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SUDEP Action Keeping in Touch Making Every Epilepsy Death Count January 2018

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SUDEP Action Keeping in Touch Making Every Epilepsy Death Count January 2018 Knowledge saves lives #Prevent21 Find out more at: www.sudep.org/prevent21 SUDEP Action Keeping in touch Making every epilepsy death count January 2018 Hello there ... I hope that you will feel uplifted by the good award of an MBE this month to Dr Rohit newsSUDEP we are able to share. The pages here Shankar. Recent coverage in Channel 4 are full of stories ofAc couragetion and inspirational News and Sky One has boosted the charity, people,Making as wellevery poems epilepsy and stories death of personalcount as we start 2018, with our innovations linked grief from those we support and work to falling deaths; at a time when the NHS and alongside. others are finally recognising SUDEP and epilepsy deaths as an issue requiring attention. We have set a date for our upcoming National Conference - a great chance Boosted by all this good news, we have for supporters to meet and hear what’s launched PREVENT21 our new campaign happeningSUDEP at the charity. focused on the 21 deaths a week, and what Action can be done to stop deaths and help families News about our successful appeal to fund a now. clinicalMaking trial every into a wearableepilepsy epilepsy death detectioncount device, has led directly to development Finally, with this newsletter, there is a funding for the next five years - the feedback survey. We are looking to revamp largest funding to a researcher working the newsletter and learn more about what on SUDEP in the UK since the charity was is important to you. Is it a new format? Or founded. Read this amazing story here! getting the news more regularly? We would love to hear from you. HM The Queen has also recognised the importance of our safety tools through the Jane Hanna OBE Chief Executive, SUDEP Action sudep.org President’s Reception A closer look at the MBRRACE Maternal event to launch - Deaths Report SUDEP Action’s event took place Epilepsy claims the lives of at least 21 Women with epilepsy are dying report (Mothers & Babies: Reducing on Friday 17 November, hosted by people each week in the UK, mostly in and unaware of the risks they face Risk through Audits and Confidential Wantage and Didcot MP Ed Vaizey, the the young and healthy, leaving families according to a new report. But what Enquiries across the UK) focused on charity’s President. broken and searching for answers. steps are being taken to reduce deaths epilepsy as one of its main conditions. in mothers with epilepsy? The Mayor of Wantage, the Deputy Ed Vaizey MP congratulated the charity 2,500 women with epilepsy become Lord Lieutenant for Oxfordshire on its achievements over the last 21 A recent enquiry into maternal deaths pregnant each year, a time which has (Mrs. Diana Bagnall) along with many years on behalf of people with epilepsy has shown significant failings in care for been flagged in research as being members of the local community and and families who have lost a loved one women with epilepsy during and after particularly risky for women with local businesses all attended in support to epilepsy. pregnancy; leading to many potentially epilepsy (Nashef, 2014). This is a time of Prevent21, a national appeal aiming “Leaving no stone unturned, while avoidable deaths. The MBRRACE which should be their happiest, yet for to raise over £1 million over the next also supporting bereaved families at some, it can prove fatal. four years to tackle these young the darkest time of their lives, this sudden deaths. small and determined team have been Our EpSMon app for people with working together alongside supportive epilepsy and our SUDEP and Seizure clinicians from the UK and beyond, with Safety Checklist for clinicians, as well a shared conviction - which is to shine a as resources such as the Pregnancy light on these sudden epilepsy deaths.” Toolkit created by Kim Morely (Epilepsy Specialist Midwife) are examples of how solutions to these problems can be made freely available and accessible now to those who need them. Jane Hanna CEO, spoke of the journeys taken by those supported by the charity and the charity itself. Jane highlighted the urgent need for action to be taken SUDEP Action partner with Epilepsy Action to reduce the number of potentially Australia for global awareness campaign (Pictured Jim Convery, Ed Vaizey MP, preventable epilepsy deaths. Cath Convery, Barrie Burns, Jan Burns) “It is ENTIRELY due to the strength and SUDEP Action has established an exciting new collaboration with, and Hosted by charity president, Ed Vaizey generosity of our bereaved community that such significant understanding funded by, Epilepsy Action Australia in MP, the event gave the SUDEP Action time for SUDEP Action Day 2017. This team a chance to showcase their work and progress has been made so far, and I can’t thank them enough for joining collaboration provides the most current over the last 21 years and highlight the information related to epilepsy-related key vision for the new appeal: us in taking this fight forward! At a time when the worst thing imaginable death to families across Australia. has happened to them, it shows just SUDEP Action’s new information how true the quote from Dante is ‘that Epilepsy affects approximately 250,000 pages on epilepsy risks, mortality Reducing deaths from Australians, and yet very few people and risk reduction. They will also be epilepsy and ensuring that from small sparks may burst a mighty flame’.” are aware that people with epilepsy distributing specially adapted versions critical lifesaving knowledge and are at risk of Sudden Unexpected of our information leaflets to clinicians, awareness of risk management Death from Epilepsy (SUDEP). families, and people with epilepsy is brought to the attention More information about the campaign and across Australia; starting with SUDEP of hundreds and thousands The first phase of this project has Explained for Health Professionals and of people. how to get involved can be found at www.sudep.org/prevent21. seen Epilepsy Action Australia adopt Reducing Risks leaflets. 2 3 The choker-style necklace that could save MPs express support for SUDEP Action and hundreds of lives their bereaved families at Westminster event SUDEP Action Chief Executive, Jane help drive this issue forward, and help A tiny wearable device that resembles be available on the NHS to every young Hanna OBE, attended an event (17 overcome some of the barriers faced in a necklace could in the future save person that needs it within six years. Oct) with MPs and Ministers held getting information and tools to people the lives of hundreds of young people at Portcullis House, Westminster. with epilepsy, their families, and each year. Convulsive night-time seizures – where Organised by Ed Vaizey MP (pictured), clinicians. As well as, helping improve the person’s limbs shake and they brought together a dedicated group of signposting to support services The choker-style gadget, which is worn lose consciousness – can be the most SUDEP Action supporters, clinicians, following an epilepsy death. We look around the neck at night, alerts a dangerous and are one of many known and MPs to highlight the issues faced forward to working closely with these nearby parent, partner or friend, that risk factors associated with sudden by the Charity and urge MPs to do what MPs and sharing news of how this their loved-one is suffering from a life- death. they could to help us tackle this issue develops over the coming months. threatening event, such as a pause in head-on and prevent future epilepsy their breathing (apnoea) or a change in Each year, 600 British people die as a deaths. SUDEP Action wish to thank all our how their heartbeats. result of SUDEP – Sudden Unexpected supporters who contacted their MP Death in Epilepsy – more than four The one-hour event saw 20 MPs (some about this event, as well as the families By sending a wireless signal to an times the number of babies who suffer of which attended at the request of and clinicians who supported us at the alarm, the carer has enough time cot death. their constituents who support SUDEP event, and spoke so powerfully during to put the patient into the recovery Action), hear about the devastating the meeting: Jan, Barrie and Izzie position – which can be enough to kick- Most at risk from SUDEP are young impact of epilepsy deaths first hand, Burns, Roger and Sandie Scrivens, start breathing again - to administer people aged between 20 and 40, and as well as hearing about the amazing Michelle Samuel, Professor Leone CPR, or call for help. include those who leave home for work achieved by the charity over the Ridsdale and Dr Gabriella Wojewodka. college, university or work, and women last 21 years. Bereaved families at SUDEP Action, who stop epilepsy medication during Jane Hanna (also pictured) who led the launched a fundraising campaign for the pregnancy. Bereaved families who crowdfunded meeting commented, “We know our device at a Downing Street reception, early trials of a SUDEP alert device, major challenge is to the taboo that hosted by Samantha Cameron in 2014 Early trials, led by Professor Esther which has led to funding of 2 million still persists in - hope it will prevent other parents Rodriguez-Villegas at Imperial College Euros to a research team, announced the 21st century from suffering the nightmare of losing London, along with researchers at this news to MPs. They also highlighted towards a child. University College London, have that SUDEP Action had solutions these deaths. yielded positive results among a available to save lives now, that they Families Two million euros have been granted sample of apnoea sufferers.
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