THREE people die from epilepsy each day in the UK
At least ONE death could have been avoided
Epilepsy Bereaved believes that 3 deaths per day are too many and the issue of SUDEP and other epilepsy-related deaths must be given a higher priority in the new parliament.
Our Manifesto for Life and Action Plan for MP’s are focused on the following four key priorities for prevention and management of avoidable deaths:
1. A care plan and case management for people with epilepsy who are not known to be seizure-free
Sudden Unexpected Death in Epilepsy has in the past been poorly understood but since the National Sentinel Audit 2002, our understanding has increased. The Audit revealed that; 42% OF DEATHS WERE POTENTIALLY AVOIDABLE.
Epilepsy is a long term condition and the outlook for most people is very good. Evidence suggests that with a clear understanding of epilepsy and good management of seizures, the risk of SUDEP can be minimized.
2. Communication of risk and ways to reduce risk
NICE guidelines recommend that SUDEP should be part of information to patients following a diagnosis of epilepsy.
It is important that people with epilepsy are allowed to live as normal a life as possible. However, individuals are entitled to know the facts about their condition. Information that epilepsy could potentially be fatal needs to be shared with people with epilepsy so that they can make decisions on a day to day basis about lifestyle and management of their condition.
There is also strong evidence to suggest that people with epilepsy and those affected by it want to be given information about SUDEP. People who are diagnosed with, for example, diabetes or heart problems, are made aware of the risk of death if their condition is not well managed. Epilepsy should be in this category and dealt with in the same way.
3. A national standard of investigation into epilepsy deaths and monitoring of deaths
There is a high level of post-mortem investigation into epilepsy-related deaths, but not all deaths are adequately investigated and reported. There is no national monitoring of epilepsy deaths however, the Coroners Act 2009 highlighted epilepsy as one area in which standards could be developed.
Research into the cause and prevention of SUDEP continues to be urgent. Eight years on from the Audit, our understanding of sudden death in epilepsy is greater, but we still need to reduce the number of such deaths.
We must continue to promote research into this neglected medical syndrome.
4. Access to specialist information and support
The majority of people who contact Epilepsy Bereaved are not aware that epilepsy can be fatal. Unlike other conditions such as Sudden Infant Death Syndrome which is well publicized, SUDEP may create an additional burden on the grieving family in explaining the death to the police, family, friends and the local community who may be ignorant of the condition.
Epilepsy Bereaved is the only organisation providing specialist SUDEP support and is currently funded mainly by bereaved families.
Included in the Coroners Act of 2009 are improvements in the provision of support to people who have been bereaved. Epilepsy Bereaved would like the implementation of these reforms to include information and training to those involved in the investigation of epilepsy deaths on referring people to the charity.
Action Plan for MP’s- Following the election, we want 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 following the summer recess
-Ask their PCT and SHA to respond to our Epilepsy Bereaved Briefing to Commissioners of Epilepsy Services .
For more information please contact:
Fiona McDonald: Epilepsy Bereaved Communications Manager
01554 778450 / 0798 558 7554 fiona.mcdonald@epilepsybereaved.org.uk
How EB supporters can help
The general election presented Epilepsy Bereaved with a great opportunity to put the prevention of epilepsy deaths higher up the political agenda. Newly elected Members of Parliament will be eager to be supportive as will those who have supported the charity in the past.
Epilepsy Bereaved is organising a meeting for MP’s in October and we need your help.
We appreciate that many of you have already contacted your MP over the years. It does make a difference and will continue to do so. As a result of your efforts, we have a large group of supportive politicians and we hope to add to this further.
Once again we ask if you could write to your MPs, telling them about your experience and inviting them to the meeting. Politicians get requests from charities on a daily basis which they do not always have time to act upon but receiving a letter from a constituent will get their attention.
For more information please contact Fiona on 01554 778450 or fiona.mcdonald@epilepsybereaved.org.uk
