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16 March 2016

MPs and epilepsy campaigners join forces to end avoidable deaths

Join our online campaign  Speak up for epilepsy and help to stop avoidable deaths in epilepsy.

More than 1300 people have emailed their MPs in response to Epilepsy Society's campaign to stop needless deaths caused by epilepsy.

And one MP has raised issues around premature mortality in parliament, asking the government in a written question whether it intends to commission a new national clinical audit into the condition which could provide vital information to help tackle avoidable deaths.

Online campaign

Epilepsy Society launched its online campaign earlier this month calling on health secretary, Jeremy Hunt to put a stop to the number of needless deaths caused by epilepsy.

Around 500,000 people in England have  this condition, and although figures show that epilepsy carries with it a greater risk of premature death, over a third (39 per cent) of those deaths are thought to be avoidable through better care, treatments and services. This result was found in the National Audit that took place in 2002.

Epilepsy Society believes that a new clinical audit will help identify regional disparities in epilepsy care  and increase understanding of current weaknesses in care management so that resources can be directed where needed.

Parliamentary questions

MP for Coventry South Jim Cunningham asked  the secretary of state for health in a written parliamentary question, whether he had plans to commission a national clinical audit on the number of avoidable deaths in epilepsy.

Replying on behalf of the secretary, public health minister Jane Ellison, MP, said there was currently no plan for a specific morbidity audit for all cases of epilepsy, but that there were several relevant audits and reviews from the National Clinical Audit and Patient Outcomes Programme.

These included an audit for paediatric epilepsy which is being re-commissioned this year and is being managed by the Royal College of Paediatrics and Child Health (RCPCH); the 2013 review report into cases of mortality and prolonged seizures in children and young people with epilepsies, also managed by the RCPCH; and the recently commissioned National Mortality Case Record Review; Programme for England and Scotland.

Life outcomes

Mr Cunningham also asked what steps the department of health was taking to improve life outcomes for people with epilepsy. Jane Ellison replied that NHS England was responsible for securing high quality outcomes for people with long term conditions, including epilepsy.

She said that prompt diagnosis, treatment and seizure control, in line with guidance provided by the National Institute for Health and Care Excellence (NICE)  were key to improving outcomes for people with epilepsy.

Join our online campaign  Speak up for epilepsy and help to stop avoidable deaths in epilepsy.


Call for new audit

Emily Thornberry, MP, also added her weight to the campaign. After receiving several emails from campaigners, she wrote to Jeremy Hunt.

'Several constituents have recently contacted me calling for an audit of epilepsy deaths,' she said. 'Fifteen years ago, NICE commissioned the National Sentinel Clinical Audit which looked at all epilepsy deaths between September 1999 and August 2000.

'The audit identified at least one problem with the healthcare of over half the adult cases examined. I would hope that there has been progress on ensuring that everyone who suffers a seizure of any kind is offered appropriate care, and I would hope that this has led to a reduction in avoidable deaths.

'I hope that you will now consider commissioning a new audit, looking at current data for epilepsy-related deaths, so that any weaknesses or delays in care which might lead to preventable deaths can be identified, and best practice can be shared.'

Get involved

Head of stakeholder relations at Epilepsy Society, Lucia von Bredow said the response to the campaign had been overwhelming  and illustrated the very real concerns of those who have lost someone to epilepsy or who know that they, or a loved one, may be at an increased risk with their epilepsy.

She said: 'Every letter sent to an MP brings us one step closer to ending avoidable deaths in epilepsy. The tremendous response from the general public proves that people want to speak up for epilepsy – and the interest we have had from MPs shows that they are listening. There are many more ways you can get involved directly with this campaign: get in touch to help us reach our goal”.

You can read the full written questions and answers in Parliament here.

Join our online campaign  Speak up for epilepsy and help to stop avoidable deaths in epilepsy.

Related articles

Blog: Epilepsy Society policy advisor Finn O'Dwyer discusses why a new national clinical audit is so necessary.



If you have lost someone to SUDEP and would like to talk to a bereavement counsellor, please call SUDEP Action on 01235 772852.