All-Party Parliamentary Group on Epilepsy

The All-Party Parliamentary Group (APPG) on Epilepsy is a group of MPs and Peers who have an interest in epilepsy. They represent all political parties. The APPG is an informal group within parliament that gives people the opportunity to come together on a subject they are interested in.

Epilepsy Action are co-secretariats for the APPG on Epilepsy, alongside SUDEP Action. This means that we help to run the group on behalf of the Chair, Valerie Vaz MP.

The APPG on Epilepsy hosts a number of meetings and events in parliament throughout the year. Working with members of the APPG we can submit responses to inquiries or consultations.

Epilepsy Action wants people to have the opportunity to be involved in the APPG and its agenda. You can email appg@epilepsy.org.uk to register your interest. We can then keep you updated with news and events. You can email us with your suggestions for future meetings.

Members of the APPG

The APPG on Epilepsy is registered with parliament. You can read the official registration on the parliament website here.

The Chair of the APPG on epilepsy is Valerie Vaz MP, who is the MP for Walsall South. There are four Vice-Chairs supporting the APPG. These are: Dame Cheryl Gillan MPSir David Amess MP, Andy McDonald MP and Baroness Hussein-Ece.

Getting your MP to become a member and attend APPG events is a great way to get them to understand epilepsy and support you better.

What the APPG has been doing

Cumberlege and COVID

On Monday 7 September, Epilepsy Action and SUDEP Action hosted a meeting of the All-Party Parliamentary Group (APPG) on Epilepsy, with chair Valerie Vaz MP.

The event was really well attended, with almost 50 representatives, including patient groups, clinicians, researchers and MPs and Peers.

Baroness Cumberlege attended the meeting on Monday, and spoke about her work on the Cumberlege review, and subsequent report on Sodium Valproate – First Do No Harm. The recommendations in the report were discussed by the Baroness along with the next steps to better support women with epilepsy and their babies to keep safe.

The meeting heard from clinicians about the measures they are putting in place to ensure that women with epilepsy are aware of the risks of taking valproate while pregnant, and the challenges there will be in implementing recommendations of the Cumberlege report. 

It was agreed that it is important to keep pressure on the Government to ensure that they implement the Cumberlege report’s recommendations in full. The APPG therefore agreed to write a joint letter to Matt Hancock MP, the Secretary of State for Health, about the need to implement the report’s recommendations in full. You can find more information about our sodium valproate campaign here.

An update was shared by SUDEP Action on international research projects and the Epilepsy Deaths Register, showing the concerning impact of COVID-19 on the epilepsy and bereaved communities.

Finally, Epilepsy Action provided an update on our work regarding the optimising healthcare for people with epilepsy during the COVID-19 pandemic campaign. This campaign is being supported by clinicians and other epilepsy charities.

It has been some time since the APPG met. The group was pleased with how it went and hope to keep the momentum going with our next meeting planned for November.

Purple Day 2018

On Purple Day 2018, the APPG on Epilepsy invited MPs and Peers to come along and ‘go purple’. The aim of the drop-in session was to give MPs and Peers the opportunity to learn more about the condition. People were able to speak to a number of epilepsy organisations, including Epilepsy Action, SUDEP Action, Young Epilepsy, Epilepsy Society and Epilepsy Research UK. They were also able to meet people with epilepsy, and family and friends of people with epilepsy.

MPs told us they learnt a lot and it was great to see so many of them ‘go purple’ for Purple Day. We hope to run a similar event next year.

Epilepsy and PIP

On Monday 9 July 2018 the APPG held an event to discuss Personal Independence Payments (PIP) and epilepsy. Figures show that people with epilepsy are the most likely group to have their benefits cut or removed during the change from Disability Living Allowance (DLA) to PIP.

Attendees heard from people with epilepsy who have experienced the PIP process. There were some very moving contributions and some common themes emerged. The APPG also heard from Jen Durrant from the charity Z2K who have recently published a report on disability benefits and Marsha de Cordova, the Shadow Minister for Disabled People.

Feedback from the event was very positive and the APPG will be following up on points raised with the government and others.

What the APPG is doing next

Upcoming events

We are busy planning the next APPG meeting. When we have a date we will make sure we share it here. If you are on the APPG mailing list, we will also email you with the details.

If you have a suggestion for a future topic for the APPG to cover, please email appg@epilepsy.org.uk.

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