epilepsy and neurological organisations who are concerned with safeguarding patients. The consortium felt that these government plans could risk the health of people with epilepsy as many people with epilepsy are also on other medications and any changes to their medication require careful management because of interactions between medicines.
As a result, on 3rd January a coalition of like-minded epilepsy charities, neurologists and MP’s wrote to the Sunday Times to raise awareness of the issue regarding continuity of medicines. We at Epilepsy Research UK were one of the many signatories. It was published on 6th January. You can read the article here:

6th January 2019
Epilepsy medications will be exempt from Brexit after coalition intervenes
The Sunday Times reports Serious Shortage Protocol for medicines will not apply to epilepsy, after epilepsy coalition intervenes to protect patient safety, but campaigners warn we need plans public and in writing
A coalition of epilepsy, neurology organisations and the All Party Parliamentary Group on Epilepsy, who predicted rising deaths from use of a Serious Shortage Protocol for medicines (The Sunday Times, 6th January 2019) call on government to make a clear statement regarding their medical contingency plans for epilepsy and neurology, after The Sunday Times reports epilepsy will now be excluded from the protocol.
Last month, it emerged that in the event of serious drug shortages, the Government has plans to use emergency powers to authorise pharmacists to overrule medical prescriptions.
The leaks to The Times (7th December, 2018) and an `informal private consultation` by Government on a draft Serious Shortage Protocol’ which included epilepsy, raised anxieties across patient organisations. Expressing concerns about the risks to patients if the proposed protocol was to go ahead, allowing pharmacists to overrule medical prescriptions in the event of a national medical shortage. On 21st December 2018, the Government published it’s EU Exit Operational Readiness Guidance including a “Serious Shortage Protocol” that would involve changes to medicines legislation.
Epilepsy affects over 600,000 people in the UK, and people with epilepsy risk developing new seizures if their usual medication is altered. Although, for some medications a change in version is not risky, but substituting a different version of many epilepsy medications, risks breakthrough seizures and side-effects. There are 21 epilepsy-related deaths each week, many in the young. This planned contingency measure has the potential to make matters worse. We predicted unnecessary deaths resulting from the use of these powers.
A letter was sent to Matt Hancock MP, Secretary of State for Health and Social Care, on 21st December 2018, calling for action to address the likelihood of medicines shortages in the near future and expressing concerns about the Serious Shortage Protocol.
The coalition letter was sent to The Sunday Times on 3rd January 2019, calling again for the Government to rethink the plans that have been shared with the sector and urges full openness and scrutiny of emergency planning.
The Sunday Times has since reported today (Sunday 6th January 2019) that the Government will exclude epilepsy from the Serious Shortage Protocol, following the request for a response to our letter.
It appeared hopeful that the government had listened as we received unofficial feedback that they had agreed to exclude epilepsy medications from this protocol. However, we did not receive the formal response we’d hoped for and took the decision that we needed to continue to push.
We contacted the Times again but they were not prepared to publish a further letter, we therefore went to The Guardian who published the information here:
In addition to this collaborative effort there have been multiple All Party Parliamentary Groups where this issue has been raised and in December, our CEO Maxine Smeaton attended a day at parliament with other Chief Executives from the Association of Medical Research Charities where we also shared our views and concerns with Members of Parliament.
It is a priority for us and you will see that our Chair of Trustees, Professor Matthew Walker, our Vice President Professor Helen Cross and a member of our Scientific Advisory Committee, Professor Hannah Cock are all supporting this campaign.