News and Campaigns
January 2012
Epilepsy Bereaved launch partnership with Epilepsy Society
November 2011
Epilepsy Bereaved speaks up during NHS reforms
European Declaration on Epilepsy supported by 459 MEPs
Epilepsy Bereaved is delighted that a European Written Declaration on Epilepsy has passed during the plenary session in the EU Parliament in Strasbourg on 15th September.
The Declaration on Epilepsy will be officially communicated from the Parliament to the Commission and to the Parliaments of the EU Member States.
National Statement on SUDEP Update
Epilepsy Bereaved presented the National Statement on SUDEP to the All Party Parliamentary Group on Epilepsy on July 5th. The Statement was the outcome of a Westminster reception event held earlier in the year and attracted support from some 80 MPs. It has been signed by clinical and research leaders including the President of the International League against Epilepsy (UK branch) and President of ILAE GPs with a specialist Interest Group.
October 2011
‘Carolyn’s Secret’ launched in Liverpool
The Valley Community Theatre in Liverpool produced an awareness film to help raise awareness of epilepsy and SUDEP.
September 2011
Epilepsy Bereaved meets with Ministry of Justice ahead of consultation on Charter for the Bereaved
Epilepsy Bereaved met with the Ministry of Justice over the summer to press the case for coroners to tell bereaved families about specialist medical organisations set up to support families after a medical death.
August 2011
The SUDEP Global Conversation Continues
Inquiry calls for people with epilepsy to be told about SUDEP
May 2011
Research shows that risk of SUDEP could be reduced
Support the National Statement on SUDEP
April 2011
GP information could prevent some epilepsy deaths
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February 2011
MPs support SUDEP awareness and the prevention of epilepsy deaths
News from our meeting in parliament on 16th February
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December 2010
Epilepsy Bereaved Research Update
Epilepsy Bereaved recently supported a research study at King’s College, London utilising data from General Practitioners to evaluate trends in epilepsy mortality and risk factors for mortality in epilepsy. This study showed that mortality in epilepsy may be increasing in the UK. There was evidence that patients who do not receive repeat prescriptions for anticonvulsant drugs, who have depression, recent injuries or alcohol problems may be at increased risk or mortality. However, patients who remain seizure free over 12 months are at lower risk.
The charity is funding a further study at King’s College, London to look at anti-convulsant use in epilepsy and to specifically compare anticonvulsant drug use and prescription use between people with epilepsy who died and those who did not die between 1992 and 2007. The research will contribute to identifying people who may not be able to access good anticonvulsant therapy or who do not receive optimal quality of care for their epilepsy.
The second and third research studies to be undertaken by Professor Polkey and Dr Lina Nashef will involve an audit on deaths and Sudden Unexpected Death in Epilepsy (SUDEP) in epilepsy patients undergoing Vagal Nerve Stimulators and an audit on mortality following epilepsy surgery.
Epilepsy Bereaved & King’s SUDEP Research Initiative
November 2010
Epilepsy Bereaved challenge misleading information on epilepsy deaths
EB has contacted the Guardian newspaper following an article which appeared on 30th November that gave misleading information about epilepsy deaths in the UK.
Australian research improves our understanding of some Sudden Unexpected Deaths in Epilepsy
Bereaved families and epilepsy experts herald Australian research as a step forward in understanding some Sudden Unexpected Deaths in Epilepsy.
Sudden unexpected death in epilepsy (SUDEP) is a condition that kills about 150 Australians a year. Now researchers from the Centenary Institute at the University of Sydney have discovered the reason behind some of the deaths.
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The inquiry, which commenced on 1st November in Dundee is focusing on the deaths of 19 year old Erin Casey from Leven who died in her sleep during her sixth week at St Andrews University in 2006, and Christina Ilia who was only two weeks away from her 16th birthday when she died in her sleep at her home in Forfar, in March 2009.
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Understanding Risk – Information for people with epilepsy and health professionals
Our new Be Safe Reduce Risk leaflet offers an introduction to how someone with a diagnosis of epilepsy can better understand their background risk, how to manage it and put it into perspective.
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18th October
New in-depth investigation published into Sudden Unexpected Death in Epilepsy (SUDEP)
Sudden Unexpected Death in Epilepsy Forensic and Clinical Issues
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Help Epilepsy Bereaved shape the future at our national conference
We invite you to join us for our national conference at Dunchurch Park Hotel nr. Rugby on Saturday 6th & Sunday 7th November 2010.
Our members have always been at the heart of the charity and have driven us forward. As a Charity, we use your feedback to help shape the future and we hope you will share your views with us over the weekend.
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8th October 2010
Read Jane Hanna’s BBC Online article;
‘Cutting NHS targets could save epilepsy lives’
BBC Online invite people to write a special report and, Epilepsy Bereaved Director Jane Hanna has contributed to this.
Jane put a question to the new Secretary of State for Health earlier this year to which he acknowledged that national targets had ignored some conditions – now he promises a relaxation in the use of targets and puts patient safety at the heart of the NHS.
As you will see in the article, Jane is clear that a policy shift away from number-crunching to a focus on patient safety is positive news for people with epilepsy and that the government needs to look seriously at the potential for achieving more positive outcomes for patients and a more cost-effective health service.
Please post a comment on the page.
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August 2010
New report concludes that Epilepsy Specialist Nurses play a vital role in the management plans for people with epilepsy and where nurses exist, they are central to the quality of care provided.
EpilepsySpecialistNurse Report 2010
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July 2010
John Inverdale presents Radio 4 appeal for Epilepsy Bereaved
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Care services Minister and Former England Bowler Support the Epilepsy Bereaved Appeal
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Epilepsy Bereaved funds three new research studies
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Royal College of Pathologists launch National Pathology Week
June 2010
Epilepsy Bereaved questions Secretary of State for Health
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Support us to reduce risk and prevent deaths from Epilepsy
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For campaign and news enquiries contact Fiona McDonald Communications Manager fiona@eb-team.org.uk 01554778450 / 07985587554
