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SUDEP Action welcomes commitment to tackle avoidable deaths made in House of Commons epilepsy debate

SUDEP Action welcomes commitment from Government and MPs to do all they can to avoid the tragedy of avoidable deaths during a debate on epilepsy in the House of Commons on 26 February 2015. It called on the government to address major issues facing people with epilepsy and the Government responded by saying it would do all it could.

The debate was led by outgoing MP Laura Sandys, former chair of the All Party Parliamentary Group on Epilepsy, and Cheryl Gillan MP for Chesham and Amersham. Opening the debate, Laura Sandys spoke of her own epilepsy and her experiences during her work as an MP to raise awareness of the issues facing those living with epilepsy. She stated that ‘addressing stigma is at the heart of the treatment, care and, frankly, funding for epilepsy. Too often it is swept under the carpet’.

Following her plea to make the voices of those with epilepsy heard, MPs from around the country spoke of the moving experiences of those in their constituencies who have been affected by epilepsy due to access to treatment, stigma or bereavement.

During the debate, the voice of SUDEP Action and our supporters was heard loud and clear, making a notable impact on those present thanks to the MPs who demonstrated their support and spoke on our behalf. 

Raising awareness of epilepsy risks

Many MPs expressed concerns about the risks associated with epilepsy and the need for improvements to be made in this area – one of the key messages expressed in our MP briefing paper. 

Martin Horwood, MP for Cheltenham spoke on behalf of SUDEP Action of the need for an increased focus on risk to be implemented in General Practice so screening for risks becomes part of the epilepsy care pathway.
In sharing the story of Emily Sumaria, who had previously done work experience for him prior to her death from SUDEP in 2013, he was able to highlight the importance of people with epilepsy being told of their risks; a key priority underpinning our Call for Openness campaign. His closing statement summed up the importance on this, stating ‘We as policy makers have little power to offer much comfort to families such as Emily’s, but if we can take action that saves even one more life from SUDEP, it would matter a great deal.”

He also spoke movingly about the impact of these deaths on families and the support that SUDEP Action could provide after a death. Reminding that any care pathways needs to inform families about the importance of receiving specialised support.

Shadow Minister for Health Andrew Gwynne MP further supported this by encouraging that Ministers look at improving the medical education of health professionals (and not just among people with epilepsy) in order to improve the quality of care regarding risk management and monitoring.  

The Minister of State for the Department of Health, Norman Lamb also highlighted the importance of ‘red-flagging’ for risks, something he is very keen to introduce. The Department of health is considering introducing such a system for women of child-bearing age who need to consider how to manage their safety in pregnancy, due to the potential of increased risks to the unborn child if they are on some medications. SUDEP Action hopes to be able to discuss this further with the Minister in order to demonstrate the need for a system that red-flags people with epilepsy at increased risk of fatality, as recommended in the recent Epilepsy Deaths Review and the British Medical Journal.    

Promoting the need to reduce avoidable epilepsy-related deaths

The potential avoidability of some epilepsy deaths was another core focus of the debate. Valerie Vaz MP, the new chair or the All Party Parliamentary Group for Epilepsy, reminded MPs that according to SUDEP Action’s National Audit of Epilepsy Deaths in 2002, 42% of epilepsy deaths were potentially avoidable but that improvements could be made across various areas of epilepsy care to reduce this. 

Steve Baker MP drew attention to this during his account on behalf of a recently bereaved family, asking for answers as to why some deaths are not avoided when steps could be taken to prevent them. He spoke of Jessica Monks, an 18 year old with epilepsy who had recently committed suicide. The family had told Steve Baker MP that as Jessica’s risk rapidly worsened, that the wholly inadequate response from neurology and mental health services to her need for support with her epilepsy, medications and a new and rapidly escalating mental health problem, left her at high risk.

A number of the MPs also spoke of the need to address this issue and it formed a significant focus in Norman Lamb’s closing statements: “We all agree that we owe it to those two girls to do everything we can to improve the experiences of people with epilepsy, and to avoid the tragedies of that sort happening. It is important to raise awareness, not only among the public but among clinicians, of the condition and how best to respond to it.”

He also paid tribute to the work done by the epilepsy patient organisations, paying particular mention to SUDEP Action. He commented on the important work done by the charity and how The Epilepsy Deaths Register provides the potential to ‘help us understand why sudden unexpected deaths occur, and how we can prevent them from occurring in the future.’

Laura Sandys, outgoing Chair of the APPGE ended the debate by calling on the Government to support a national care pathway to reduce by 400 the unnecessary deaths caused by SUDEP each year.

Jane Hanna , CEO of SUDEP Action said: “SUDEP Action will support this call and the calls from other MPs for red-flagging of risk and improved education. The National Audit found 400 deaths from all causes, including SUDEP, were potentially avoidable. We have funded population-based research and The Epilepsy Deaths Register and have the expertise to support any national programme to combat deaths” 

Samantha Ashby, SUDEP Action’s Policy & Development Officer said; “Thank you to all our supporters who have helped ensure the voices of those bereaved by epilepsy were heard in the lead up to and during the debate. This debate was a great event to publically raise awareness, but is also just one element of a much bigger and on-going campaign to reduce the number of epilepsy deaths & raise awareness of epilepsy risks. By continuing to support SUDEP Action, we can make sure that our voices only get louder”. 

See below for the Epilepsy debate transcript:

PDF icon Parliamentary epilepsy debate transcript

See below the SUDEP Action briefing paper to MPs

PDF icon MP briefing on behalf of SUDEP Action