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A VICAR's LIFE QPR Chaplain Bob Mayo Talks About Living With

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A VICAR's LIFE QPR Chaplain Bob Mayo Talks About Living With Issue 19, Winter 2017/18 A VICAR'S LIFE QPR chaplain Bob Mayo talks about living with epilepsy Me and my epilepsy, page 6 DIAGNOSIS What the electrical activity inside your brain reveals Understanding your EEG page 18 SODIUM VALPROATE Our campaign to stop babies being born with avoidable disabilities Making your voices heard, page 15 epilepsysociety.org.uk EPILEPSY REVIEW NEWS 3 DRIVING ANTI-EPILEPTIC DRUGS Hope on road ahead? The image on our front cover is particularly poignant. Friends at Lack of generic Research at Epilepsy Society has shown play, the innocence of childhood, the joy of camaraderie. It could that people who only experience auras epilepsy drugs following epilepsy surgery may be as safe be either of the two young boys who is protecting the other: is to drive as those who are under 25 one giving the other a piggy back or is one hugging the other? helps push up or over 75 in the general population . Current UK driving regulations may It doesn't really matter. The painting is by Tina Thompson who has NHS bill allow a person to drive if they have contributed many pieces of art to our 'artist and epilepsy' gallery focal seizures with no impairment of (see picture credit below), but this painting has a special resonance. awareness or disturbance that would Issues around the supply of anti-epileptic for epilepsy drugs has gone up by affect their ability to control a vehicle, drugs have hit the headlines several £3,000,’ he said. as long as they have never had a times since the last edition of Epilepsy The Medicines and Healthcare seizure with loss of awareness. Children often say and do things in a much 10th anniversary of losing her sister, so she set Review. Over the summer there were products Regulatory Agency (MHRA) People who have epilepsy surgery clearer, more direct manner than many adults. up a fundraising page on Facebook, asking particular problems with the supply of has produced guidelines setting out will almost inevitably have a history While we are still pondering, deliberating the friends and family to make a donation on clobazam, levetiracetam and lamotrigine. which epilepsy drugs should not pose of seizures with loss of awareness. facts, the voice of innocence and youth cuts her own birthday, with all money going to Although these problems have now a risk if a patient is prescribed a different Consequently they cannot drive after straight to the point. And this has certainly Epilepsy Society in memory of her sister. been resolved, The Times ran an article version (epilepsysociety.org.uk/mhra- surgery if they continue to have auras. been the case over Christmas and the Her fundraising target was £150 but she in December reporting that more than guidance-anti-epileptic-drugs). Recent research, led by Epilepsy New Year. more than doubled her goal, raising £355. 100 drugs, including some for epilepsy, Epilepsy Society contacted the Society’s former medical director, First of all, we received a letter from Her mum, Nicola, said she was 'super proud' were in short supply and patients were Department of Health about periodic Professor John Duncan,has shown that 10-year-old Ellie from Sheffield, who had lost of her daughter. You can read Della's story going without essential medications. problems with availability of different those who only experience auras with her friend Patrick to epilepsy at the age of 16. at epilepsysociety.org.uk/della The Times said that supply problems versions of epilepsy drugs. no impaired awareness following You can read Ellie and Patrick's story on page Ellie and Della are truly inspiring. Both girls were forcing health officials to approve Michelle McDaid from the surgery, may not be at a higher risk 8, but the real message in Ellie's short but have ensured that the legacy of Patrick, Ellie's temporary price rises of up to 4,000 government's MPD Parliamentary of causing an accident than under 25s beautifully written letter, was for 'someone friend, and Laura, Della's sister, will be a per cent to boost stocks. 'The NHS and Public Accountability, said: and over 75s in the general population. to make a cure' so that others would not also better future for others, greater knowledge is spending more than £50 million 'Manufacturers of medicines have The research calculated the ‘chance die of epilepsy. about the causes of epilepsy and, hopefully, a month overpaying for the medicines a legal duty to ensure continuity of of a seizure in the next year’ (COSY) for Then we heard from the family of 12-year- better treatments. but pharmacies are still running out for supply of medicines to UK patients. 819 surgery patients. People with auras old Della Mead. Della was just three when Our researchers never stop in their tireless days at a time and turning patients However supply issues do arise and the only in the last year had a COSY score her older sister, Laura, died of epilepsy on quest to unravel the complexities of epilepsy, away,' wrote journalist Chris Smyth. Department of Health is fully aware of of 11.3 per cent. UK driving regulations Christmas Day in 2007. Christmas is obviously and we know that you never stop in your Professor Ley Sander, medical the problems this can cause and allow driving a private motor vehicle a very painful time for all the family, with tireless support of their work. director at Epilepsy Society said that acknowledges the concerns raised. if the COSY is less than 20 per cent. constant reminders of the daughter and sister So from all of us at Epilepsy Society, a huge while patients were not reporting any 'The production of medicines is Professor Duncan said: ‘If a COSY they lost. And Della's mum, Nicola, finds that thanks and a happy new year. current problems with the supply of complex and highly regulated. There is of below 20 per cent is regarded as an even fundraising for epilepsy can stir up too epilepsy medication, there had been a a team within the department which acceptable risk, it may be suggested many heartbreaking memories. drop in the number of generic versions. deals specifically with medicines supply that those with auras only in a given But Della desperately wanted to mark the Nicola Swanborough ‘At the moment there is a dearth of problems. It works closely with the year might be allowed to drive.' Editor generic drugs available for epilepsy, so MHRA, the pharmaceutical industry and • This does not alter current driving doctors are having to rely on branded NHS England to help prevent shortages regulations for people with epilepsy. drugs and that has a cost implication. and to ensure that the risks to patients Go to epilepsysociety.org.uk/driving At one NHS institution the monthly cost are minimised when they do arise.’ for any future updates. New year, new chairman FRONT COVER Editor Nicola Swanborough Epilepsy Society Epilepsy Society has a new chairman. our pioneering research, both in Friends: Tina Thompson Email [email protected] Chalfont St Peter, Bucks SL9 0RJ Peter Worthington has been genomics and brain imaging; the Telephone 01494 601 417 epilepsysociety.org.uk You can view more of Tina's artwork To receive Epilepsy Review, email us at the Registered charity no 206186 elected as chairman of the board ever-developing provision of life at epilepsysociety.org.uk/artists-and- address above, or see back cover A company limited by guarantee of trustees, taking over from interim enhancing care services for those epilepsy Registered number 492761 England Views expressed by contributors in this publication chairman Adrian Waddingham. with the most severe forms of If you would like to submit work for are not necessarily those of Epilepsy Society Designed by Ben Dugdale Design Epilepsy Society's online art gallery, Peter, who is also chairman of epilepsy; and the amazing work bendugdale.com please email nicola.swanborough@ Information may change after printing and is not Printed by Lefa Print the London North West NHS of fundraising, marketing and epilepsysociety.org.uk a substitute for advice from your own doctors. lefaprint.com Healthcare University Trust Board, information teams in supporting Epilepsy Society is not responsible for any actions Printed on chlorine free paper said: ‘I feel I am joining Epilepsy the 600,000 people across the UK taken as a result of using this information from sustainable forests Society at a very exciting time with with epilepsy. It is truly inspiring the promise of breakthroughs in to be a small part of this.’ Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 4 NEWS 5 AWARD SCIENCE MEDICATION Real snow, real joy, real freedom Watch it on video All rise for the prof Cooling powers? Switching between drugs You can find these videos at youtube.com/epilepsysociety Scientists in Japan are using computer People's feelings and perceptions stimulation techniques to show how should be taken into consideration lowering the temperature of specific when switching between different regions in the brain could potentially versions of their epilepsy drugs. The be used to treat epileptic seizures. Medicines and Healthcare products Treatment with medication or Regulatory Agency (MHRA) has surgery does not work for some updated its advice for doctors, people, so scientists have been looking following a campaign by Epilepsy at a potential alternative called focal Society and Epilepsy Action. cooling, in which a device would be Epilepsy drugs are divided into three Epilepsy Society’s Professor Philip implanted in the brain to suppress the categories, according to risks Patsalos received a standing electrical signals – discharges – that associated with switching between Katie Russell tells neurologist ovation when he was awarded the characterise epileptic seizures.
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