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. different versions. Category 1 drugs Professor John Duncan how 2016 Excellence in Epilepsy Award To date, the technique has been should never be switched; category 2 her life has changed since by the British Chapter of the tested only temporarily in epilepsy drugs should only be switched if the undergoing epilepsy surgery. International League Against patients as intra-operative studies, but doctor thinks it is safe to do so, and Epilepsy (ILAE). it has shown consistent success in rats. category 3 drugs are not thought to It was the first time anyone has However, the research team at Nara pose a risk if switching between versions. received a standing ovation for the Institute of Science and Technology The new guidelines say doctors prestigious award given for lifetime caution that focal cooling can should take into consideration the achievement in the field of epilepsy. sometimes slightly increase frequency feelings and perceptions of a person Professor Patsalos is head of the of epileptic discharges in rats, even if they are given a different version of charity's Therapeutic Drug while suppressing their strength. drugs in categories 2 and 3. This Monitoring (TDM) Unit in To investigate focal cooling, scientists recognises that different packaging Buckinghamshire, where he has used a computational model of a rat can cause anxiety in some people and worked for 34 years. He is also brain. The scientists hope that focal may affect their medication routine, Bob Mayo, QPR Football Club professor of clinical pharmacology cooling might one day offer an making them vulnerable to chaplain and London vicar at the Institute of Neurology, alternative treatment for people who breakthrough or increased seizures. Residents with complex epilepsy performs his powerful poem University College London. do not respond to medication and Doctors should also take into account and associated conditions at about seizures. Page 6. The award recognises his who are not candidates for surgery. whether a person has a mental health Epilepsy Society's Chalfont commitment to the studies of journals.plos.org issue or learning disability. Centre, experienced all the thrill new anti-epileptic drugs and the SEIZURES of the ski slopes when they implementation of therapeutic AWARD RESEARCH visited Hemel Hempstead's drug monitoring around the world. How do dogs know? Snow Centre for the first time. His work has been critical in OU doctorate for Clare A 'nose' for epilepsy A new study, Epidogs, is trying to find Here Rebecca Reynolds gets ensuring that several high risk Epilepsy Society's chief executive Clare An electronic 'nose' that measures out how some dogs are able to predict ready for the ride in a sit ski. groups in epilepsy – children, Pelham has been awarded an honorary compounds in exhaled breath could be seizures. The research team from Ghent pregnant women and the elderly doctorate from the Open University a reliable tool for diagnosing epilepsy University, Belgium, would love to hear – are prescribed the dose of in recognition of her charity work in the future, according to new from you, even if your own dog does epilepsysociety.org.uk/snow medication that will give them with Epilepsy Society and Leonard research from Canada and the not alert you to your seizures. Ellie visits Epilepsy Society after optimum seizure control and Cheshire Disability. Netherlands. The technology has been Researchers hope to establish why losing her friend to SUDEP, and minimum side effects. The university recognised her as used before in other conditions but some dogs react to epileptic seizures CHARITY finds out about our research John Paul Leach, president of a ‘powerful champion of those with never in neurology. and others don't and will investigate the the ILAE British Chapter, said: particular needs and disabilities’ and Presenting their findings at the underlying mechanisms of this Financial review ‘Professor Patsalos is held in such as ‘an advocate and ally, transforming American Epilepsy Society 2017 behaviour in the hopes of making it The Charity Tax Commission is to begin warm and high regard and the attitudes and driving change which is meeting, researchers explained the possible to train more seizure dogs. the first review in 20 years of how the ILAE council recognise that he is helping build a more compassionate technology involved people placing a As well as owners of seizure dogs, tax system works for charities and how a particularly fitting recipient of and inclusive society.’ small device into their mouth and they are keen to hear from people with it can maximise benefits for the public. this year's award.’ Professor Kieron Sheehy said Clare breathing into it for five minutes. epilepsy whose dogs aren't sensitive to Epilepsy Society’s chief executive Professor Patsalos said: ‘I am was ‘one of the UK’s most influential The 'Aeonose' uses sensor arrays seizures so that they can compare them officer Clare Pelham is one of a board delighted to receive this award. and effective charitable leaders, and learning algorithms to recognise with dogs that can detect seizures. You of six commissioners with charity, However, I must thank my many whose work has made a significant potential 'danger signals' in complex will be asked questions about your dog's economic and fiscal expertise who will colleagues, collaborators and contribution to equality and justice exhaled breath mixtures from patients behaviour, personality and interaction be carrying out the review. Our director of genomics students who have been very in this country.’ with epilepsy. Such patients have with you, plus you will be asked about ncvo.org.uk/policy-and-research/ Professor Sanjay Sisodiya much a part of all that we have Clare was awarded her doctorate a unique 'breath print,' said researcher your seizures. To take part in the study funding/tax-and-reliefs/charity-tax- reads your wishes, sent in as achieved together.’ at the Barbican Centre, London. Dr Cecile de Vos. go to epidogsproject.net commission part of our Christmas appeal.

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 6 FAMILY 7

Seizures during a church service On another occasion when I came had fallen in the middle of the night. Stress is never caused by the seizure out of a seizure, I thought I was She had to stay on the floor till the Me and my epilepsy itself, but by people's reaction to it. homeless and sat outside a church in morning when her carer came. When Epilepsy gives people the chance to the country, begging. Then I realised I asked her what she had felt lying on be their best self and their worst self. I wasn't homeless, I was a vicar. the floor, she said "I know now what Rev Bob Mayo I have known people to laugh and it feels like for you Bob." For a priest jeer at me, but people can also Rediscovering my wife there can be no greater honour than Rev Bob Mayo is chaplain at Queens Park Rangers Football Club and vicar at be wonderful. Having epilepsy is a strange blessing. It to have kinsmanship with a 92-year- a London church. His shoulder has been broken so many times during a seizure When I am leading a church service, allows you to re-find your life and your old lady at three in the morning. I always mark where I am with a yellow story anew. Sometimes I come back I am that broken lady. that it is beyond repair. He has woken in the night with his teeth 'cracked open highlighter so that if I have an absence from a seizure and see a lady in front like celery', has broken his nose, many of his joints and has disfigured his face seizure, I can resume where I left off. of me and think "she looks nice". Rev Bob Mayo is vicar of the Church Members of my congregation are great Then I realise it's my wife, Sylvia, and of St Stephen and St Thomas in in the past. But here he explains how he sees his epilepsy as a blessing and completely understand. They say I have the joy of re-learning my life Shepherd's Bush. He is running the "If you have a seizure, we will just wait story and recognising once again that Sussex Coastal Marathon for Epilepsy for you." They are conscious of why I love her. For people without this Society on 17 March 2018. I may sometimes repeat a prayer. disability, they live with their life story justgiving.com/fundraising/bob-mayo3 all the time, but mine is given back to me. Wedding ceremony Epilepsy has driven me to the edges to the other side of London and After my operation I kept falling on Normally, I get a 20, 30, 40 second Banter at QPR Football Club Tell us your story The negative script of my epilepsy is walk back, talking to the homeless. my face which, at the time, ended up warning before a seizure. I have an QPR is in my constituency so I go to Would you like to share your story that I know I will hit the floor every Epilepsy has driven me to the edges. disfigured. My community put me intense feeling of sickness in my stomach. the training ground every couple of about how epilepsy impacts on six weeks – a hard, thumping smash. forward to carry the Olympic torch in Images freeze frame and I usually get weeks and hang out with the lads and your life. You might also like to I have fallen on my shoulder so many When surgery didn't work 2012, so my epilepsy became quite time to lie down. I always carry a rucksack enjoy some banter. It is about building talk about the effect it has on those times that it can't be repaired and it I have lived with epilepsy since I was unifying and my disfigured face with me and a little pillow. It enables relationships and building bridges. around you. Or you might like to is an 18-month waiting list to get in my 30s and it can be a hard slog. became owned by the community. me to be quite rooted and chilled. There is no need for the players to talk about how you get on with a new shoulder on the NHS. In 2011 I underwent brain surgery but I am a marathon runner and am know about my epilepsy. QPR is full your life in spite of your epilepsy. On the positive side, I often only I'm afraid I'm not one of the 'happy- Making a friend of my epilepsy currently training for the Brighton of dreams and possibilities and hopes. To share your story in Epilepsy sleep for a couple of hours because ever afters'. Although it is successful I have tried to make a friend of my Marathon. When I am out running – At the training ground you see football Review, please: when I roll on my shoulder it is so for many people, it didn't work for epilepsy. It helps me to connect with which I choose to do – the adrenaline in its cleanest form. You have a group • Fill in our online form at painful it jerks me awake. So me. Before the surgery I was all the vulnerable souls out there. It often means that I don't recognise of guys doing their best to do the best. epilepsysociety.org.uk/become- sometimes I leave a note on my pillow experiencing a full-on seizure every teaches me empathy and vulnerability. a seizure coming on. I once had a That is what epilepsy has taught media-contact for my wife, Sylvia, then catch a train two years as well as more frequent If I am sitting with someone who seizure while running out in the me. I must make the most of what • Download the form at absence seizures. Now I fall to the is crying, that is me. If I am sitting countryside. When I got up, I carried I have got. I am going to hit the floor epilepsysociety.org.uk/ floor every five or six weeks and with someone who is bereaved, on running for about five miles, not in the next six weeks but in between yourstoryresearch and send to: I have two to three absence seizures that is me. I am grieving for the knowing where I was. It was quite times I am going to make the most of Press Office, Epilepsy Society, every week. life I have not had. magical. As a precaution I always allow my time. I am not living my five and Chesham Lane, Chalfont St Peter, After my surgery, I said to the If someone is scared, that is me, myself extra time and keep the address a half weeks on the basis of what Buckinghamshire SL9 0RJ. doctors: "Look, we took the choice waiting for the next seizure to happen, of where I'm supposed to be on will happen in the sixth. • email pressoffice@ together, we tried together, it didn't knowing that it is going to come. a piece of paper inside my shoe. It was epilepsysociety.org.uk for work. Let it go." They need experiences God has taken the vulnerable soul when I looked at it that I realised Kinsmanship with 92-year-old lady a copy of the form to send like mine to make them hungry to that epilepsy has made me, and I was a vicar about to take a wedding Recently I went to visit a lady called to us at the above address. keep on improving surgery further. used it for the good of others. and was able to get back on track. Sarah who is in her 90s and who

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 8 RESEARCH 9

her letter to us at Epilepsy Society where she knew our researchers are working hard to find out what causes epilepsy and why some people die at an early age due to the condition. Ellie's mum, Roisin Paul said: 'Ellie was thrilled and touched to receive the letter. She really felt she had been listened to. 'But then she also received a letter from Epilepsy Society telling her about the research that they carry out, particularly looking at what causes some people with epilepsy to die suddenly and with no warning. 'Ellie watches lots of medical programmes and is very aware that science can lead to cures for some conditions. The letter from Epilepsy Society really helped Ellie to understand and make sense of everything that had happened to Patrick. 'She felt reassured that there was a group of people out there doing You can help make Ellie's wish of a 'cure' for something about epilepsy. It gave her epilepsy come true by donating to our appeal a real sense of hope for the future. 'Ellie is very excited that this appeal, at epilepsysociety.org.uk/ellie The story behind our in her name, is helping to raise funds towards research that could change 'He loved holidays in France the lives of people like Patrick in the and really loved the seaside. Christmas Wishes Appeal future, and may even help to save lives. He was never happier than when 'It is very exciting for all of us that we wheeled him into the sea in the letter Ellie wrote, totally off her a Hippocampe beach wheelchair. own back, could help other people, He loved being in the water like Patrick, who have epilepsy. with the waves coming at him. In 2017 our Christmas appeal focused on a friendship between two We are very proud of her.' 'My biggest fear was that something would happen to young people, 16-year-old Patrick and 10-year-old Ellie. Tragically, Patrick but I never thought of Patrick died due to his epilepsy in May while on holiday with his I felt a mix of sudden unexpected death in epilepsy. We were never told family. But Ellie was determined that her friend should emotions when that it was a risk. We were not have died in vain. We pick up their story. Patrick died. I felt happy visiting our family in Northern Patrick Ireland when my husband that he wasn't going to …in the words of his mum, found Patrick in the front Ellie Paul had always felt a great sense and really understands how they Ellie reached out to is also one suffer anymore but I also Liesa Harrison sitting room at eight in the of injustice that her friend Patrick, 16, feel. She just felt for him in a very of Epilepsy Society's supporters. 'Patrick was one of those boys morning on 31 May. was not able to lead the same full life human way.' Our supporter has asked to remain felt sad that he wasn't who once you'd met him, you'd 'Our family life has changed that she could enjoy. But when Ellie heard in a school anonymous, but you can read Ellie's here for when there never forget him. He had no massively without Patrick. His Patrick had severe disabilities caused assembly that Patrick had died from letter opposite. speech but he had a great sense brother Fergal is 13 and life is by complications at birth. He had an epileptic seizure in the night while The first that Ellie's parents, Roisin might have been a cure of humour and great cognition. now very different for all of us. limited mobility and limited on holiday with his family in Northern and Ralph, knew about Ellie's letter made. I also felt a bit 'Patrick was a full-term baby 'We didn't know anything communication skills but was very Ireland, her sense of injustice turned was when their daughter received a but he was starved of oxygen about Ellie's letter until she got much a part of Ellie's community. to heart break and Ellie resolved to reply from our supporter expressing nervous, like how many at birth and had quadriplegic a reply. Ellie is a great example Ellie saw him every Sunday at church. take matters into her own hands. her sympathies at the 'tragic loss' more people are going to cerebral palsy as a result. But we of someone who really cares 'Patrick really tugged at Ellie's She wrote to a high profile public of Patrick but also offering Ellie always found a way to make sure about others. She is a testimony heartstrings,' said her mum, Roisin. figure who she hoped might be able to a glimmer of hope. die at such a young age?' he was able to do everything to her whole family.' 'She is very empathetic towards people help. By coincidence, the person that She told Ellie she would forward ELLIE he wanted to.

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 10 YOUR GUIDE 11

Ellie's visit to Epilepsy Society It's only three months to go until together a guide to Purple Day 2018, Ellie and her family visited the Purple Day – 26 March 2018. We with an invitation to put on your Epilepsy Society Research Centre in Buckinghamshire to meet Professor know from your feedback in the pyjamas for epilepsy. A strange Sanjay Sisodiya, our director of past that you like us to give you request maybe, but we want genomics. Ellie and her family were able to see for themselves the plenty of time to prepare for the day everyone to get into their PJs and join research which is giving us a better and help us to raise funds to support us for a purple pyjama party, packed understanding of the causes of epilepsy and how it will lead to more people with epilepsy. So on the with fun, friends and fundraising. personalised treatments for people following four pages we have put We can't wait. whose lives are dominated by seizures. They were also able to see how, by looking at people's DNA, we are hoping to find out why some people with epilepsy die at a young age. Like Ellie, we want to stop this happening. Below, Ellie had a 3D image made of her face using a technique that can help explore links Purple Day Pyjama Party between face shape and epilepsy.

Who doesn't like to spend the the supermarket, gym, post office day in their pyjamas? They're the or school gates looking as though ultimate comfort clothes allowing you are dressed for bed. What a you to express your inner Disney great opportunity to tell people princess, identify with a superhero, about epilepsy and ask them to festoon your legs with hearts, make a donation at the same time. flowers and teddy bears or go all On the following pages we also out in multi-coloured stripes. look at the work of Epilepsy Well now you have the perfect Society over the past 12 months excuse to wear your PJs from and show you how your money dawn to dusk by holding a purple has helped to make a difference. Katrina Jones is community pyjama party to help raise money There are 600,000 people in the fundraising manager at Epilepsy to support people with epilepsy UK with epilepsy and more than Society. She has worked for the on Purple Day. a third of them do not respond charity for six years, helping our We have lots of party ideas over to medication. This means they supporters to have fun, raise the page but of course you will have to live with the possibility of money and change lives. So her have many more and it's really up seizures on a daily basis, affecting life is full of balloons, cup cakes, to you what you do. For starters, education, employment, social marathon vests and – this year it may be a purple pyjama party, life, driving and the ability to – pyjamas. but you don't have to wear support a family. We're here purple pyjamas – the day is purple to support them. but the PJs can be any colour. Changing into your pyjamas You can party with friends, could change the life of someone family or work colleagues or just with epilepsy. That has to be a go about your normal routine in good reason to join our purple your pyjamas. It's a great pyjama party and stand up for conversation starter to roll up at epilepsy in your slippers.

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 12 13

Every purple pound raised will help change lives…

£5 could help us distribute vital information about epilepsy to people across the UK, ensuring the first five leaflets

40mm are free to those who need them

session or an hour of school games Go purple, but not in PJs £10 could help to ensure that such as sleeping lions. Sensible rarely someone who needs to talk happens in pyjamas – silly often does. about their epilepsy can call Socialising in pyjamas is not for our Helpline Hit the town in your PJs. Party everyone but you can still help us to 4 on down to the school gates, raise money for epilepsy on Purple supermarket or local cafe in your Day in many other ways. You could: £15 could help provide pyjamas or onesie and explain that everyday equipment for one of it is Purple Day. • Organise a bake sale or coffee our laboratories where we carry Pyjama party old fashioned card and board To find out more about You may find it is an opportunity morning at home, work or out groundbreaking research Get into your pyjamas games, a karaoke night, or just for others to talk about their own school. Cup cakes with purple a chance to catch up over a mug Purple Day and our experiences of epilepsy. One in icing are always popular and for epilepsy of hot chocolate and some home- purple pyjama party go 100 people has the condition, people really appreciate £30 could fund a blood test baked goodies. We have 'counting so friends and colleagues are likely home-baked goodies to fine tune medication levels Dig out your pyjamas or head sheep' sheepstakes, purple selfie to epilepsysociety.org. to know other people in their circle so don't hold back so as to maximise seizure 1 down to your local props and more for you to uk/purpleday, email with epilepsy. control and minimise side supermarket and buy a pair. With download at epilepsysociety.org. Make sure you share pictures of • Set yourself a sponsored effects for someone a bit of luck, they may have been uk/purple-day-extras You can fundraising@ yourself in your pyjamas on social challenge on your Christmas list and you also order Epilepsy Society epilepsysociety.org.uk media. We will be keeping an eye will have the perfect pair, balloons and banners. or call 01494 601414 out for the wackiest places that • Take part in a Purple Walk £100 could help fund a DNA personalised to your taste. people turn up in their pyjamas. test, helping our scientists to Take the party to work with • Organise a 'wear purple' unravel the causes of epilepsy, Invite friends and family round 3 you. Ask colleagues to come Set up a Purple Day fundraising dress down day leading the way to quicker 2 for your purple pyjama to work in their pyjamas and 5 post on Facebook, post some diagnosis and better party. You could make it a film charge them for the privilege. You pictures of you and friends in • Shave your head for treatments. night, a midnight feast, a pillow could provide a midday midnight pyjamas and ask friends to donate. Epilepsy Society. fight for those feeling adventurous, feast, a lunchtime ghost story

How our supporters helped raise 1,300 Epilepsy £580,000 was Gifts from Trusts and Company 75 people raised 250+ runners, 50+ cyclists raised 200+ community money for Society members raised through supporters foundations donations almost £20,000 on walkers and over £45,000 in fundraisers baked, Epilepsy Society and payroll givers legacies around the world raised £153,000 £49,000 Purple Day 2017 trekkers raised RideLondon 100 danced and partied brought £241,000 through events at over £158,000 their way to almost in 2017 in £100,000 home, work and in £90,000 the community

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 14 CAMPAIGNS 15

This is how Epilepsy Society has supported people Epilepsy Society's campaign in the last year. Our helpline, information services, featured across all media channels and was discussed in the House of research, communication and campaigns are only Commons and at the European possible thanks to your kind donations and Medicines Agency public hearing How your voices continuing support. Everyone Knows Someone #explainepilepsy campaign We generated 500k reach and made the world 11k engagements on Epilepsy Society's Twitter and Facebook over National Epilepsy Week (14-21 May) listen Our Facebook page was the most engaged epilepsy Facebook page in the world over 14-21 May. As Epilepsy Review went to 2m Guardian readers reached through our #explainepilepsy letter print, we were awaiting the 30,000 watched our campaign videos results of a public hearing Helpline Information In 2017, our helpline took 3,600 100,000 leaflets, factsheets, Campaign around seizures being into the epilepsy medication, calls and spent 850 hours talking booklets and DVDs sent out to mistaken for drunken behaviour sodium valproate. We would to callers. The average call time is people affected by epilepsy Featured in HuffPost with 10.7m 17 minutes. monthly viewers and the Mirror like to thank all of you who Online with five million daily took part in our sodium viewers Facebook posts shared 2,200 valproate awareness times reaching over 200,000 people survey. Here, editor Nicola Swanborough explains how your voices Digital helped us raise awareness Medical 2 million visitors to our website of risks associated with 2,800+ patients seen by our doctors 51k Facebook fans with a reach 800+ MRI scans carried out of 6 million and 100,000 the drug, in the House of 21 3D face images photographed engagements Commons, across all media 433 blood samples taken for DNA 20k Twitter followers with a reach Care services testing of 2 million and 40,000 engagements 100 residents with complex channels including the BBC, 34 examinations to look at retinal 450,000 video views epilepsy and associated conditions and across Europe fibres at the back of the eye are empowered to lead as full a life 48 Transcranial Magnetic as possible that includes swimming, Stimulation scans performed horse riding, gardening and ski-ing. In August we carried out a survey to The results showed that in spite of 21 September. By the next morning 900+ patients have undergone find out how aware women and girls a valproate toolkit introduced last year BBC Radio 4's flagship programme videotelemetry of childbearing age are of the risks to inform women and healthcare Today was talking about the statistics associated with the epilepsy drug professionals about the risks, and the issues around valproate. sodium valproate during pregnancy. 20 per cent of women taking sodium At 10am, our chief executive Clare Although the medication is very valproate either don't know of the risks Pelham was on Radio 4's Woman Hour Campaigns effective in controlling seizures and for or haven't been given any information explaining the crisis which has affected Sodium valproate awareness many is a life-saving drug, it can pose about them. thousands of families in the UK since campaign a serious risk for babies exposed to the And worryingly, 70 per cent have sodium valproate was first licensed 2,350 women and girls took part in medication in the womb. Ten per cent not received the valproate toolkit here in 1974. It gave her a platform to our sodium valproate awareness of babies born to women who are developed by the Medicines Healthcare call on health secretary Jeremy Hunt to campaign which showed 70 per taking sodium valproate have physical and products Regulatory Agency. You make it mandatory for all women Therapeutic Drug cent of women taking sodium disabilities and up to 40 per cent go can read the results over the page. taking sodium valproate to have a Monitoring valproate have not received the on to experience learning difficulties. These statistics – your voices –- yearly review before their prescription 13,729 blood samples from across MHRA sodium valproate toolkit Over 2,000 women took part in our enabled us to win valuable airtime on is renewed. the UK analysed for epilepsy explaining risks associated with the Monday and Tuesday 9am to 4pm survey, carried out in conjunction with the BBC, with BBC News covering the From Woman's Hour, Clare was and Wednesday 9am to 7.30pm medication levels drug during pregnancy Confidential. National call rate. Epilepsy Action and Young Epilepsy. story on the 6pm and 10pm news on rushed to the Victoria Derbyshire

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 16 17

again using our survey results to confident that issues around sodium highlight the lack of awareness valproate will finally be resolved. In fact around sodium valproate risks we know they will, because we won't during pregnancy. stop until they are. The two-hour debate was lively, And we would like to thank each full and unanimous in MPs' desire one of you who filled in our survey or to ensure that all women who are shared it with others through social prescribed sodium valproate have media or in conversation. By standing a right to be told of the risks during with us, you are helping turn the tide. pregnancy. Time and again, MPs from across the country quoted our survey. You can read more about the But not all the activity around campaign and catch up with sodium valproate has been in the media footage and reports at public arena. Clare Pelham has been in epilepsysociety.org.uk/yourvoices correspondence with health secretary Jeremy Hunt, calling for mandatory Follow Nicola Swanborough on Twitter Michelle's story reviews for women taking sodium @liasw valproate, before their prescriptions Twenty-four hours after having Epilepsy Society's Clare Pelham is interviewed by BBC's Nicki Stiastny are renewed. Lord O'Shaughnessy, her first baby at 16, Michelle parliamentary under secretary of state Hackett started having multiple for health has replied on behalf of seizures and was prescribed studios, three floors underground at the story in anticipation of the public Mr Hunt, underlining his recognition 2,350 women and girls with epilepsy under sodium valproate. Less than the BBC where, with Deborah Mann hearing into sodium valproate at the of the need for further action, but the age of 50 in the UK took part in our survey. a year later, her second baby and her daughter Branwen, they were European Medicines Agency (EMA) on the conversation is ongoing. was born with six toes on each able to explain the impact of sodium 26 September. This was the first time Clare has also written to Arlene 661 of them were taking sodium valproate. of his feet, an underlying valproate. the EMA had held a public hearing as Foster, leader of the Democratic Results shown are for this group of women: jaw and, when his teeth came Deborah was prescribed 5,000mg part of a safety review of a drug. Unionist Party and First Minister for through, eight of them were of sodium valproate during pregnancy. Other broadcasting channels had Northern Ireland. Ms Foster has black and rotten. Both her daughters – Branwen and her been reluctant to follow up the BBC's pledged her support for Epilepsy Michelle says: 'I had a scan and sister Rhonnie – were born with exclusive on sodium valproate, but Society's campaign for mandatory the hospital told me that because physical and neurodevelopmental they waited for their moment to come reviews for women taking valproate. I was on Epilim (sodium valproate), disabilities. Branwen knows that she at the hearing. Clare Pelham was But we could not have done it I would have to get rid of the could die at any time. submitting evidence at the hearing on without you. By taking 15 minutes baby. They said it could be born Clare was then whisked to a garden behalf of Epilepsy Society and Epilepsy to fill in our survey over the summer, 20% did not know that 70% had not received the with cerebral palsy. I refused. near the BBC for a walk-and-talk Action, and again the statistics from you have enabled us to raise the voices sodium valproate can valproate toolkit materials I asked why I hadn't been told interview with the BBC One O' Clock our survey were presented to an of all women and girls taking sodium about the dangers around Epilim News (above). By this time the World audience of healthcare professionals valproate, throughout parliament, affect the health of released in February 2016 but they said because I was Service were calling and we hurried and women from across Europe. across Europe, and across all forms babies exposed to the young, they didn't think I would back to BBC Broadcasting House. Clare was again interviewed for the of media. get pregnant again. But in the short, 10 minute walk, news BBC and also ITN with Channel 4 and For more than four decades, women drug during pregnancy 'I was very relieved Stephen broke that Uber had lost its licence in Sky News also picking up the story. have too often been prescribed sodium didn't have cerebral palsy. I really London and the news agenda moved We are expecting results from the valproate without being told of the full feel he was one of the lucky ones on. We were dropped. hearing to be announced soon. risks during pregnancy. The result has but as a baby and toddler he The BBC took complete ownership On 13 October we also learned that been thousands of babies born with 14% had not seen a had to have a lot of operations of the sodium valproate story. Their Norman Lamb MP had been successful avoidable disabilities. to correct his problems. two journalists, Sophie Hutchinson and in tabling a motion about sodium We are as close as we have ever healthcare professional 'I feel absolutely furious that Nicki Stiastny had been working closely valproate in the House of Commons come to ensuring that all women and in 2017 I wasn't told about the side with us at Epilepsy Society since last on 19 October. With just six days to girls are given the full facts, in a timely 33% had not been given effects of Epilim. When I hear year, assimilating facts and building prepare, we were able to brief MPs, manner and on a regular basis, so that any information about about mums with Epilim and they can make an informed choice the risks associated what they go through, it is But the world is listening and we won't let about their treatment and pregnancy. heart-breaking. It is terrible For some women – those for whom with the drug during to be given a drug for a severe politicians and policy makers off the hook. sodium valproate is the only drug that pregnancy illness and not be told about We feel cautiously confident that issues around will control their seizures -– that choice the side effects.' remains a difficult one as is so often 51% had not been Michelle is now taking a sodium valproate will finally be resolved. In fact the case with epilepsy. given information different epilepsy medication we know they will, because we won't stop until But the world is listening and we and a year ago gave birth to won't let politicians and policy makers about contraception a healthy baby girl, Thea. they are. off the hook. We feel cautiously

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 18 MEDICAL 19

When the EEG is being recorded, the physiologist will try to help you feel more relaxed. They may either ask you to perform certain simple tasks such as closing your eyes, or they may carry out special tests. This might include a test with flashing light stimulation to see if you are photosensitive. A video recording is often carried out with your EEG to help us coordinate the events with your brain activity. Even if you have epilepsy, an EEG like this can be completely normal and if your doctor feels it is necessary, a longer one might be needed. Your brain activity changes a lot in sleep and we sometimes try to include this, particularly in children. Where diagnosis is difficult or treatment with surgery is Spikes can often be seen in people with epilepsy and they being considered, prolonged EEG recording may be carried are useful because you don’t need to be having a seizure out in a hospital video telemetry unit (see image, left). This for us to see them. In particular, their location is important is to try to capture your typical seizures both on video and and this is useful in helping us to decide what type of EEG at the same time. Sometimes people may have an epilepsy a patient may have. ambulatory EEG where they take the EEG home for 24 hours. In this case there will not be a video recording. How is it used? Alongside the EEG we also record a simplified sample of EEG reports will give our impression to your neurologist Understanding an ECG (electrocardiograph for monitoring the heart) about what we found in your EEG. This will include . whether it was normal or not and whether we saw any Interpreting your EEG spikes or seizures you weren’t aware of. We may also After the test is finished, the physiologist writes a be able to provide information to help classify your summarised description of your EEG patterns. The EEG seizures into a particular type of epilepsy, which may lead is then analysed by specialist doctors called clinical to different choices of treatment. neurophysiologists, who write a report based on your EEG the clinical information they are given about the patient Dr Arjuna Nagendran is a clinical neurophysiology for the doctor who requested it. specialist registrar at the National Hospital for Neurology and Neurosurgery, Queen Square, London. EEGs are an important test in helping to diagnose epilepsy. What does it look like? Below is an example of about 15 seconds of a normal adult Here, Dr Arjuna Nagendran explains what the test involves EEG. Each horizontal squiggly line represents the electrical and what it can reveal about electrical activity in your brain activity beneath two of the electrodes on the scalp and the Inside your brain exact appearance changes from one second to the next. The EEG is one of the most important investigation tool ever since. The normal appearance changes a lot in childhood and Frontal lobes – the area at the front of the brain, common investigations then more slowly as we get older. behind the forehead. The frontal lobes are responsible performed for people The EEG appointment Figure 1: shows 15 secs of a normal EEG while the for voluntary movement, conscious thought, learning, with epilepsy. EEG stands EEG recordings are performed in neurophysiology patient is awake, but with their eyes closed. At the bottom speech and personality. for electroencephalograph departments, by a physiologist trained to perform these of the trace, in red, there is a recording of electrical activity and means an instrument procedures. The typical EEG lasts around 20-40minutes from their heart. Temporal lobes – the areas of the brain at the side of for writing or recording although recordings can be extended to include sleep. the head, above your ears. The temporal lobes are electrical activity within Special sensors, called electrodes, can detect the responsible for making memories and remembering, the brain. electrical activity from beneath your skull and a number and emotions. They are also involved in speech, hearing A neurologist, or another of these – usually 25-30 – are positioned on different and perception doctor, may request an EEG places of the scalp, stuck on using a special gel. for many reasons, but for These electrodes are put in specific positions on the Parietal lobes – the area of the brain at the top of your people with epilepsy this is person’s head, which means that individual electrodes head behind your frontal lobes. The parietal lobes commonly after a first seizure can record the activity from different areas of the brain. control how we feel and understand sensations. They to help establish your diagnosis or after further seizures When the technician or doctor is looking at the results also control how we judge spatial relationships, our to help classify your epilepsy type. of the EEG, they can tell what brain activity is happening, coordination and our ability to read, write and do Human EEG was devised and first recorded by Hans and where in the brain it is happening. maths. Berger in Germany in 1924 and it soon became apparent Each electrode has a number; all the odd numbers are that this represented the coordinated electrical impulses on the left side of the head, and the even numbers on the Occipital lobes – the area at the back of the brain. of brain cells. Within around 10 years, scientists were right. The electrodes also have a letter, depending on the In patients with suspected epilepsy one of the main things They are responsible for our sense of sight: receiving demonstrating both that “spikes” on the EEG could area of brain that it is recording from: F for frontal lobe, we look for are unusual sharpened changes, commonly information from our eyes and translating it into what be seen between seizures and that particular seizures T for temporal lobe, P for parietal and O for occipital lobes. referred to as spikes' but also called epileptiform discharges, we see around us. called “absences”, involving blank spells, had a clear The letter Z is used for the line of electrodes sited on the In figure 2 (next column), the EEG shows spikes over the EEG pattern to identify them. EEG has remained an midline of the head. right side of the brain, seen during sleep.

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 20 WAYS AND MEANS PROBLEM SHARED 21

independence of my own car instead of relying on others for lifts, or hanging I was diagnosed with epilepsy following a car around for what is a very sparse bus Personal Independence accident 15 years ago. The diagnosis meant system, but I just have to get on with it. The real problem is that Government I lost my licence and job as a lorry driver. and planners assume everyone can Payments (PIP) The medication I take now works well, and my drive to the shops, work, swimming last seizure was more than 10 years ago. I was able pool or cinema, but we can't. It is a failure of our system that nationally to get my licence back, but I would like to get my we have such a poor or non-existent In recent months the Government announced group 2 licence back and drive for a living. public transport system. changes to two benefits – Personal Independence It is my choice to live in the The DVLA said I would not be able to apply countryside but this is where my Payments (PIP) and Universal Credit. Here, our because I still take medication for my epilepsy. friends and life are. If I moved to the social affairs adviser, Peter Hand, looks at what And the regulations say that you must be seizure city, I would be able to get around but wouldn't have anyone to visit. At least the changes will mean for people with epilepsy free and not taking medication for 10 years. I'm not polluting the environment. This seems really unfair. Should I stop taking Jack, Lincolnshire Personal Independence may be entitled to more money. They • a reduction of the waiting period for my medication, or will the seizures come back? Payments (PIP) will then contact those people who the benefit from six weeks to five as To find out more about driving At the beginning of November the are affected and all payments will of February 2018 Tony, Bristol regulations and how they affect you, Government announced a variety of be backdated to March 2017. • easier access to advance loans, with go to epilepsysociety.org.uk/driving changes to the guidelines used for If you already receive PIP, it is likely claimants able to get a loan of 100 assessors of Personal Independence that your claim will be reviewed to per cent of their monthly payment, Payments or PIP. These might make the check that the new guidelines are up from the current 50 per cent process for claiming the benefit better being adhered to – however it is not • an extra two weeks' housing benefit for people with epilepsy. clear how long the review process for for those who receive housing support Your replies Next issue We are hopeful that the revised everyone will take. The Government • and rent reforms which will mean guidance should mean those making has also said that people with epilepsy claimants can now get rent paid It sounds like you have waited so It's great that you haven’t had I used to have seizures every week the assessment will be better placed who were unsuccessful in claiming PIP directly to their landlords if they long to be able to drive again, it may a seizure for 10 years so don’t stop but now I generally only have one to understand the impact of epilepsy – from 9 March 2017 onwards – will wish, to reduce the risk of falling not be worth the risk of coming off taking meds and risk changing a month. But the trouble is, on someone’s everyday life. also receive a review of their original behind. your medication so you can drive that. Just enjoy what you have. because I can't predict when the Under the new guidance, assessors assessment. for a living. Andy, Leeds next fit will happen, I get nervous will have to take into consideration We are hopeful that the new rules Universal Credit is the Government's Although a job is at stake, coming about going out. claimants' abilities to carry out should be better placed to take into new monthly benefit whereby six off the medication may have an impact I was a driving instructor but I had a seizure in the unsupervised daily tasks safely. This consideration the complexity of means-tested benefits – housing on other areas of your life, too, and had to give up teaching when I was supermarket recently and means some PIP claimants could epilepsy and the impact of seizures. benefit, income support, income- may make it more difficult diagnosed with epilepsy. My seizures although the staff were lovely, receive higher benefit rates. We hope they will make it easier for based jobseeker's allowance, income- to live life to the full if your seizures are now under control and I am able I felt really embarrassed. I don't The Department for Work and people with epilepsy to receive what related employment and support were to come back. to drive again, but I would not want like sharing my problems with Pensions (DWP) made the changes they are entitled to, and so live more allowance, child tax credit and working Sarah, London to risk driving commercially, even friends and if they invite me out following a recent legal decision on the independently. tax credit - are replaced and all rolled if I was allowed to. I usually find an excuse not to go. interpretation of people’s needs for into one single payment instead. If your medication is working it I am now working in the online I know I'm probably being silly, supervision in order to carry out Universal Credit Universal credit is being rolled out doesn’t make sense to stop. Especially shopping department of a local but I have lost all my self-confidence. activities safely. Also in November the Chancellor nationally on a gradual basis and the as you don’t know what affect that supermarket, and although it's a I wonder if other people have In a written statement to the announced a series of measures in his Government intends that all new could have on your seizures. And 10 complete career change for me, I'm experienced this and how they Commons, Penny Mordaunt, the budget, designed to improve the roll claimants for the benefit should be years is a long time to wait. Have you really enjoying having colleagues to overcome it. former minister of state for disabled out of Universal Credit. able to claim it before September thought about looking at other jobs? work with. Driving used to be quite Donna, Manchester. people, health and work, said this Universal Credit is a single benefit that of next year. You never know, you could find a lonely profession. would increase entitlement for a replaces six other benefits for those who For those people currently claiming something you enjoy doing more. And Mark, Reading WOULD YOU LIKE TO SHARE number of new and existing claimants, are out of work or on a low income. any of the six benefits listed above, at least you can drive! YOUR THOUGHTS WITH DONNA? ‘largely those with conditions such as The new work and pensions the Government says the change to Stacey, Brentwood. It's a tough one when epilepsy gets Or do you have a question to epilepsy, which affect consciousness.’ secretary David Gauke, said the Universal Credit will not take place in the way of your life but I would just ask our readers? Email nicola. The Department for Work and measures meant the benefit would until at least 2019. However, if there is I don’t know much about driving enjoy the fact that you can at least [email protected]. Pensions (DWP) estimates that around become fairer and more generous and a change in someone's circumstances, rules, but I do know that stopping drive. For so many of us, me included, uk, write to Editor, Epilepsy Review, 10,000 claimants will benefit by do more than just cut waiting times for they might be moved onto it sooner. meds can be very dangerous. You’d be I have never had a licence. Every Epilepsy Society, Chalfont St Peter, £70-£90 per week by 2023. claimants applying for the benefit. at risk of having a fit and loosing your time it gets close to me being a year Bucks SL9 0RJ, or reply at : The DWP will be going through all Improvements to the benefit You can follow Peter Hand on Twitter licence completely if you did. seizure free, the inevitable happens. facebook.com/epilepsysociety existing cases to identify anyone who include: @HandMadePeter Carole, Swansea I would love to have the

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 22 AND FINALLY EPILEPSY SOCIETY 23

Good news Tonic comic all round

Stand-up comic and all-round funny girl The year now starts with ‘Veganuary’ (go vegan), then ‘Februhairy’ (grow your hair for charity..?) all the way Juliet Stephens has the last laugh when through to Steptember (walk more), Stoptober (stop it comes to her epilepsy smoking), Movember (grow a moustache) and Decem- Santas' hopes dashed beard (yes, this really is apparently a thing). but Clare's not beaten 2017 is behind us. It’s over, the Christmas leftovers are I wonder if Epilepsy Society might launch ‘Aprilepsy’ – It's good news all round at Epilepsy finished, the cut-price Advent calendars have all been either an awareness and fundraising month with programmes to Society, as Micholls House, one of our sold to bargain-hunters like me or squashed into landfill. educate people with what to do in the event of a seizure, It was with a heavy heart that we had to cancel our first ever Festive Family six residential care homes for people So what are your hopes for 2018? A fit-free year? and to be aware of how having epilepsy affects? with epilepsy and learning difficulties, A reduction in meds? Talking more openly about your Yes, it’s a bit corny, not to mention an assault on the Fun Day on 10 December due to snow. The day included an ice rink #Giving Tuesday was rated 'good' in every area by the epilepsy? Committing to wearing a Medic-Alert bracelet? English language – but the spirit is right. A short-term Care Quality Commission (CQC). Finally getting your driving licence? Running a marathon resolution is achievable, and may even be fun. If talking and a 2km Santa Dash, but with A massive thanks to everyone who Inspectors from the CQC paid an for Epilepsy Society? (They’d love to hear from you!) about having epilepsy is difficult, perhaps a month of Epilepsy Society based in the Chiltern donated to us on #Giving Tuesday unannounced visit to the home for up Despite starting in the dead of winter, the new year does awareness raising activities might give you the opportunity Hills, snow quickly rendered all roads (28 November ). For 24 hours only, to 20 residents in October and found have a feeling of springtime optimism about it. 'New Year, to talk more openly about it. impassable. Facebook was doubling all donations the services to be safe, effective, New Me,' people say, as if the shift from Sunday to Monday It’s also important to remember that – you know what Not to be beaten, our intrepid chief made to Epilepsy Society via their caring, responsive and well led. will miraculously bring about a personality transplant. – maybe you absolutely don’t need any flipping executive Clare Pelham, decamped to pages, with an upper limit of £400 CQC inspectors said people were 'This year it’ll be different,' people say, resolutions at all. Maybe accept that you’re good her local gym and notched up more per person. This meant that on one happy with the care and had positive unconvincingly, an anxious furrow in their brow enough and beautiful just the way you are. In a than her planned 2km on the day we raised £1,595 through your relationships with staff. Relatives were betraying their confidence that dawn jogging society which tells us all the time that we ought treadmill, raising over £1,000 for our donations on Facebook and £813 also happy. One relative described is something they’ll suddenly discover was to be and look different, acceptance is the research. You can still sponsor Clare through Just Giving, making a total it as:'Home from home where missing from their lives. greatest challenge! at justgiving.com/fundraising/clare- of £2,408. my family member is happy.' It is a time of resolution and good Back to the new year. We will soon pelham intentions but it’s not realistic. It’s a be entering the Chinese Year of the cruelty that at the coldest, darkest time Dog. I used to have a dog called Holly. Generous gift furthers of year, when we are at our fullest, fattest We were a lot alike: dark hair, brown eyes, and laziest, we feel we ‘ought’ to be out in friendly, loyal, greedy. We also both had epilepsy. our research public in tight fitting clothing, doing unfamiliar We both felt a frustration at not being able to exercises that our bodies are not used to. drive, instead having to hang around the front door Thanks to a Other animals sensibly hibernate at this time of year looking mournful, waiting for Mum or Dad to drive us grant from The and we’re heading out to a Park run!? So if you’re feeling to the park. We were kindred spirits, Holly and I; we Hospital Saturday blue having already trashed your resolutions, do not fear. shared so much – though I drew the line at sharing meds. Fund we have Personally, I’m not one for resolutions – they seem to me I always made sure that when my neurologist wanted to bought a brand a cruel and elaborate trick of delusion and guilt. We even try something new, that it wouldn’t be something that new freezer for have a proverb to describe it: ‘The path to hell is paved with Holly could ‘share’: typical sibling jealousy. storing DNA good intentions.’ HELL, guys, Hell! Let that be a warning to It has been several years now since Holly died, and samples. you. Resolutions will make you feel miserable and maybe though of course she is irreplaceable, she is very fondly The freezer Do things by half also lead to flaming molten sulphur. remembered. One of my hopes for 2018 was to get a dog. operates from a That’s not to say I’m not one for self-improvement, Obviously this is very much a lifestyle choice and not a temperature of -40°C to -86°C and Do you fancy running for Epilepsy Gus the gnome though. On the contrary, I think taking on personal resolution. It’s only because of the accumulation of big the racks store 5000 samples of DNA Society but don't quite feel up to a challenges, trying new things, changing up the routine, and small choices in recent years: moving to a house in 2ml tubes. marathon? Then why not sign up for spots Tree-sa May these are all terrific things – just keep it realistic. near a park, feeling more settled in my life and having a This gives us the opportunity to The Big Half on 4 March 2018. This is So I urge you: if you do have a resolution, resolve only to partner to share the load, that I'm even considering this. increase the recruitment of patients, a fantastic new 13.1 mile run from We were very proud to be part of do it for one month, one week or even one day! Not for the But since learning that the Chinese new year is which will in turn benefit the patients Tower Bridge to Greenwich and it this year's fundraising Christmas whole year or, Heaven forbid, the rest of your life. Be kind dog-shaped, it now suddenly seems like destiny. and improve our research looking at costs just £1 to register. Tree Festival at St Luke's Church, to yourself, take it one step at a time. Doing something for That’s what I’ll tell my husband. It’s destiny. An Ancient the underlying causes of epilepsy and We will support you with a T-shirt, Maidenhead, in the constituency 30 days is achievable. And if it’s tough, do it in February, Chinese prophecy. Yeah, that should persuade him. individual reactions to treatments. running vest and fundraising pack, of prime minister Theresa May. the shortest of all the months. The Hospital Saturday Fund helps and just ask you to raise £500 to Gus, our beady eyed gnome had You may have noticed that in recent years various causes people with medical conditions and support our work. To find out more, pride of place on top of our tree have hijacked our calendar. The same calendar that has disabilities and supports medical call Team Purple on 01494 601414 and spotted Mrs May admiring served us for thousands of years has become hostage to JULIET STEPHENS projects of health charities in the or email fundraising@epilepsysociety. her own tree, decorated with people becoming a better person or creating a better world. LAUGHING ALLOWED UK and Ireland. org.uk her trademark stiletto heels.

Epilepsy Review issue 19, 2018 Epilepsy Review issue 19, 2018 join us for the biggest and comfiest purple day ever!

Fundraise in your PJs and help change the lives of people affected by epilepsy.

40mm

Find out more and order your free Pyjama Party fundraising pack online at epilepsysociety.org.uk/ purpleday

Issue 15, Spring/Summer 2016 Issue 12, Spring 2015 Issue 11, Winter 2014/2015

FAMILY FAMILY CULTURE

Laura Grainger talks about How exercise can help with Supermodel and actress her memory loss your seizures Agyness Deyn talks about Me and my epilepsy, page 6 Exercise and you, page 6 her new film Electricity Epilepsy – the film, page 6

CAMPAIGN WELLBEING MEDICAL

How 39 per cent of The menopause – will it affect Ongoing seizures? Side effects? premature epilepsy deaths your epilepsy? Dr Fergus Rugg-Gunn explores could be avoided Dr Dominic Heaney explains, page 8 your options Speak up for epilepsy, page 8 When the AEDs don’t work, page 8

MEDICAL GOVERNMENT WAYS AND MEANS

Osteoporosis and MPs call for better epilepsy How to find an epilepsy anti-epileptic medication services and more funding service near you a full life for everyone Should you be worried? page 18 Epilepsy in parliament, page 18 Our new interactive map, page 20 affected by epilepsy epilepsysociety.org.uk epilepsysociety.org.uk www.epilepsysociety.org.uk www.epilepsysociety.org.uk 01494 601 300 11751-ER-Issue15.indd 1 11643-ER-Isu12.indd02/06/2016 13:38 1 11598_ER-Isu11.indd18/03/2015 14:51 1 11530_ER-Isu9-OL.indd18/11/2014 14:38 1 04/02/2014 18:11 Epilepsy Review magazine Confidential Helpline – 01494 601 400 If you would like to receive future copies of Epilepsy Review, Monday and Tuesday 9am to 4pm, Wednesday 9am – 7:30pm. call our membership office on 01494 601 414 or visit National call rate. Information and emotional support. epilepsysociety.org.uk/membership