THREE people die from epilepsy each day in the UK
At least ONE death could potentially be avoided
Please help to give Sudden Unexpected Death in Epilepsy and other epilepsy-related deaths a higher priority in parliament.
Our Epilepsy Bereaved Briefing 2011 is 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.
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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.
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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.
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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.
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Join our campaign and help prevent epilepsy deaths
Some of our supporters and MPs at the meeting
Sudden Unexpected Death in Epilepsy was pushed higher up the political agenda at our meeting in parliament on 16th February.
Thanks to your support, over 80 MPs responded positively to our request to attend the meeting and to our campaign on the prevention of avoidable deaths from epilepsy.
The MPs heard that between 2002 and 2009 there have been 9189 epilepsy related deaths of which 3859 could have potentially been avoided. They were enthusiastic about supporting Epilepsy Bereaved and our work to prevent avoidable epilepsy-related deaths.
Those present agreed that just talking about epilepsy mortality is not enough and that we must do all that we can to enable risk management and communication of risk in epilepsy and to learn more about these deaths through research and involvement of the bereaved.
Several MPs have already agreed to raise questions in parliament and one has offered to lead on an adjournment debate on the prevention of avoidable epilepsy deaths.
Our campaign continues and we need your help!
The success of the campaign thus far has been due to the support we have received from our members.
Questions are being asked at the highest possible level about SUDEP and other epilepsy-related deaths and Epilepsy Bereaved is working with the government on the prevention of deaths which could be avoided.
The MPs who came to the meeting agreed to support the charity in a number of ways but we need your help to ensure that more MPs are signed up to our campaign.
We will be contacting the MPs who have already received letters or emails from our members but need to enlist the support of as many other MPs as possible to really make a difference.
If you have not contacted your MP before and would like to, please contact Fiona McDonald Fiona@eb-team.org.uk 01554 778450 as we have resources to help you do this and information to send to your MP.
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