Epilepsysociety.Org.Uk FAMILY Laura Grainger Talks About Her Memory
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Issue 15, Spring/Summer 2016 FAMILY Laura Grainger talks about her memory loss Me and my epilepsy, page 6 CAMPAIGN How 39 per cent of premature epilepsy deaths could be avoided Speak up for epilepsy, page 8 MEDICAL Osteoporosis and anti-epileptic medication Should you be worried? page 18 epilepsysociety.org.uk : EPILEPSY REVIEW I have just donated my car to Epilepsy Society via Giveacar, a not- for-profit social enterprise that turns your old car into cash for charity. It was a bit of an old banger, so I'm afraid the gesture was greater than the gift. It will only fetch scrap value – £10 at a push (something my car required on many an occasion). By the time Giveacar's admin fees have been taken into account, I think Epilepsy Society will receive the princely sum of £7.50 (again, at a push). Several people have asked me the same two allow you to use your pass before 9am. questions: firstly, did I feel sentimental about If not, it's rubbish. sending the car for scrap; and secondly, was For anyone with seizures, not being able it worth it? to drive is huge. Many people with controlled Prior to the car being picked up, I said seizures say that one of the key reasons they I was definitely not sentimental about it take their medication regularly is the fear going. I said I was not a car person and felt no of losing their licence should they have emotional attachment. It was simply a means a breakthrough seizure. of getting from A to B. Then the scrap So was donating the scrap value of the car merchant turned up, hoisted my car onto worth it? Absolutely. £7.50 may be a drop in the tow bar and my eyes welled up. the ocean, or in the petrol tank, but if it goes Watching my faithful, if unreliable, car in any small way to helping researchers here, being towed away brought home the at Epilepsy Society, understand more about enormity of just how devastating it must be seizures and more importantly stopping for anyone with epilepsy who has to rescind them, then my rusty old banger has gone their driving licence due to seizures. to a good cause. Our society is built around our cars. I don't like to think of it being crushed into We depend on them for getting to work, an unrecognisable pile of metal but shopping at out-of-town malls, socialising, I would like to think that one day we'll nail accessing services, transporting children epilepsy and the open road will be there and the list goes on. for everyone. A bus pass may be some compensation but only if you're lucky enough to live in a city where there is a viable service. And if you live in an area that is enlightened enough to Nicola Swanborough Editor FRONT COVER Editor Nicola Swanborough Epilepsy Society Giraffe: by a patient Email [email protected] Chalfont St Peter, Bucks SL9 0RJ at Epilepsy Society's Telephone 01494 601 417 epilepsysociety.org.uk Sir William Gowers To receive Epilepsy Review, email us at the Registered charity no 206186 Assessment Centre, address above, or see back cover A company limited by guarantee Chalfont St Peter, Registered number 492761 England Buckinghamshire. Views expressed by contributors in this publication are not necessarily those of Epilepsy Society Designed by Ben Dugdale Design bendugdale.com Information may change after printing and is not Printed by Lefa Print a substitute for advice from your own doctors. lefaprint.com Epilepsy Society is not responsible for any actions Printed on chlorine free paper taken as a result of using this information from sustainable forests : NEWS 3 HELPLINE GOVERNMENT Power of listening Department of is recognised For the third time in succession, health fails to Epilepsy Society's Helpline has been awarded the Helpline Partnership prioritise epilepsy Standard mark. The mark is renewed every three years and reflects best practise. Epilepsy Society is the only epilepsy Epilepsy Society has expressed its However David Marshall welcomed charity to have this standard. disappointment at the government's the department of health's decision to The helpline has been offering failure to prioritise services for people accept new commissioning for value support and a listening ear to callers with neurological conditions, including data packs which could help clinical since it opened in 1990. In the financial epilepsy, over the next year. commissioning groups recognise and year, 2015-2016, it took 6,223 calls. A Public Accounts Committee (PAC) address poor outcomes for people Sarah Hill, head of services at the report had made it clear that NHS with epilepsy in their areas. Helpline Partnership said: 'The Helpline services for people with neurological The department has also accepted at Epilepsy Society has provided conditions 'are not consistently recommendations to reduce variations some excellent examples of a high good enough.' in access to neurologists and to give quality service.' In its Treasury Minutes from last clarification to commissioning Epilepsy Society helpline manager, month, the department of health responsibilities for neurology. Christine Brock outlined the value of rejected several key recommendations There are over 12 million people in the helpline:"It is very powerful for by the PAC including calls to retain the England with neurological conditions. a caller to know that someone is position of the national clinical director The Neurological Alliance represents 80 listening. Often it isn't just a practical for neurological conditions and to deliver organisations working to improve the response that is needed, but an a personalised care plan for everyone lives of those people. In a statement it opportunity to talk through the with a long-term health condition. said the government's response meant emotional impact of epilepsy.' Epilepsy Society's interim chief that neurology services would continue One caller explained what the executive David Marshall, said: 'We are to lag behind other areas in standards helpline meant to them: 'I felt I could disappointed to see the government’s and patient outcomes. say everything I needed to say and was admission that NHS England will not It said there is considerable evidence able to cry. I needed someone who be prioritising services for people with that neurology services suffer from had the time to listen to me and neurological conditions in the next year. enormous regional variation in access to who knew about epilepsy.' 'The choice not to retain the services and widespread disengagement national clinical director for adult by local commissioners. Epilepsy Society Helpline neurology, or to deliver personalised Arlene Wilkie, chief executive of 01494 601 400 care plans are decisions that will not the Neurological Alliance, said: 'Once Daytime: Monday, Tuesday, make a positive impact on the lives again, the government has sent a Thursday and Friday 9am – 4pm of people with epilepsy and other message that the needs of people Extended hours: Wednesday neurological conditions at a time with neurological conditions are simply 9am – 8pm. when it is vital progress is being made.' not important enough to focus on.' National call rate. Drug monitoring unit wins accreditation Epilepsy Society's Therapeutic given to a UCLH 'pathology; clinical Drug Monitoring Unit (TDMU) biochemistry' provider, as well as in Buckinghamshire has been being the first awarded to any awarded accreditation by the London-based hospital. UK Accreditation Service (UKAS). Professor Philip Patsalos head The unit carries out clinical of the unit said: 'This is a great analysis of drug levels so that accolade. It is a real tribute to the a person's epilepsy drug therapy vital work which we do, analysing can be individualised to their own drug levels so that drug efficacy therapeutic range. is maximised and side effects are The award is the first of its kind kept to a minimum. " 4 NEWS GENETICS WOMEN PREGNANCY New chief executive Infertility risks Sodium valproate survey A new study has shown that women The UK's leading epilepsy charities with epilepsy have no more infertility have carried out a survey to find risks than women without the out how aware women are of condition. Nor do they have a the potential dangers around the significantly greater risk of miscarriage. epilepsy drug sodium valproate, Eighty-eight women with epilepsy during pregnancy. took part in the research and 109 The survey was developed by Epilepsy women without the condition. Society, Epilepsy Action and Young The women were asked questions Epilepsy and was aimed at women with about pregnancy and their menstrual epilepsy between the ages of 16 and 50. Epilepsy Society has a new interim cycle during their childbearing years. The questionnaire aimed to find out chief executive, David Marshall. They were also asked to keep a daily how aware women, young girls and David joined the charity in electronic diary. healthcare professionals are of the February after six years as chief Results showed that there was an potential harm to babies exposed executive of the Hospital of St John almost equivalent rate of pregnancies to sodium valproate in pregnancy. and St Elizabeth and its on site in the two groups - 61.4 per cent in Up to 10 per cent of babies exposed hospice St John's, in London. the epilepsy group and 60.6 per cent to sodium valproate in the womb are Prior to that he was their finance in the healthy controls. The study also at risk of being born with a birth defect director. found that there was an identical while up to 40 per cent are at risk of David brings 20 years of proportion of live births.