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

Knowledge saves lives #Prevent21 Find out more at: <a href="/goto?url=http://www.sudep.org/prevent21" target="_blank">www.sudep.org/prevent21 </a>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 news we are able to share. The pages here Shankar. Recent coverage in Channel 4 are full of stories of courage and inspirational News and Sky One has boosted the charity, people, as well poems and stories of personal 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 happening at the charity. focused on the 21 deaths a week,and what can be done to stop deaths and help families News about our successful appeal to fund a now. clinical trial into a wearable epilepsy detection 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 <ul style="display: flex;"><li style="flex:1">founded. Read this amazing story here! </li><li style="flex:1">getting the news more regularly? We would </li></ul>love to hear from you. HM The Queen has also recognised the importance of our safety tools through the Jane Hanna OBE Chief Executive, SUDEPAction sudep.org A closer look at the MBRRACE Maternal Deaths Report President’sReception event to launch - Epilepsy claims the lives of at least 21 people each week in the UK, mostly in the young and healthy, leaving families broken and searching for answers. SUDEP Acꢀon’s event took place on Friday 17 November, hosted by Wantage and Didcot MP Ed Vaizey, the charity’s President. Women with epilepsy are dying report (Mothers & Babies: Reducing and unaware of the risks they face Risk through Audits and Confidenꢁal according to a new report. But what Enquiries across the UK) focused on steps are being taken to reduce deaths epilepsy as one of its main condiꢁons. in mothers with epilepsy? Ed Vaizey MP congratulated the charity on its achievements over the last 21 years on behalf of people with epilepsy and families who have lost a loved one to epilepsy. The Mayor of Wantage, the Deputy Lord Lieutenant for Oxfordshire (Mrs. Diana Bagnall) along with many members of the local community and local businesses all aꢀended in support of Prevent21, a naꢁonal appeal aiming to raise over £1 million over the next four years to tackle these young sudden deaths. 2,500 women with epilepsy become A recent enquiry into maternal deaths pregnant each year, a ꢁme which has has shown significant failings in care for been flagged in research as being women with epilepsy during and aﬅer parꢁcularly risky for women with pregnancy; leading to many potenꢁally epilepsy (Nashef, 2014). This is a ꢁme avoidable deaths. The MBRRACE which should be their happiest, yet for some, it can prove fatal. “Leaving no stone unturned, while also supporꢀng bereaved families at the darkest ꢀme of their lives, this small and determined team have been working together alongside supporꢀve clinicians from the UK and beyond, with a shared convicꢀon - which is to shine a light on these sudden epilepsy deaths.” Our EpSMon app for people with epilepsy and our SUDEP and Seizure Safety Checklist for clinicians, as well as resources such as the Pregnancy ToolkitcreatedbyKimMorely(Epilepsy Specialist Midwife) are examples of how soluꢁons 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 acꢁon to be taken to reduce the number of potenꢁally preventable epilepsy deaths. SUDEP Action partner with Epilepsy Action Australia for global awareness campaign (Pictured Jim Convery, Ed Vaizey M P , Cath Convery, Barrie Burns, Jan Burns) SUDEP Acꢁon has established an “It is ENTIRELY due to the strength and generosity of our bereaved community that such significant understanding and progress has been made so far, and I can’t thank them enough for joining us in taking this fight forward! At a ꢀme when the worst thing imaginable has happened to them, it shows just how true the quote from Dante is ‘that from small sparks may burst a mighty flame ’ .” exciꢁng new collaboraꢁon with, and Hosted by charity president, Ed Vaizey MP, the event gave the SUDEP Acꢁon team a chance to showcase their work over the last 21 years and highlight the key vision for the new appeal: funded by, Epilepsy Acꢁon Australia in ꢁme for SUDEP Acꢁon Day 2017. This collaboraꢁon provides the most current informaꢁon related to epilepsy-related death to families across Australia. SUDEP Acꢁon’s new informaꢁon Epilepsy affects approximately 250,000 pages on epilepsy risks, mortality Australians, and yet very few people and risk reducꢁon. They will also be are aware that people with epilepsy distribuꢁng specially adapted versions are at risk of Sudden Unexpected of our informaꢁon leaflets to clinicians, Reducing deaths from epilepsy and ensuring that criꢀcal lifesaving knowledge and awareness of risk management is brought to the aꢁenꢀon of hundreds and thousands of people. <ul style="display: flex;"><li style="flex:1">Death from Epilepsy (SUDEP). </li><li style="flex:1">families, and people with epilepsy </li></ul>More informaꢁon across Australia; starꢁng with SUDEP about the campaign and how to get involved can be found at <a href="/goto?url=http://www.sudep.org/prevent21" target="_blank">www.sudep.org/prevent21</a>. The first phase of this project has Explained for Health Professionals and seen Epilepsy Acꢁon Australia adopt Reducing Risks leaflets. 23The choker-style necklace that could save MPs express support for SUDEP Action and their bereaved families at Westminster event hundreds of lives SUDEP Acꢁon Chief Execuꢁve, Jane help drive this issue forward, and help Hanna OBE, aꢀended an event (17 overcome some of the barriers faced in Oct) with MPs and Ministers held geꢂng informaꢁon and tools to people at Portcullis House, Westminster. with epilepsy, their families, and Organised by Ed Vaizey MP (pictured), clinicians. As well as, helping improve brought together a dedicated group of signposꢁng to support services SUDEP Acꢁon supporters, clinicians, following an epilepsy death. We look and MPs to highlight the issues faced forward to working closely with these by the Charity and urge MPs to do what MPs and sharing news of how this they could to help us tackle this issue develops over the coming months. head-on and prevent future epilepsy A ꢀny wearable device that resembles be available on the NHS to every young a necklace could in the future save person that needs it within six years. the lives of hundreds of young people each year. Convulsive night-ꢁme seizures – where the person’s limbs shake and they The choker-style gadget, which is worn lose consciousness – can be the most around the neck at night, alerts a dangerous and are one of many known nearby parent, partner or friend, that risk factors associated with sudden their loved-one is suffering from a life- death. threatening event, such as a pause in their breathing (apnoea) or a change in Each year, 600 Briꢁsh people die as a deaths. SUDEP Acꢀon wish to thank all our supporters who contacted their MP how their heartbeats. result of SUDEP – Sudden Unexpected Death in Epilepsy – more than four The one-hour event saw 20 MPs (some about this event, as well as the families of which aꢀended at the request of and clinicians who supported us at the their consꢁtuents who support SUDEP event, and spoke so powerfully during Acꢁon), hear about the devastaꢁng the meeꢀng: Jan, Barrie and Izzie impact of epilepsy deaths first hand, Burns, Roger and Sandie Scrivens, as well as hearing about the amazing Michelle Samuel, Professor Leone work achieved by the charity over the Ridsdale and Dr Gabriella Wojewodka. last 21 years. By sending a wireless signal to an ꢁmes the number of babies who suffer alarm, the carer has enough ꢁme cot death. to put the paꢁent into the recovery posiꢁon – which can be enough to kick- Most at risk from SUDEP are young start breathing again - to administer people aged between 20 and 40, and <ul style="display: flex;"><li style="flex:1">CPR, or call for help. </li><li style="flex:1">include those who leave home for </li></ul>college, university or work, and women Jane Hanna (also pictured) who led the Bereaved families at SUDEP Acꢁon, who stop epilepsy medicaꢁon during launchedafundraisingcampaignforthe pregnancy. Bereaved families who crowdfunded meeꢁng commented, “We know our early trials of a SUDEP alert device, major challenge is to the taboo that which has led to funding of 2 million sꢀll persists in device at a Downing Street recepꢁon, hosted by Samantha Cameron in 2014 Early trials, led by Professor Esther - hope it will prevent other parents Rodriguez-Villegas at Imperial College from suffering the nightmare of losing London, along with researchers at Euros to a research team, announced th e 2 1s t c entury this news to MPs. They also highlighted towards that SUDEP Acꢁon had soluꢁons these deaths. <ul style="display: flex;"><li style="flex:1">a child. </li><li style="flex:1">University College London, have </li></ul>yielded posiꢁve results among available to save lives now, that they Families awanted aꢀenꢁon drawn to what could were hugely Two million euros have been granted sample of apnoea sufferers. A further from the European Research Council 50 people with epilepsy are set to take (ERC) to carry out research towards part in the program this year, thanks to the creaꢁon of a wearable device, to the crowdfunding campaign by SUDEP pick up and alert to life-threatening Acꢁon and their bereaved family signals. A device which they hope will community. be done to help, and called for support encouraged for an enquiry into avoidable deaths. by the strong support we Many of the MPs in aꢀendance have received from since pledged to do what they can to MPs today.” 45lives saved. Ensuring people have a canꢁlever crane in Dunbartonshire reliable source of informaꢀon is the first was even lit up in orange and purple to important step. Through combining our mark the day. strengths, we hope to reach as many SUDEPActionDay–Aglobaldayofawareness professionals and families as possible across Australia,” said Carol. Supporters, again, did amazingly well at raising the profile of SUDEP, many in memory of their loved ones. Sharing their stories, wriꢁng blog posts, contacꢁng their local media and raising money. On 22 October, there was a SUDEP Awareness Walk through London, which was caught on camera for Sky One’s What’s Up TV (new series aired from 27 January). The 150ﬅ Titan SUDEP Acꢀon Day is a special day Progress in the U.S. is supported by a which brings organisaꢀons and people mulꢁ-day event devoted to epilepsy together to raise awareness of SUDEP mortality known as Partners Against <ul style="display: flex;"><li style="flex:1">worldwide. </li><li style="flex:1">Mortality in Epilepsy (PAME). The </li></ul>fourth PAME meeꢁng will be held June Launched on 23 October 2014 (as 14-16, 2018 in Alexandria, Virginia. SUDEP Awareness Day), it shines a light on the largest cause of death in people Tom Stanton, Execuꢀve Director of the with epilepsy, helping empower people Danny Did Foundaꢀon and Co-Chair of through increased awareness, honour PAME said, Clinical lead for SUDEP & Seizure Safety Checklist awarded MBE the lives lost and raise funds for SUDEP “This is the fourth ꢁme that we will research. celebrate SUDEP Acꢁon Day, which Dr. Shankar (Cornwall Partnership Dr. Shankar is also one of the four NHS Foundaꢀon Trust) has been Partners, alongside SUDEP Acꢁon, awarded an MBE in this years’ New PlymouthUniversityandRoyalCornwall Year’s Honours List in recogniꢀon of Hospitals NHS Trust, who form the NHS his dedicaꢀon to providing services supported EpSMon project. for people with learning disabilites includes the opportunity to honor the So, what happened during the 2017 special relaꢁonship with bereaved event? families both in the UK and in the U.S. The SUDEP movement takes daily Epilepsy organisaꢀons in the United acꢁon to bring us closer to prevenꢁon, States, Europe, Australia and around but October 23rd is an especially the world recognized the global powerful day when we can all share (many of which also have epilepsy). awareness day for SUDEP. common messages and raise our voices SUDEP Acꢁon has supported and This internaꢁonal collaboraꢁon has together. We are grateful to SUDEP grown stronger since 2008. Iniꢁated Acꢁon for taking the lead to engage by families and advocates who were all advocates around the world to take desperate for answers, this movement part.” worked alongside Dr. Shankar for many years on research projects which have developed an understanding of epilepsy deaths, SUDEP and epilepsy now includes scienꢁsts, clinicians, risks. His work with the Charity includes medical examiners, organizaꢁons, and non-profit SUDEP Acꢁon has always welcomed governmental collaboraꢁons with organisaꢁons in the the Epilepsy Life Project and has since developed into the SUDEP and Seizure (Dr Brendan Mclean from Royal Cornwall Safety Checklist research project, which Hospitals Trust, Jane Hanna from SUDEP has helped to significantly improve Acꢁon, Dr Craig Newman from Plymouth risk awareness and overall safety for University Peninsula Schools of Medicine and people with epilepsy, including those Denꢁstry and Dr Rohit Shankar from Cornwall living with epilepsy and a learning Partnership NHS Foundaꢁon Trust) disability; reducing the number of agencies. This broad group of UK and across the globe, most recently stakeholders has rallied to end with Epilepsy Acꢁon Australia. sudden death in epilepsy by launching Carol Ireland, Chief Execuꢀve Officer innovaꢁve research projects, awareness of Epilepsy Acꢀon Australia, said she and educaꢁonal campaigns, and was “delighted to launch this powerful bereavement support services. partnership that I hope will lead to more research, awareness and more epilepsy deaths across Cornwall. 67SUDEP; so, we weren’t aware of what the weather, everyone that took part we could do to try and reduce his risks, enjoyed the whole experience and it except to try to stop his seizures. All he went like clockwork from start to finish. Why I'm involved with SUDEP Action - Toni Slade <ul style="display: flex;"><li style="flex:1">wanted was to feel beꢀer. </li><li style="flex:1">In October 2016, we held a Charity Ball </li></ul>Our involvement with SUDEP Acꢁon came about aﬅer my son died on the 14 August 2015 – he was 26 years old. The post-mortem result came back as SUDEP and this was the first ꢁme we had heard of it. Family and friends now wanttobringawarenessofepilepsyand SUDEP to the fore and help raise funds for much-needed research because we are all searching for answers as to what happened. at Wortley House Hotel in Scunthorpe. A charity football match took place 200 people aꢀended, and everyone <ul style="display: flex;"><li style="flex:1">on Friday 30 October 2015 at Appleby enjoyed it. We held </li><li style="flex:1">a</li><li style="flex:1">Bowling </li></ul>Frodingham, and the local supermarket Tournament at AMF Bowl in May 2017. where Nathan worked in Ashby, held We also produced a Cheeky Charity a cake sale and other acꢁviꢁes over Calendar for 2017 and one person ran October half term week 2015. in the Grimsby 10k in July 2017. <ul style="display: flex;"><li style="flex:1">Other events included, </li><li style="flex:1">a</li></ul>Ten-Pin A Charity Swim took place on Sunday Bowling Tournament held at Ashby 13 August, (on the cusp of the two- Bowl on Sunday 15 November 2015 year anniversary of Nathan’s death) by fundraising for Epilepsy Society and Derek Cartwright swimming 40 lengths Nathan is a twin with his sister Taryn SUDEP Acꢁon. at Riddings Pool. A Casino Charity Ball, was also held on Saturday 21 October. who is 1 minute older. They were born in South Africa on the 21 December We had three runners championing I would like to thank all those people our cause, enter the North Lincolnshire who have helped to support us with Half Marathon on Sunday 15 May 2016. our efforts in fundraising. Especially Then, on the 22 May 2016 we had a to those people who are sꢁll helping 1988. Taryn was always a leader and Nathan a follower. Nathan was dyslexic and struggled at school. He was bullied at school and struggled to <ul style="display: flex;"><li style="flex:1">Zumbathon held in Gainsborough. </li><li style="flex:1">to support us today, two years on </li></ul>make friends. He struggled with self- and struggling with our emoꢁons, as confidence and trying to understand A Coast to Coast Cycling Charity though it was only yesterday. Event (#Ride4Nath) took place from why his peers were not accepꢁng of him. Once Nathan started college and Southport to Hornsea, 215 miles over He was a sweet soul and never had a four days from the 24 June 2016 - bad word to say about anyone, very where we had 12 people cycling, a considerate, polite and cared - OUR driver and two support people. The BEAUTIFUL BOY. first two days were wet ones, the last work, he came into his own. He made friends and was involved with ten-pin a beꢀer-paid job. He eventually had no bowling and enjoyed going to the gym. choice but to do two-hour shiﬅs at the local supermarket, because he felt so Nathan aꢀended adult educaꢁon to exhausted. He had worked there for improve his Maths and English, so eight years and was well loved by all he could earn more in a beꢀer-paid who worked with him. He had his first job. He bought an expensive camera girlfriend at the age of 25, he was a late and equipment and went to college bloomer! to study photography. He passed his

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

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