Epilepsy APPG Meeting

On Monday 7 September 2020, I chaired a virtual meeting of the APPG on Epilepsy.

In the first half of the meeting Baroness Cumberlege, chair of the Independent Medicines and Medical Devices Safety Review, spoke about the findings and recommendations of their report ‘First Do No Harm’. The Review heard from hundreds of women and it focused on victims of the Primodos hormone pregnancy test, the anti-epilepsy drug sodium valproate and surgical mesh. It was set up in February 2018 after years of campaigning by families and victims and revealed a culture in which serious medical complications were dismissed for several decades.

The report makes wide-ranging recommendations, including the appointment of an independent patient safety commissioner, an overhaul of the Medicines and Healthcare products Regulatory Agency and the expansion of the General Medical Council register to include a list of financial interests for all doctors.

Following Baroness Cumberlege’s speech and Q&A, the APPG agreed to write a letter to the Secretary of State for Health and Social Care reiterating the need to implement the findings of ‘First Do No Harm’ in full.

The second half of the meeting was a discussion of Epilepsy and Covid-19: optimising care and the impact on epilepsy risks, mortality and bereavement.  Ben Donovan, Jennifer Thorpe, Dr Rhys Thomas and Dr Arjune Sen presented preliminary research findings from two research projects led by SUDEP Action, the University of Oxford, Newcastle University and the Epilepsy Deaths Register. Members of the APPG discussed the ways in which Covid-19 pandemic has presented a number of unique challenges for people living with epilepsy, including difficulty accessing the right level of treatment and support. Members of the APPG also heard how funding for epilepsy treatment has been impacted by the virus.

The purpose of the APPG on Epilepsy is to raise awareness of epilepsy among Parliamentarians; to engage with individuals and organisations in supporting the promotion and needs of the epilepsy community. Secretarial support for the group is provided by Epilepsy Action and SUDEP Action. If you would like to learn more about the APPG on Epilepsy or become a member, please contact me by emailing [email protected].