Issue 22, Summer 2019
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Issue 22, Summer 2019 Genomics – How to manage if Calm, cushion, call how big data there are medicine – we launch our new shortages seizure first aid is unlocking PAGE 8 campaign our DNA PAGE 16 PAGE 18 epilepsysociety.org.uk EPILEPSY REVIEW NEWS PHOTOSENSITIVE EPILEPSY Charity calls on Gov to MEDICATION safeguard people online New guidance on Anti-epileptic medication is the mainstay treatment for most pilepsy Society is calling people. And research shows that sodium valproate people with epilepsy. For two thirds of people it is a passport to on the Government to children spend two hours a day New guidance to support safeguard people with watching the television and over regulations around the use of enjoying a seizure free life. For a third it might mean a reduced photosensitive epilepsy two hours a day online. valproate in women and girls of number or severity of seizures. So we have been alarmed by Eonline by regulating flashing images “Traditional television content child bearing age with epilepsy that could induce a seizure. is well regulated by Ofcom with has been published by specialists the increased calls to our helpline and online enquiries from Around 20,000 people in the warnings being given both audibly from the Royal Medical Colleges. UK have photosensitive epilepsy and visually before any flashing In March 2018, the Medicines those unable to get their prescribed medication. where seizures are triggered by images are shown. Unfortunately and Healthcare products flashing lights or contrasting, the same rules do not apply online Regulatory Agency published We called a meeting with the Department an issue since long before the word ‘Brexit’ quick-fire imagery. and we think that they should,” guidelines which meant that of Health and Social Services’ Medicines crept into our vocabulary. Epilepsy Society is seeing an said Clare Pelham. valproate should no longer be Supply Team. We wrote to Health Secretary Alongside tackling medicines shortages, increasing number of complaints The charity has written to prescribed for girls and women Matt Hancock. And we contacted many of we have also been working to safeguard from people with photosensitive Jeremy Wright, Secretary of State of childbearing age. A year on, the manufacturers of epilepsy drugs. people with photosensitive epilepsy from epilepsy who feel online content for Digital, Culture, Media and implementation of the guidelines As with so many current problems, the online flashing lights and imagery that could with flashing images leaves them Sport asking for his reassurance. has thrown up challenges in difficulty was trying to unpick the role that trigger a seizure. vulnerable to seizures due to lack Clare Pelham wrote: “We would relation to some complex issues. Brexit was playing in exacerbating the Social media can be a lifeline for many of warnings. be grateful if you would kindly Clare Pelham, Chief Executive at situation and unearthing the true underlying people with epilepsy, providing 24-hour peer Alongside this, malicious make it clear publicly that the Epilepsy Society, said: “I hope this causes for the increased number of drug support and camaraderie. But videos with content is being ‘tagged’ with deliberate inclusion of flashing guidance will help to answer some shortages. We explained at every level the potentially seizure-inducing imagery can put keywords around epilepsy to images that might trigger a seizure of the women’s and healthcare anxiety that drug shortages were causing users at risk. And malicious posts specifically deliberately target those with the will be explicitly included in the professional’s questions.” and how this was putting people at an targeted at people with epilepsy add a whole condition and induce a seizure. online harms that future legislative The new guidance has been increased risk of seizures. further layer of anxiety. Now the Epilepsy Society is and regulatory measures will drawn up by Judy Shakespeare You can read on page 4 the response We have asked the Government to asking the Government to include address. This would be very of the Royal College of General we received from Health Minister Stephen include safeguarding for people who are regulatory measures in its Online reassuring to people with epilepsy.” Practitioners and Sanjay Sisodiya Hammond. And on page 8 you will find an photosensitive in its online harms paper and Harms White Paper that will help Sophie Harries, 22, was of the Association of British important article from our Medical Director we are asking the social media giants to protect people who are diagnosed with photosensitive Neurologists and Royal College of Professor Ley Sander on how to manage step up to the plate and take responsibility. photosensitive from potentially epilepsy at the age of 15. She Physicians. Sanjay is also Director if there is a shortage of your medication. Again, Clare Pelham talked across BBC harmful content. explains how it affects her life. of Genomics at Epilepsy Society. You may have seen and heard our Chief channels, raising awareness of the issue. Chief Executive Clare Pelham “When I was first diagnosed He said: “Some of the points Executive Clare Pelham talking on the radio, Now, as Epilepsy Review lands on your said: “Many people share videos with photosensitive epilepsy, social raised by the regulations are also and in the media about the importance of doorstep, we launch our third campaign, with potentially dangerous content media wasn’t as big as it is now, complex ethical issues. We do not ensuring a consistent supply of epilepsy this time around seizure first aid. You can without realising the danger that so it wasn’t such a problem for me. attempt to address all these issues medication for the people we support. We read about our new messaging ‘Calm, it could pose to someone who Now I have to be careful of any but hope that it will bring greater now wait to hear from Matt Hancock as to Cushion, Call’ on page 16 and we hope is photosensitive.” videos uploaded to social media clarity for clinicians leading to whether he will commission a review into that you will join us in sharing the message Photosensitive epilepsy is most that contain strobe lighting or better care for women and girls the medicines supply chain that could and increasing epilepsy awareness. common in children and young flashing imagery.” with epilepsy.” pinpoint and address problems that occur in the complex world of manufacture and Nicola Swanborough distribution. Problems which have been Editor Experts gather at Epilepsy Society for neuroimaging courses Epilepsy experts have shared their symposium on Traumatic Brain Injury Front cover Editor Nicola Swanborough Epilepsy Society knowledge and experience during also at the Chalfont Centre, organised Genomics and how big data Email [email protected] Chalfont St Peter, Bucks SL9 0RJ is helping us to unlock the Telephone 01494 601 417 epilepsysociety.org.uk two educational events at Epilepsy by Professor John Duncan, former secrets of our DNA, leading To receive Epilepsy Review, email us at the address Registered charity no 206186 Society’s Chalfont Centre. medical director at Epilepsy Society. to better diagnosis and treatment above, or see back cover A company limited by guarantee The 3rd ILAE British Branch This involved researchers who of epilepsy. See page 18. Registered number 492761 England Views expressed by contributors in this publication Epilepsy Neuroimaging course specialise in intensive care of people are not necessarily those of Epilepsy Society Designed by Dugdale Design Ltd bendugdale.com was held over three days focusing who have sustained head injuries. Information may change after printing and is not a substitute for advice from your own doctors. Printed by Rapidity on state-of-the-art MRI (Magnetic Professor Duncan said: “This was Epilepsy Society is not responsible for any Rapidity.com Resonance Imaging) and PET an important opportunity to explore actions taken as a result of using this information Printed on chlorine free paper from sustainable forests (Positron Emission Tomography) the processes that give rise to Anti-slavery policy: epilepsysociety.org.uk/anti-slavery-policy scanning in epilepsy. epilepsy following a head injury This was followed by a and how this may be best treated.” 2 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 3 CLIMATE CONTROL MEDICATION Watch it on video Hooky’s legacy for his friend Climate change Health Minister reassures people You can find these videos at and epilepsy over medication shortages youtube.com/epilepsysociety Three of the world’s leading Following concerns raised on BBC with the EU during the implementation epilepsy specialists have warned Newsnight about shortages of period. Therefore, while there may that climate change may be damaging epilepsy medications, Epilepsy still be routine medicines shortages the health of their patients. Society’s Chief Executive Clare that we will manage through our And they are challenging Pelham wrote to Health Secretary strong standard procedures, the medical professionals – and Matt Hancock, asking for clarity, supply of medical products, themselves – to fly less for particularly in the context of Brexit. including epilepsy drugs, will international conferences in order Health minister Stephen Hammond continue on the same basis. to reduce their carbon footprint sent a statement to Epilepsy Society “As part of our contingency and the impact of global warming. on behalf of the Health Secretary. plans (in the case of a no deal Watch how our trustee, Chris The neurologists, including The following is an excerpt from his exit), we have looked at over Blue, got on when he changed Professor Sanjay Sisodiya, Director statement at epilepsysociety.org.uk/ 300 different epilepsy medicines his name to Chris Purple for of Genomics at Epilepsy Society, stephen-hammond provided by nearly 50 different Purple Day 2019. say that for some people with companies.