SUDEP Action

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Urgent Government support is needed to tackle epilepsy deaths


SUDEP Action urges MPs and policy makers to support vital collaborative work and key recommendations to tackle epilepsy deaths

There is an urgent need to tackle epilepsy-related deaths. A need to better support people with epilepsy, their families, and their clinicians to discuss, manage and reduce epilepsy risks. At least 21 epilepsy deaths a week in the UK, of which 42% could be potentially avoidable with improved knowledge and better access to services; it’s time for policy makers to listen.

SUDEP Action’s recent Prevent21 Summit on Tackling Epilepsy Related Deaths saw over 43 different expert organisations join together, to flag what important steps could be taken to save future lives, and help people with epilepsy live well, for longer.

At the All Party Parliamentary Group for Epilepsy (APPGE)* at The House of Commons on 28th November 2018, the charity presented the findings and key recommendations from the Prevent21 Summit to MPs, policy-makers, epilepsy organisations and individuals with an interest in epilepsy. The APPGE is chaired by Paula Sherriff MP, who has personal experience of the impact of epilepsy on families.

SUDEP Action gave an expert overview of the key issues about epilepsy deaths, also provided an opportunity for questions and encouraged those in the room to consider how they could help the charity, and supporting organisations, to save future lives:

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Paul at APPG

 

Dr Paul Morrish, Consultant Neurologist, presented on the recent Public Health England Report looking at what data into epilepsy deaths show us and government – highlighting the need for Epilepsy to be made more of a priority by Government within the NHS.

 

 

Jane at APPG

 

Jane Hanna OBE, CEO of SUDEP Action, then reminded those in the room of why tackling epilepsy deaths is so very important, by sharing a story of one of our bereaved families. She also gave an overview of the UK Prevent21 Summit – the first dedicated event of its kind in the UK since the 1996 workshop on defining SUDEP.

 

 

Mike at APPG

 

Professor Mike Kerr, Professor of Learning Disability Psychiatry, shared the Prevent21 Summit outcomes and recommendations to tackle epilepsy deaths. These seven key outcomes were agreed, by all organisations at the event, as being vital steps. Which, if supported and achieved, could make a significant different to those living with or supporting those with epilepsy, as well as to those who lose a loved one to the condition.

 

You can read our summary report including the key recommendations below. This report has been endorsed by the APPGE as well as the Neurological Alliance:
 

PDF icon SUDEP Action's Prevent21 Summit Report - Outcomes & Recommendations

 

Key outcomes that are already happening to tackle epilepsy-related deaths were shared at the meeting:

  • Prevent21 Summit Recommendations are being shared with supportive organisations and policy makers
  • Epilepsy & Behaviour Journal Supplement will share evidence and outcomes of the Prevent21 Summit. Can MPs and supportive organisations help us circulate this?
  • Letter to Health Select Committee is being written asking for an inquiry into epilepsy-related deaths
  • A series of Parliamentary Questions are being tabled by Paula Sherriff MP, Ed Vaizey MP and other supportive MPs EG: Who is the Minister responsible for Epilepsy? Will Neurology / Epilepsy be prioritised in the upcoming NHS 10-year plan? 
  • The APPGE and supportive MPs will seek/push for a meeting with Secretary of State for Health and Social Care, to highlight the Summit recommendations and the need for Gov. to meet with the bereaved community and support those tackling epilepsy deaths.
  • Epilepsy-related deaths is to become a standing APPGE Agenda item. With SUDEP Action updating the APPGE on work relating to epilepsy-related deaths at future APPGE meetings – coordinating with other epilepsy organisations, supportive MPs and APPGE Chair in-between meetings to progress actions and achieve outcomes

 

SUDEP Action will also be working with a core group of supportive MPs in between APPGE meetings to drive forward work in making the Prevent21 Summit recommendations a reality.

The charity have expressed thanks to all the MPs who were able to attend the meeting or were able to send one of their team along; given the incredibly busy times in Government at the moment.

 

How can MPs help?

There are lots of ways MPs can help us in our fight to tackle epilepsy deaths. An important step in this is you, as their constituent, sharing your story and why they should help (MPs have strict rules that they can only help people in their area, so you building a positive relationship makes it much easier for us to work with MPs).

 

  1. MPs at the meeting received a briefing of key information. Could you pass this onto your MP and ask them to support SUDEP Action moving forward?
  2. Can they help table more questions to get answers from Government on key issues relating to epilepsy, epilepsy deaths and supporting bereaved families?
  3. Can they help make sure more people with epilepsy, their families & their clinicians receive key risk information, and that anyone who experiences an epilepsy death in their constituency, is told about us quickly after their loved one’s death? (We can provide press releases, summary information and leaflets to help them do this.)
  4. Can they help share the Prevent21 Summit report with their contacts locally and nationally who are involved in healthcare, and urge them to consider how they can work with SUDEP Action to improve outcomes for people with epilepsy?

 

*The APPGE is a group which meets 3-4 times a year in Parliament bringing together epilepsy organisations, clinicians, policy makers, MPs and those interested in the condition to hear of latest developments and work together to tackle issues related to epilepsy. It is chaired by Paula Sherriff MP and Epilepsy Action act at the Secretariat for the group. Find out more here: https://publications.parliament.uk/pa/cm/cmallparty/181121/epilepsy.htm