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.
A debate and vote on electoral reform interfered with the numbers who were able to attend and in the end 11 MPs came.
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.
Ellie
Remembering Ellie
Bruce and Linda Davis spoke at the meeting about their 18 year old daughter Eleanor who died on 9th February 2010 whilst at university in Bournemouth.
They gave the MPs an insight into the way in which SUDEP affects a family and the reason why we must do all we can to prevent unnecessary deaths.
Epilepsy Bereaved is extremely grateful to Bruce and Linda for sharing Eleanor’s story at the meeting, we understand how difficult it was and we appreciate it very much.
John Cryer Member of Parliament for Leyton and Wanstead said;
“Having three children myself, I can’t imagine how hard it must be to cope with the loss of a child. After meeting Ellie’s parents, Bruce and Linda, I would urge anyone who knows someone with epilepsy to make them aware of SUDEP and this campaign”.
Fellow MP Mike Gapes Member of Parliament for Ilford South issued the following in support of the family;
“The death of young Ellie brings home the tragic costs of this illness in human lives. This is an important campaign and it deserves support from the public and the NHS.”
Professor Stephen Brown
Professor Stephen Brown spoke about the need for further research into the prevention of epilepsy deaths.
Professor Brown is a neuropsychiatrist with a national and international reputation in the field of epilepsy, epilepsy services, research and education. He was one of the first epilepsy specialists to raise awareness of SUDEP.
Director of Epilepsy Bereaved Jane Hanna who was awarded an OBE last year for her services to bereaved families outlined the measures necessary to prevent deaths.
“The risks of SUDEP are still not fully acknowledged. This means that some people with epilepsy are still at risk of dying suddenly, prematurely and unnecessarily. Our meeting in Parliament will help put the issue of epilepsy deaths higher up the agenda and we appreciated having Bruce and Linda there to speak to the MPs. It was important for the politicians to understand how families are affected by an epilepsy-related death and that many of these deaths could potentially be avoided’
Mr Ed Vaizey with Prof Brown and Jane Hanna
Minister for Culture Ed Vaizey had been planning to chair the meeting but had to attend an urgent meeting in parliament. Mr Vaizey managed to call in at the meeting to offer his continued support and gave the following statement;
“Sudden Unexpected Death in Epilepsy claims the lives of too many people in the UK and it is shocking to know that many of these deaths could be prevented. I know from working with Epilepsy Bereaved that they have not only had an impact on national and international research and clinical practice, but that core to their work has been support to ordinary people whose lives have been devastated by SUDEP including many families in Oxfordshire. I wish the meeting very success and will continue to support the charity in their work”
Nicola Blackwood MP (left)
We are very grateful to Oxford West and Abingdon MP Nicola Blackwood who stepped in at the last minute to chair the meeting. Nicola said;
“Since being elected, I have become aware of the marvellous work that Epilepsy Bereaved does in supporting families who have lost a loved one to epilepsy and raising awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and other seizure-related deaths.
There are three deaths from epilepsy each day in the UK and at least one of those deaths could potentially be avoided. More must be done to prevent these deaths from occurring and lives being lost unnecessarily.
I was honoured to chair this meeting and to help bring epilepsy deaths out of the shadows and higher up the political agenda”
Home Secretary Theresa May
Home Secretary Theresa May supported the Epilepsy Bereaved meeting;
“I strongly welcome the work of Epilepsy Bereaved in raising awareness of Sudden Unexpected Death in Epilepsy. This is a condition that affects many people in the UK, and Epilepsy Bereaved clearly do valuable work in supporting those who have been bereaved, as well as in conducting research and liaising with health bodies. I am sorry that I am not able to attend the meeting in Parliament on 16th February, but I am sure that it will be a useful event in further raising awareness about this important issue.”
Sir Menzies Campbell MP
Sir Menzies Campbell MP was unable to attend the meeting but issued the following statement;
