SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

All Party Parliamentary Group for Epilepsy

APPGE logo

 

The All Party Parliamentary Group (APPG) for 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.

SUDEP Action and Epilepsy Action Logos

SUDEP Action and Epilepsy Action jointly provide the secretariat for the APPG for Epilepsy. This means that we help to run the group on behalf of the Chair, Paula Sherriff MP. 

The APPGE hosts a number of meetings and events in parliament throughout the year. Working with members of the APPGE we can submit responses to inquiries or consultations. Find out how you or your organisation can get involved here.

 

Aims of the APPGE

Making a difference with and for the Epilepsy Community

  • To raise awareness of epilepsy with Parliamentarians & Policy Makers
  • To highlight key issues being faced by people with epilepsy, their families & clinicians
  • To promote the need for improved services & care for those living with epilepsy
  • To influence change in the hope of improving lives and outcomes for people with epilepsy

Values of the APPGE

  • Inclusive – Bringing the epilepsy community together to discuss the issues that matter
  • Collaborative – Working together on common goals
  • Respectful – A safe space to discuss important, sometimes sensitive issues. With differing views being listened & responded to without negativity  
  • Evidence-Based – Using the latest evidence to influence policy-makers & make a case for change
  • Personal - Using personal experiences to support evidence. Being mindful that specific personal issues, concerns & views are not able to be directly addressed by the APPGE 
     

Members of the APPGE

The APPGE is registered with Parliament. You can read the official registration on the Parliament website here

The Chair of the APPGE is Paula Sherriff MP, who is the MP for Dewsbury. Paula is one of Epilepsy Action’s Vice Presidents and has a personal link with epilepsy. Because of this, Paula is passionate about supporting the condition in Parliament. There are four Vice-Chairs supporting the APPG.

These are Dame Cheryl Gillan MP, Valerie Vaz MP, Sir David Amess MP & Baroness Hussein-Ece.

Other members of the APPG include Andy McDonald MP (Treasurer) & Teresa Pearce MP (Secretary). 

Asking your MP to become a member and attend APPGE events is a great way for them to understand epilepsy and support you better. Find out how to do this here

 

Supportive Organisations

The APPGE is an opportunity for epilepsy organsisations to get together to raise awareness of key epilepsy issues, lobby MPs and make sure the voices of our supporters are being heard in Parliament. At some meetings there will also be spokespeople to share their experiences eg: People with epilepsy, clinicians, bereaved families & researchers. 

If you're an organisation that would like to be involved in the APPGE and show your support please see our Getting Involved page or email appg@epilepsy.org.uk 

 

What the APPGE has been doing so far in 2019

July 2019  - APPGE on the Impact of Brexit on Epilepsy

At our July meeting we raised awareness of the potential impact of Brexit on the epilepsy community (people with epilepsy, their families, carers, clinicians, researchers and epilepsy organisations). A round table discussion was held on key issues and challenges already being faced due to Brexit uncertainty, and concerns over what may happen if No-Deal Brexit becomes a reality.

A Brexit Statement was created from discussion points made to summarise the key concerns. A letter was also sent from Paula Sherriff MP (the APPGE's Chair) to the new Prime Minister (elected the day after our meeting) to raise awareness of key epilepsy issues and requesting a meeting. 

Our Brexit Statement: PDF icon APPGE Brexit Statement (July 2019)
 

Our Letter to PM Johnson: PDF icon APPGE Letter to Prime Minister Johnson (July 2019)
 

Meeting Slides: PDF icon APPGE Slides - Impact of Brexit on Epilepsy (July 2019)
 

Meeting Minutes: PDF icon APPGE Meeting Minutes - Impact of Brexit on Epilepsy (July 2019)

 

Find out what the APPGE worked on last year here. 

 

What the APPGE is doing next

Upcoming events

We are looking to schedule another APPGE meeting before the end of 2019 if it is possible to work around Parliament's current workload. When we have a date we will make sure we share it here.

If you are on the APPGE mailing list, we will also email you with the details so that you can make suggestions and invite your local MP to the meeting.

Find out more ways you can get involved here

If you have a suggestion for a future topic for the APPGE to cover or to add yourself to the mailing list, please email appg@epilepsy.org.uk

 

Key Epilepsy Dates

There are a number of important dates throughout the year when the APPGE and epilepsy organisations will be raising awareness of primary issues. Key dates are listed below:

February:       International Epilepsy Day (2nd Monday of Feb)

March:            Purple Day (26th March)

May:               Online Epilepsy Memorial Day (10th May)

                       National Epilepsy Week (3rd week in May?)

October:         SUDEP Action Day (23rd Oct)

 

 

Information on how you can get involved in supporting these events will be updated nearer to each event.

Individual epilepsy organisations will also support other key awareness events throughout the year to raise awareness of key issues the epilepsy community face.

 

APPGE Resources

Coming soon.