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14 December 2017

Epilepsy Society welcomes government commitment to end avoidable deaths

Epilepsy Society's chief executive Clare Pelham has welcomed an initiative by health secretary Jeremy Hunt to  make the NHS the first healthcare system in the world to publish data around avoidable deaths.

Last year, the leading epilepsy charity ran a national campaign calling on Mr Hunt to end needless deaths among epilepsy patients across the UK.

There are more than 500,000 people in the UK with epilepsy. Every year, around 1,000 die due to their condition and although epilepsy is known to carry a greater risk of premature death,

39 per cent of those deaths are thought to be avoidable.

Losing a loved one to epilepsy is rare but can happen. There are many ways to reduce risk and you can read about them here.

Shortcomings contributing to needless deaths

Clare Pelham, chief executive at the charity said: 'We know that strong and compelling data can help us to identify shortcomings in our healthcare system that are contributing to avoidable deaths.

'By highlighting these we can begin to focus effort and resources to the greatest effect.

'We are delighted that Jeremy Hunt is responding in this positive and constructive way to the evidence we have supplied. We look forward to working with him on implementation so that the NHS is truly a world leader on learning and improving.'

Postcode lottery

Figures from a National Audit in 2002 showed that a person with epilepsy was two to three times more likely to die than someone without the condition.

And data collected from the Office of National Statistics from 2009-2013, revealed that rates of premature death vary vastly within England and create a postcode lottery. For example, someone with epilepsy is 49 per cent more likely to die prematurely in West Yorkshire than in Cheshire.

Connor Sparrowhawk

Today the Department of Health said that there are up to 9,000 deaths in hospitals each year caused by failings in NHS care. These figures relate to all illnesses and condition, but one of the two cases highlighted by the government is that of 18-year-old Connor Sparrowhawk who had epilepsy and died in the care of Southern Health NHS Foundation Trust at Slade House in Oxford. The trust has accepted that his death was 'entirely preventable.'

The Department for Health says it wants to ensure the NHS learned lessons from every case.

There is no standard definition of an avoidable death and each hospital trust will make its own judgment.

The data released by the organisations will include details of reviews and investigations into deaths, and information on any action taken as a result.

By the end of 2017, it is anticipated that some 170 out of 223 trusts will publish data on deaths they believe could have been prevented.

Last year, more than 1300 people emailed their MP as part of Epilepsy Society's campaign calling for an audit of epilepsy deaths and asking Jeremy Hunt to bring an end to the number of needless deaths caused by epilepsy.

Talking about epilepsy

Losing a loved one to epilepsy is rare but can happen. Not all epilepsy deaths are avoidable, though some may be.  If you would like to talk to a bereavement counsellor, you can call SUDEP Action on 01235 772852. Or to talk about concerns around epilepsy and premature mortality, please call Epilepsy Society’s helpline on 01494 601 400.



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