Epilepsy Bereaved (EB) has been lobbying since 1997 to influence policy makers throughout the UK.
Our campaigns have involved petitions signed by 600 health professionals as well as 9,000 members of the public; written questions in the House of Commons, Scottish Parliament and the National Assembly for Wales; an epilepsy debate in parliament and meetings with ministers and civil servants.
In Wales, EB was part of the implementation group along with the All Wales Epilepsy Forum, which has resulted in the groundbreaking Epilepsy Plan for Wales
Since the publication of the National Sentinel Audit 2002 that Epilepsy Bereaved led in 2002, our understanding of sudden death in epilepsy is greater, but we still need to reduce the number of such deaths.
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We have been successful in bringing epilepsy deaths ‘out of the shadows’ but there is still much more we must do;
There are 3 epilepsy deaths every day in the UK
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Epilepsy Bereaved exists:
To raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and support families affected by it
For SUDEP to become properly understood and acknowledged- that the risks of SUDEP and how to manage them are known and understood by people with epilepsy and their carers
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Epilepsy Bereaved campaigns for:
Research into both the cause and prevention of SUDEP
Improved access to specialised support service for people following the death of a loved one
Improved standards for the investigation of epilepsy related deaths
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We aim to influence clinicians, health managers and politicians to implement the service changes needed to reduce risks of Sudden Unexpected Death in Epilepsy and other epilepsy related deaths.
Our Manifesto for Life and Action Plan for MP’s are focused on the prevention and management of avoidable deaths.
We are asking our MP’s to;
Seek a response from government on avoidable deaths from epilepsy
Support Epilepsy Bereaved- The charity will be organising a meeting for MP’s in October
Ask PCT’s and SHA’s to respond to the Epilepsy Bereaved Briefing to Commissioners of Epilepsy Services
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You can help us in many ways, please contact Fiona McDonald 01554 778450 / 01235 772 850 fiona.mcdonald@epilepsybereaved.org.uk for more information.
