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. Many companies epilepsy, climate change can make “In the past weeks, there has been are holding stocks beyond the six them more vulnerable to potentially speculation in the media about weeks’ additional buffer requested. life-threatening seizures. potential shortages of treatments This is one part of the multi-layered Anecdotal evidence suggests for epilepsy and suggestions that approach we have put in place. that heat waves are particularly these were linked to our exit from “I am also aware of speculation dangerous for children and adults the EU. I know that this has caused about the impact of the with Dravet syndrome, a severe worry for many with epilepsy. introduction of a Serious Shortage form of childhood epilepsy. “Recent supply issues are in no Protocol on patients with epilepsy. Writing in The Lancet Neurology, way linked to our exit from the EU. This is a tool to manage supply the neurologists said that during Medicine supply problems can issues when all other measures the hot summer of 2018, parents occur for a wide variety of reasons, have been exhausted and would Dr Wendy Jones describes the of children in the UK with this and the Department of Health and only be issued if clinicians think it genomics work we carry out at syndrome reported that their Social Care has well-established is appropriate. This is a business the Chalfont Centre. See page 16. children were experiencing more procedures to deal with shortages. as usual policy, and is not linked A big thank you to Peter Hook, seizures and increased lethargy. We work closely with manufacturers, to our exit from the EU. A protocol bassist and co-founder of post punk And in Australia, a girl with the NHS and patient groups. We will never be used to substitute a Joy Division, who auctioned off Dravet syndrome who had been have (also) been working with the treatment for epilepsy. In the event DRUG CHANGES the band’s archive collection in seizure free for two years, died after Epilepsy Society and wider NHS. of a supply issue, a patient with memory of lead singer Ian Curtis. walking in temperatures of 46.5 0C. “We continue to work to ensure epilepsy would always be referred Pregabalin and Ian had epilepsy and took his own The neurologists have formed that there will be no impact on back to their prescriber.” life at the age of 22. Part of the a consortium, ‘Epilepsy Climate gabapentin are medical supplies caused by our Whatever the Brexit outcome, proceeds were donated to support Change’, with a mission to act now exit from the EU. If we leave under it is our priority to make sure the now class 3 drugs Epilepsy Society’s helpline. as the effects of climate change the Prime Minister’s Withdrawal supply of medicines can continue If you have been prescribed manifest themselves. Agreement there will be no changes uninterrupted. I will continue to work gabapentin (Neurontin) or pregabalin They say air travel is possibly to our current trading arrangements tirelessly to ensure this is the case.” (Alzain or Lyrica), it is important to epilepsysociety.org.uk/hooky one of the biggest contributors Paula Sherriff, MP and Chair of be aware that these medications to carbon emissions in their the APPGE, talks about epilepsy MEDICATION have been re-classified as on one prescription community. They estimate travel awareness to mark Purple Day. controlled drugs. • You must collect medicines to 1500 medical meetings each Ongoing drug shortages This will affect the way in which from the pharmacy within 28 days year, could result in 3m tonnes you can get these medications. of the date on the prescription of carbon dioxide, equal to the As soon as Epilepsy Society is made and 100mg. These will be in stock You will generally have to get a • Any medicine ‘owed’ to you annual emissions of Madagascar. aware of supply issues with any as soon as possible. written prescription rather than by the pharmacy must also be Professor Sisodiya said: epilepsy medications, we publish • Oxcarbazepine 150mg tablets will picking it up electronically. collected by that date “Conferences are important. But we details at epilepsysociety.org.uk/ be discontinued in October 2019. Your GP and local pharmacy • Some GP practices may not must also consider ways to off-set news and share these via The 300mg and 600mg versions will ensure you continue to get be able to send prescriptions our carbon footprint. We should social media. have been discontinued. the medicines you need. Please electronically to the pharmacy consider reducing the number of There are still ongoing supply • Carbagen 200mg and 400mg remember to order your medicine • All patients will need to request times we fly. We don’t have time issues with the following drugs: Immediate Release Tablets until ahead of time. repeat prescriptions from their to sit back and wait while the • Epanutin (phenytoin) Infatabs mid 2019. There will also be some changes GP practice. It will no longer be temperature rises. We owe it to our 50mg from 1 May through Brothers Billy and Danny Knight • Carbagen 200mg and 400mg to the rules around these medications, possible to get your medicine patients and our planet to come to November 2019. are now seizure free after a Modified Release Tablets until including the following: from the pharmacy using repeat up with effective solutions now.” • Topamax (topiramate), 25mg genetic diagnosis. See page 17. late 2019. • Only 30 days’ supply is allowed or ‘batch’ dispensing.

4 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 5 YOUR STORIES

Me and my epilepsy

Clockwise from far left: Amanda in Epilepsy Society’s art therapy studio; two cheeky grins Amanda Smith with her brother as children; delivering a painting for the Queen to Buckingham Palace; support from her mum; and from her dad.

Amanda Smith explains how picking up when he knew I was having a bad By this time I had been independent. But it’s hard to be seizures at some point. day. If I wasn’t feeling well I was diagnosed as having both epileptic independent when you have no a paintbrush has helped her overcome always allowed to go home. and non-epileptic or dissociative car, no job and you have a health Music and mood seizures. The psychological impact condition. Having a carer I never plan anything when I am the anxiety and depression that go Medication changes of epilepsy and trying so many is a major change painting. It is just what comes My seizures were not improving. drugs is huge. You lose sense in my life. out on the canvas. I let my hand in hand with her epilepsy. And I was having a lot of absence or of who you are. You don’t know subconscious guide how painting has become her lifeline focal seizures. I would get a rising your place in the world. You Art is my me. If I am listening feeling and my body would jerk become isolated and live a life of lifeline to Prodigy, the through art therapy at our Chalfont Centre and tense for about 30 seconds. ‘what if?’ What if I step outside my The one thing painting can be I was admitted to the Sir William front door and have a seizure? that has kept very black and Gowers Centre at Epilepsy Society me alive is grey. If I have easy Diagnosis It was then that she noticed where I underwent several drug Anxiety and depression art therapy. going music then I was first diagnosed with epilepsy I was just wandering around. changes to try and sort out my Many times I have wished to give I first started the paint tends to at the age of 23 but I think I had medication and improve my up the fight and admit defeat. painting at flow and be probably been having seizures all Epilepsy didn’t hold me back seizure control. These altered I have had anxiety and depression Epilepsy brighter. Each colour through my childhood. I had a lot At first I didn’t let my epilepsy hold the pattern of my seizures. One and suicidal thoughts. I have also Society’s art represents where I am of déjà vu experiences and would me back. It was controlled for medication change led to me been diagnosed with borderline therapy centre. in my life. Pink and often smell freshly cut grass a period of time, then I started having 50 seizures a day – mainly personality disorder which is Initially I didn’t know yellow show there is hope, when there wasn’t any around. having four or five seizures a year absences. I was literally laid out another hurdle I am trying what I was doing. But now but the blue is a reminder that But I thought all children felt that. in spite of being on the maximum on the sofa – I could not move. to overcome. art is a lifeline for me to express not every day is easy. I had my first tonic clonic dose of drug. I would still go After several different drugs myself. I switch on the music, I would say that now I am on seizure when I was on holiday on travelling by myself, even though we eventually got my seizures Losing my independence switch off the world and just paint. the road to recovery. My attitude is my own in Majorca. I just thought I knew I ran the risk of a seizure. down to eight or 10 a day. Now I have a carer 17 hours a I can’t verbalise my emotions a bit more if something happens, it was a panic attack. It was I once woke up in hospital in New week, including every evening so but art is a distraction and it happens and I will deal with it. only some time later when I had Zealand thinking I should be at home. Losing sense of myself that I can have a shower and dinner. I talk about what I am doing. This is the hand I have been dealt. another seizure in the car with I was working as an office In October 2017 I left my job as Food can be a trigger for my I tend not to have seizures now But it’s still tough. I haven’t totally my mum that we started to think manager in the head office of high I was no longer fit for work. It was seizures and I can’t use the oven when painting, but occasionally accepted it. I am still learning something was wrong. I said I felt street retailer TK Maxx and they a joint decision and TK Maxx said in case I forget to switch it off. they happen because that is to try and overcome things ill and Mum told me to get out were really supportive of me. My that if I wanted to come back they It’s hard to rely on others when the uncertainty of my life. Every that stand in my path and of the car in case I was sick. manager was amazing, particularly would find me something suitable. you have been used to being day tasks get interrupted by not let them destroy me.

6 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 7 RESEARCH Medicine shortages e know that many of of pharmacists, working within the Download our letter Department of Health and Social you are experiencing to your pharmacist We are receiving problems accessing Services (DHSC) to address supply If you are having problems issues as they arise. DHSC many calls to our your epilepsy accessing medication from your Wmedication. Understandably this recognises that medicine regular pharmacy, you might like to Helpline, alongside can cause real anxiety and stress. shortages are an ongoing issue take your prescription to a different and they are introducing new We also know that uncertainties pharmacy instead to see whether online enquiries, around Brexit are adding to the strategies to help tackle the they have stocks of your problem. This includes the from people who concerns with people worrying medication. If your epilepsy drugs about whether they will be able introduction from January are part of a prescription for this year of new mandatory are experiencing to continue to access their several different medications for medication once we leave the requirements which mean that difficulties in getting other issues, you could ask your manufacturers must notify the European Union. GP in advance for a separate Epilepsy medication is vital. The DHSC as soon as there is a supply their epilepsy prescription for your epilepsy shortage of a particular medication. last thing you want to hear when medication – even a handwritten medication. Here, you go to pick up a prescription This gives the Medicines Supply from your pharmacist is that they Team time to conduct a thorough our Medical Director can’t get hold of the medication Take your risk assessment and help to Professor Ley or are out of stock. prescription resolve the shortages, hopefully But medicines shortages are minimising the impact on people Sander looks at the an ongoing issue. There are many to your pharmacy up such as yourselves. reasons why drug shortages occur to seven days before We are in close contact with the problem and explains (see box, page 10). But the key team, sometimes on a daily basis thing is that you take sensible you actually need when there is a particular issue what you can do which needs communicating. precautions to allow for the fact the medication. to manage the that there may be issues with So by checking our website and accessing some medications. following our social media situation and how And that starts with talking to rather than electronic prescription. channels, we will be able to bring your GP or epilepsy specialist That will make it easier for you to you the most up-to-date information the Government and, most importantly, building take it to different pharmacies if about any current supply issues is tackling current up a good relationship with you experience problems. relating to epilepsy medication. your local pharmacist. We are in touch with the shortages One of the most useful pharmaceutical industry to Worries around Brexit measures you can take is to emphasise the importance of Brexit has been looming over us ensure that you take your people with epilepsy receiving for almost three years now and prescription to your pharmacy a continuous supply of their the uncertainties around what will in good time – up to seven days medication. And, if you wish to, you happen if and when we leave the before you actually need the can download a letter on our website European Union have certainly medication. That way, if the to take along to your pharmacist exacerbated worries around pharmacy does not have your supporting this (see box, page 10). medication supply. drugs in stock, it gives the The Government has put in pharmacist time to order stock What the Government place contingency plans to ensure from suppliers or to ring other is doing? that manufacturers have at least pharmacies or suppliers, The Government has a dedicated a six week supply of medication to access your medication Medicines Supply Team, made up to cover all eventualities. You can elsewhere.

8 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 9 YOUR GUIDE treatments have been excluded It reaffirms from this type of protocol. The Government appreciates that it the importance could be dangerous to switch of reading the label someone between different therapeutic or generic versions of on your medication their drug, and so any changes to before you leave the medication will have to be done by the person’s prescriber after pharmacy… so you consultation with them. However, in extreme can be wise to any circumstances, if it was necessary changes… APPG on to ration medication, there may be no option but to dispense a different strength of a drug. reading the label on your For example, if you are usually medication before you leave the prescribed 400mg of a medication pharmacy, even if you have been and that strength is not available, taking the same medication for Epilepsy it might be necessary to prescribe many years. It is always better read this on our website (see box 2x200mg of the drug instead. to be wise to any changes so you below). You can also read in more Similarly, if a medication is in can ask the pharmacist about detail Government plans to ensure short supply, it might be necessary them while you are still there. that leaving the EU does not to dispense a reduced quantity of As a patient, you are entitled not impact on supplies of medications. an epilepsy drug. This could mean to accept a changed prescription that instead of having a 28-day but to refer back to your GP. Why you shouldn’t supply of a medication, you might However, these protocols would All Party Parliamentary Groups (APPGs) The All-Party Parliamentary stockpile medicines be asked to pick up a lower only ever be used where there was Group (APPG) on Epilepsy is a But I know from conversations quantity, for example just 14 days a real crisis, in order to ensure that are an opportunity for you to engage with cross-party group of MPs and in clinics that many patients are supply from your pharmacy. This available medication was sensibly democracy, make sure your voice is heard Peers who represent all political finding ways to stockpile their could be because more supplies rationed to everyone’s benefit, so parties with an interest in epilepsy. medicines themselves. We are expected in a few weeks’ time this must be taken into consideration. and encourage your MP to make other The group was set up to raise understand people’s concerns, and you would need to get a new awareness of issues around however this has the potential to prescription. Or if new supplies Keep calm and carry on members – and parliament – aware epilepsy among parliamentarians and to engage with individuals create a shortage of medication are not expected, it would give you There is a much used slogan that of issues that are of concern to you. Our and organisations in supporting itself. It could mean some people enough supply to continue your crops up in every walk of life at the and promoting the concerns may not get the medication they medication while you make an moment – keep calm and carry on. Communications Officer Rhia Arden finds of people with epilepsy. need. It is important for everyone appointment with your clinician But I think in this circumstance This year, our friends at to stay calm and follow their to consider an alternative. it is true. There are medicines out what the APPG for epilepsy does. Epilepsy Action provide the normal routine when it comes to shortages across all health secretariat for the APPG on getting a repeat prescription. conditions and sometimes this Make sure you Did you know that you can attend Epilepsy, helping to run the group DHSC’s post Brexit contingency involves epilepsy drugs. But there read the label All-Party Parliamentary Groups on behalf of the Chair, Paula plans are the most effective way are dedicated experts whose sole These sorts of scenarios underline (APPGs) to become involved Sherriff, MP for Dewsbury to ensure that everyone has a job is to monitor and mitigate for the importance of making sure in discussions and influence in West Yorkshire. consistent supply of their these shortages and if we can all that you get to know your local politicians about issues that Paula has been the Chair medication. just stay calm and breathe through pharmacist and that they are are important to you? for over 18 months and has a Brexit, I cannot guarantee that the aware of the importance of letting There are almost 700 APPGs personal link with epilepsy as her problems will go away, but together Serious Shortages Protocol you know of any changes . But it in the UK covering all different father has the condition. Paula You may have read about the we will cope. We are on your side. also reaffirms the importance of concerns and issues. They is passionate about supporting Serious Shortages Protocol that have no official status within the condition in parliament. has been put in place to deal parliament, but are run by and As Chair of the APPG on with any serious shortages for members of the Commons Epilepsy, her role includes of medication. This gives Find out more Go to epilepsysociety.org.uk/shortages to find out: and Lords. They often involve speaking to constituents whose pharmacists the power to Why drug shortages occur individuals, campaign groups, family members have epilepsy, dispense alternative drugs if those Download our letter to your pharmacist Rhia Arden is our new charities and other non- and raising awareness and prescribed by the GP are in short Go to epilepsysociety.org.uk/contingency-plans to read: Communications Officer governmental organisations in understanding of epilepsy. supply after Britain leaves the EU. Brexit contingency plans at Epilepsy Society. She has their administration and activities. She explains what she would This would only be used in completed an MA in Journalism, And you can ask your local MP to like to see this APPG achieve: “I exceptional circumstances and the If you are experiencing anxiety around medication and would like to talk to someone, please call our Helpline on 01494 601400 (Mon-Tues 9am-4pm, Wed 9am-7.30pm). Media and Communications attend an APPG you care about would like to stop people feeling good news is that in part, epilepsy at Cardiff University. and to feedback to you. uncomfortable about epilepsy

10 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 11 and to see more awareness men with epilepsy who were said around the condition”. to be at greater risk of premature There are around Paula Sherriff talks epilepsy Vice-Chairs supporting the death. Members of the public said APPG on epilepsy are: Dame Cheryl men feel stigmatised because 700 APPGs Gillan MP, Valerie Vaz MP, Sir David they don’t want to take anti- in the country Members of the Amess MP and Baroness Hussein- epileptic drugs due to side effects APPG on Epilepsy Ece. Andy McDonald MP is the and feel a loss of independence Treasurer and Teresa Pearce when they can no longer drive celebrating MP is the Secretary. due to uncontrolled seizures. Purple Day The APPG on Epilepsy hosts Previous APPGs on Epilepsy a number of meetings and events have included: Purple Day 2019, in parliament throughout the year. held on 26 March when the These are usually held in one of the group engaged with MPs, Committee Rooms in the House of raising awareness of epilepsy, Commons. Members of the group encouraging them to tweet can submit responses to inquiries and share ‘purple’ photos of or consultations held by the themselves, and tabling a series Government. of parliamentary questions around epilepsy. An earlier meeting Recent APPGE activity looked at epilepsy and people’s The most recent APPG pn Epilepsy experiences of Personal Paula Sherriff, MP, talks abour her dad’s epilepsy focused on how to reduce Independence Payments (PIP). epilepsy-related deaths. The group The details and topic of the and what she hopes to achieve as chair of the APPGE discussed key findings from the next meeting have not yet been Public Health England Neurology released. We will keep you updated “I wanted to become involved with He has tonic-clonic seizures, but Mortality Report. This followed on with more information on the All Party Parliamentary Group on around 10 years ago, he started from the key recommendations upcoming APPGs on Epilepsy Epilepsy as I have a strong family link going into status epilepticus. He made at the Prevent 21 Summit on at epilepsysociety.org.uk APPGs are your with my dad having quite unstable almost always now goes into status Tackling Epilepsy Deaths hosted by chance to engage epilepsy. and sometimes it involves a hospital SUDEP Action in Oxford last year. “Speaking to constituents whose stay. Sometimes he is put into with democracy children have epilepsy, I realised there’s a medical coma. Key findings showed a three much more that we need to do to both “I’ve seen my dad evolve in his per cent increase in the number raise awareness, and to get people own acceptance of the condition. The of people living and dying with talking about the condition more and to biggest thing for him was having to epilepsy each year; deprivation understand how it can affect people’s give up his driving licence. He felt it makes an individual more likely to lives. Epilepsy is still quite taboo and emasculated him as he was always the driver. He used to be in denial and develop epilepsy; seizure control I think encouraging people to know what to do if somebody has a seizure said to people ‘I have fits, but I’m not varies with deprivation; and high is so important. epileptic’. On the brain scans, it didn’t prevalence plus poor seizure “My dad developed epilepsy in his show that he had any scars.” control results in more deaths. mid-40s. He was a police officer and “My dad has had mixed Suggested solutions include: was at Manchester Crown Court giving experiences with neurologists. My having an epilepsy lead in each evidence. My mum got a phone call mum said that she wasn’t happy with Make sure your saying ‘ your husband’s fallen ill’. At his neurologist. Dad is in his 70s and Clinical Commissioning Group or voice is heard the time, Dad was in quite good health, is a fit man, but Mum felt that the hospital; increasing the number we didn’t know what was going on. doctor wasn’t treating him the same as of epilepsy services; and tackling “My dad once had a seizure in the other patients and didn’t feel it was fair. the causes of deprivation. street when my mum and I were away As I used to work in the NHS, The APPG on Epilepsy agreed: The APPGE is in Paris on holiday. Bystanders cut off I encouraged my mum to get a second • all of his clothes as they thought he’d opinion for Dad as there’s nothing to write a letter to the Health a cross-party had a heart attack as he was lying wrong with asking for one. They saw Select Committee asking for an group of MPs unconscious in the street. I think a lot a different neurologist who changed inquiry into epilepsy-related deaths of people walked past him because my dad’s medication and added a • to seek a meeting with the The group includes MPs, they thought he could be drunk. new drug. He didn’t have a seizure Secretary of State for Health and from the top: Cheryl Gillan, “Because Dad began having for nine months. Social Care, Matt Hancock, to Teresa Pearce, seizures out of the blue, the doctors “Dad started having seizures thought it was a brain tumour, so he again on Christmas Day, but highlight Summit recommendations Paula Sherriff (chair) and Valerie Vaz. had to undergo a lot of tests. His first fortunately, he didn’t go into status. • for epilepsy-related deaths to seizure was a big one and all of his He’s been ok since, so we’ve got our become a standing agenda item seizures have always been significant. fingers crossed”. on the APPG on Epilepsy. Members of the public who attended asked for more to be done to address the stigma around You can contact the APPGE at [email protected] epilepsy, particularly around young

12 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 13 FUNDRAISING LEGACY Fundraising in my DNA Painting

Our trustee Andrew of the scope of a ruler, pencil and graph paper! The Epilepsy Society is tomorrow George explains why currently working on he walked 100km getting data from 5,000 to raise money people with epilepsy. When the first human Neill Lowdon is an and ask her about epilepsy. She that will help us to genome was sequenced had epilepsy and was bitter about it cost US$5 billion and artist from Cornwall her condition. Watching these two analyse genetic data took many years. Now, examples inspired me to sell my who has recently sold paintings and donate the proceeds and increase our scientists can sequence a person’s DNA in 48 35 of his paintings to Epilepsy Society. understanding hours, and it costs just I’ve been painting since I a thousand pounds. to raise money for us. attended Falmouth School of Art of epilepsy This gives scientists 40 years ago. I’ve also cycled over and doctors access to Here, he talks about 100,000 miles to get to places information about why one where I like to paint. I largely paint person gets epilepsy and leaving a legacy in his landscapes, but I can paint a bit of n May I did something that felt another does not. It also will to Epilepsy Society everything, including still life and I think it’s important to leave close to impossible. I walked allows them to discover portraits. I mainly paint Cornish a legacy, particularly to epilepsy 100 km non-stop from London new causes of epilepsy. landscapes near where I live with charities such as the Epilepsy ’ve had epilepsy since I was to Brighton. This makes a difference. pastels, oils and watercolours. Society so it can continue its IWhy did I do this? I wanted to born, as my brain was damaged Research carried out by An exhibition was held in March research into determining the during birth. It’s had a big raise money for a research project the Society at its centre in in my local town. A lot of people causes and treatments of epilepsy. impact on my life. I have tried that will contribute to the work of Chalfont St Peter, together who came were grandparents, I recommend others to leave Idifferent medications for many the Epilepsy Society in treating or with partners in University desperate to help their grandchildren a legacy in their wills to give years and I have taken around preventing epilepsy. We are looking College London, showed each person’s genome. who had epilepsy.Thirty-five of something back to a cause they 106,000 tablets to try and help deal to fund a bioinformatician to that for one young man his So I walked 100 km to try and my paintings were sold raising care about, as you can never quite with my epilepsy. Unfortunately, analyse the genetic data that epilepsy was caused by a single raise money to support the work of £1,500 for Epilepsy Society. tell where life is going to go. the medication hasn’t really scientists are producing. gene mutation. This predicted a bioinformatician for a month. My Now I’ve decided to leave a I would like to do another worked and my consultant thinks When I started my scientific that a drug, normally used for target is £5000, about 5p for every legacy to Epilepsy Society in my exhibition of my paintings in a I have drug-resistant epilepsy. career in the 1980s there was no heart disease and not for epilepsy, step that I took. And I’m not far off. will, as I want to give something few years to donate more money I had a Vagus Nerve Stimulator such thing as a bioinformatician. might be effective for him. As well as raising money for back. It wasn’t until I had my to Epilepsy Society, as there is fitted that destroyed my voice for If I worked really hard I could The bottle neck in this research the Epilepsy Society I was also exhibition that it dawned on me room for more success. several months. I was desperately produce five or 10 items of data is analysing the data. The only doing this for myself. I am not the how much fundraising mattered trying to communicate and it was and analyse them with the help of way to do this is to use new most physically active person, and to people with epilepsy. I also If you are considering leaving very frustrating. a ruler, graph paper and pencil. As mathematical approaches to it was good to do something that didn’t realise that so many people a legacy to Epilepsy Society, we I have seen two examples of science got more powerful I would analysing the data, and this is was a real challenge for me. had epilepsy. always recommend you take legal epilepsy and what it can do to you produce maybe 100 items of data, why you need a bioinformatician Thank you to everyone who has I have asked for my donation advice. You can find information on my local news. One girl died of to be analysed using a computer – a person who has the expertise supported me, and it’s still not too to be put towards their ground- at epilepsysociety.org.uk/legacy epilepsy at school when she had and spreadsheets. to use these new methods to late to donate at the link below. breaking research. I would also like or call us on 01494 601300 for a seizure. This bothered me a lot The genetic data we are getting interpret the information from Thank you. to donate my brain at the end of a confidential discussion. and made me emotional. now is on a totally different scale. my life to Epilepsy Society’s Brain With your help, we can make Another time, I saw a reporter The human genome contains over and Tissue Bank, so it can be a real and lasting contribution to justgiving.com/fundraising/andrew-george19 approach someone on the street 3 billion base pairs. That is well out used for vital research the lives of people with epilepsy.

14 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 15 FAMILY pilepsy affects 600,000 There are four million tube people in the UK and 50 “Calm, Cushion, Call.” journeys made across London million worldwide. Yet every day, so we know that this research carried out by • Stay CALM and offered a great opportunity to raise Eepilepsy charities* showed that stay with the person awareness of how to support two out of every three people in someone during a seizure. the UK who do not have a family who is having We were also very aware that member with epilepsy, would not a seizure. five seconds is a very short time know how to help someone during frame in which to capture a seizure. • CUSHION their commuters’ attention. This is why And many people who have a head with a coat we have gone for very simple and friend or relative with epilepsy say visual messaging. We created they would not feel confident of or cardigan to three friendly animated Cs which supporting them in a seizure. stop them injuring we hope will deliver an important Calm That is why this year epilepsy first aid message in a fun way. charities in the UK came together themselves. The “Calm, Cushion, Call” to make seizure first aid their main • CALL for help if the campaign was also rolled out focus for National Epilepsy Week across social media platforms (20-26 May 2019). And at Epilepsy seizure does not stop. including Facebook, Twitter and Society, we launched a new Instagram reaching over 700,000 campaign to give people the basic campaign gives people three people on these platforms. tools of seizure first aid that could simple instructions to remember in We would be very grateful if help save a life. an emergency – Calm, Cushion, Call. you could also help us share the “It’s not that people are unwilling Most seizures will stop of their campaign via social media but to help,” says the charity’s chief own accord within a couple of there are other ways that you can executive Clare Pelham. “I think minutes. The person will need to join the campaign too. You could more often than not people are only be looked after until a friend or download or order our free Calm, Cushion too willing to do the right thing. It’s family member is called, but they Cushion, Call poster and display just that they don’t know how to.” may not need an ambulance. it in a prominent place such as a There are many different However, the “Calm, Cushion, Call” school, workplace, surgery or library, seizure types and initially our campaign is specifically designed as long as you have permission. campaign is focusing on tonic to help people cope in an emergency. More than 700 posters have clonic seizures as these are the Epilepsy Society’s Chief already been sent out. most easily recognised seizures. Executive Clare Pelham said: Or you could share the However, we also have details on “We are very aware that if you campaign with colleagues at work our website about how to support encounter someone having a by asking your employer to include someone during other seizure seizure out in public, you won’t our infographics in their internal types. And our aim is to extend know their medical history, or newsletter. We hear from many the campaign to other seizure indeed if it is an epileptic seizure. people who say that they do not types making sure everyone “It is a natural instinct to try to feel supported with their epilepsy is #seizuresavvy. do the very best that you can for in the workplace, and this is a Seeing someone having a that person and call for medical good opportunity to raise Call convulsive seizure where they help. We hope that the three “Cs” awareness. You can request all the fall to the ground shaking, can be – Calm, Cushion, Call – will stick materials at seizuresavvy.org.uk disconcerting. So the charity’s new in people’s minds and be easy More detailed first aid relating to recall should the need arise.” to convulsive (tonic clonic) The charity has initially rolled seizures and other types of We hope that out the campaign with a series of seizures can be found at high impact digital posters across epilepsysociety.org.uk/first- Epilepsy Society launches its new three ‘Cs’ the three ‘C’s London’s Underground stations. aid-epileptic-seizures These were displayed at Euston, campaign to raise awareness of seizure first aid – Calm, Cushion, Kings Cross, Oxford Circus, and make sure that everyone is #seizuresavvy. Call – will stick Victoria, Waterloo, Baker Street *These were the findings of a in people’s minds and Westminster stations. YouGov poll of more than 2,000 Nicola Swanborough writes Digital posters are displayed UK residents, carried out during and be easy to on a 30 second loop, with our National Epilepsy Week 2017. Calm, Cushion, Call posters The poll was commissioned recall should the displayed for five seconds in by Epilepsy Society and need arise every 30 second loop. Young Epilepsy.

16 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 17 MEDICAL a biomarker that could explain Anna’s story why I have epilepsy when no-one else in my family does,” continues Anna. “The next step is to test my parents’ DNA to see if either of them has the same biomarker. Neither of them has epilepsy so Our genomics clinic: if they have the biomarker, maybe it’s not the cause. But if neither of them has it then it could explain helping to change lives my seizures. “I am just really excited that this could open up new avenues of treatment for me that the doctors are confident should work Epilepsy Society’s innovative genomics clinic is helping to direct according to my genetic code. I feel a real sense of hope which treatment options for epilepsy by unlocking the secrets of our DNA. Anna Coe has undergone 27 years of different I haven’t felt in a long time. I have Nicola Swanborough looks at how it is already bringing hope medications and brain surgery to try to control her been going down dead ends with epilepsy. She has often felt that the trial and error medications for so many years now, but suddenly, here is this enomics is a very new The clinic also provides the to the wealth of valuable genetic of medication changes has led her down dead ends key piece of extra information field of medicine but it opportunity to counsel patients information that is embedded and left her feeling exhausted. But now she feels that could make a difference. is already helping us and their families where there in an individual’s DNA. that a diagnosis through sequencing her DNA “It feels like such a step to understand the causes may be a chance of other family Research in this field has is offering her real hope of better, more focussed forward in medicine and it gives Gof seizures in some people with members being affected or of already increased our treatments that could work for her me confidence that for future difficult-to-treat epilepsy where children having similar difficulties. understanding of some of the generations, any child who is we think there may be a genetic And it ties in closely with the genes that can cause epilepsy diagnosed with epilepsy will not basis to their condition. ongoing research we are doing and determine response Anna Coe is 36. She was first conscious, she was unaware of have to go through the endless A genetic diagnosis may help into the epilepsies. to some treatments. diagnosed with epilepsy at the where she was or what she was trials of medications and us to establish why a person People with changes in these age of nine and although she has doing – “I often locked myself treatments that I have been has recurring seizures and Taking part in our genes are more likely to develop never let the condition get in the out of the house”, she says. through, in the hopes of finding can sometimes help to direct research study epilepsy or have a different way of her education or Since her surgery, her seizures the right one. treatment options. response to their treatment. By now happen in her sleep and while Genomics promises to give us employment – she works for a “Just to have that genetic At Epilepsy Society we are looking at a large population, we they don’t have the same impact a wealth of information about homeless charity in Surrey and blueprint and be able to say, that running an innovative epilepsy hope to identify the incidence of as her previous day time seizures, each different type of epilepsy was previously a journalist – she drug might work for you, is such genomics clinic. The new clinic these gene changes in the UK there have been times when she and a person’s individual response describes her life as a constant a major step forward.” at our Chalfont Centre in and improve our understanding has had three or four seizures to different medications. But our battle to get her seizures under Buckinghamshire, enables us to of epilepsy. in a night, leaving her worn out. knowledge is still limited. That is control. see and diagnose people who are Participants involved in our Alongside this she has found Billy and Danny’s story why our research is so important “I have had 27 years of trial thought to have an underlying research may be offered a range the constant changing from one Brothers, Billy and Danny in helping to enhance our and error with so many different genetic cause for their epilepsy. of tests including genetic tests, medication to another exhausting Knight both had uncontrolled understanding of the genetic medications, or combinations of We are the first specialist centre neuroimaging (magnetic with little hope of gaining full seizures. Billy was having up architecture of epilepsy. medications,” she says. “In 2011 in the country to be running this resonance imaging, control of her seizures. to 1,000 seizures a day and At the moment we can only I underwent surgery to remove the type of clinic for epilepsy. electroencephalography and But now Anna is hopeful that neither of the young men recruit people for our research who part of my brain that was causing Adults with difficult-to-treat electrocardiography), transcranial her neurologist may have found responded to epilepsy are under the care of UCLH. But my seizures. That worked for two epilepsy can be referred to the magnetic stimulation, optical the cause of her epilepsy and that medication. Then genetic you can find out how you can be and a half years, but then my clinic by a consultant or coherence tomography and 3D this could open up new treatment testing helped to diagnose considered for future research at seizures returned.” neurologist from anywhere in the stereo photogrammetry. It will options for her. a creatinine deficiency in the epilepsysociety.org.uk/recruiting- Initially Anna experienced UK (epilepsysociety.org.uk/getting- vary according to each person’s Anna has had her DNA brothers. Billy and Danny now people-our-research complex partial seizures which referral). Our doctors investigate epilepsy which tests they sequenced as part of the 100k take a creatine supplement The aim of our research is meant that though she was each individual’s genetic pre- will be offered. Genomes Project and her four times a day and are both to investigate the genetic pre- disposition to epilepsy and try You can find out more about neurologist, Sanjay Sisodiya, seizure free. Their dad, Richard disposition to epilepsy and its to shape individuals’ treatments. these tests on our research hub at Professor of Neurology at UCL Knight said: “If we were 25 treatment. Our researchers extract I feel a real For some people genetic epilepsysociety.org.uk/genomic- Queen Square Institute of years further on, they would DNA from the blood or saliva of diagnosis can lead to a change in research-breakthroughs. sense of Neurology and Director of have led a pretty normal life.” those people who have given us medication, diet or supplements, You can also watch our video Genomics at Epilepsy Society, Watch Richard talk about consent to use their samples for change which although often we do not as Dr Wendy Jones discusses is hopeful they may be able to his sons’ journey at research purposes. Sequencing necessarily have the required her innovative work at the I haven’t felt in pinpoint the cause of her epilepsy. epilepsysociety.org.uk/ their genomes provides us access knowledge to redirect treatment. genomics clinic. a long time.” “He thinks they may have found genomics-case-studies

18 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 19 WAYS AND MEANS PROBLEM SHARED

for the charity. (Please contact your HR department to find out Next issue more about payroll giving to I have an issue with workplaces Epilepsy Society.) not training staff about epilepsy, • by taking advantage of our despite having a staff member with in-house epilepsy awareness epilepsy. Apparently, as it’s not a training for companies. service user who has it, they can’t epilepsysociety.org.uk/training- “My 22-year-old son has had uncontrolled seizures warrant the training, which I found courses-epilepsy. Epilepsy in for eight years. He has tried 12 medications and quite irritating! Also, I’ve found a lack of awareness in workplaces the ketogenic diet. He is not suitable for surgery surrounding the memory aspect of and our consultant will not consider medicinal epilepsy as it can and does affect the workplace day-to-day living. How do I make cannabis because the trials have only been done sure that workplaces warrant the Asking your employers and colleagues to on children. Has anyone else gone through the necessary training and awareness same experience and how did they overcome it?” surrounding epilepsy? support Epilepsy Society at work can help ANNA MARIA, LEEDS to increase understanding of the condition Young’s Hotels DARREN, MANCHESTER Would you like to share your Nikki McCarthy, manager thoughts with Anna Maria? and raise funds to help change lives through writes: “Young’s very much Email nicola.swanborough@ care about their staff. So when epilepsysociety.org.uk, write our pioneering research. Communications it came to choosing a charity to Editor, Epilepsy Review, officer, Rhia Arden explains to support, it asked its general Epilepsy Society, Chalfont St Peter, managers to suggest one that Bucks, SL9 0RJ, or reply at: had real meaning to them. facebook.com/epilepsysociety ave you ever thought And Sainbury’s Argos turned their Epilepsy Society gained the about raising awareness headquarters in Milton Keynes purple most votes when staff learned Your replies of epilepsy in your for Purple Day on 26 March, led that some of their colleagues, workplace and at the by staff member Jey Sharman, including me, have this Hsame time raising vital funds for part-time carer for her brother, condition. Young’s have been These substances can help 14. Your life is different with seizures, seizures, which occur typically Epilepsy Society? We are often Nathan who has severe epilepsy. amazing in supporting me to but need careful consideration of sometimes it’s harder – where about 90 to 120 times per month. inspired by the number of people You can read more about their work without fear of prejudice which type and strength. Ask for day-to-day tasks become near It’s had a devastating impact who hold fantastic fundraising stories below. or unfair treatment.” a second medical opinion from impossible because you can’t on him, but we do what we can events at work, helping to support We would love to hear from you an epilepsy neurologist specialist. remember where you are. to help him enjoy life as much as Epilepsy Society and raise awareness if you think your employers and Campaign through your MP and Find something you love to do possible. His time in hydro pools of what it is like to live with seizures. colleagues could support us by local Clinical Commissioning and surround yourself with people is his great joy. His ability to smile But we also know that many becoming partners of Epilepsy Group for them to get the funding who care about you, and your despite the burden of his seizures people find there is little Society. We work with a range of for trials to include your son’s type seizures will become background. is extraordinary. I hope Darren has understanding of epilepsy at work companies, both large and small, of epilepsy and for him to be Drug trials are ongoing all the better fortune for his son. and they worry about what will and we can adapt to all levels of included in them. Meanwhile take time, and better medications will David, facebook.com/epilepsysociety happen if they have a seizure. engagement. heart because there are many folk come out, just try to remain positive. We have been working with There are several ways that Sainbury’s Argos out there with the same dilemma. Don’t be afraid to seek the advice Keep trying! Never give up! several organisations to help employers can get involved as Jey Sharman’s brother has Lyn facebook.com/epilepsysociety of the epilepsy specialists – I have Finally after over 25 years of trying, educate employers and staff about corporate partners: severe epilepsy so she knows found the Epilepsy Society helpline I’ve found a combination of meds the condition and also to have • through sponsorship of one of about the impact of seizures. Yes, I had the same problem wonderful when I’ve needed advice. that work well enough. fun raising money for the charity. our high profile events. This will Jey is a member of the and I pushed for having a VNS Alice, facebook.com/epilepsysociety Melissa, facebook.com/ We have been really pleased to help promote your company’s Disability, Carers and Age (vagus nerve stimulator) implant. epilepsysociety have the support of Young’s Hotels charitable support while raising network and arranged for It was the best decision ever. The VNS has been a life saver, who have a collection of pubs funds for Epilepsy Society Sainbury’s Argos to turn their I went from having 10 or more although the seizures have not Get a second opinion, I always across the UK, and Sainbury’s • by making Epilepsy Society your Head Office in Milton Keynes seizures a day to four a week. stopped completely. do my research until I get answers. Argos, one of the UK’s leading charity of the year. We can work purple for Purple Day. There Hannah, facebook.com/ Sandy, facebook.com/ Sandra, facebook.com/ digital retailers. with you to develop individual were activities to help staff epilepsysociety epilepsysociety epilepsysociety Young’s Hotels named us as packages including community learn more about epilepsy. their charity of the year, inspired engagement and PR opportunities The network is promoting our I can actually relate to this We’ve tried all known The views here are those of the by one of their managers, Nikki • by getting involved in one of #seizuresavvy campaign via problem a lot, as someone who also medications, medical devices and authors and not necessarily those McCarthy, who has epilepsy. Staff our volunteering opportunities their internal platforms. has uncontrolled seizures and has diets for my soon-to-be 20-year-old of Epilepsy Society. You can read have raised over £6,200 for us • through payroll giving which tried all suitable medications. I’m 24 son. Sadly none have had a more replies to Darren's letter at through bike rides and pub games. helps to ensure a steady income and have had seizures since I was significant beneficial impact on his facebook.com/epilepsysociety

20 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 21 AND FINALLY NEWS Society matters Tonic comic

Stand-up comic and all-round funny girl but being stuck there is awful, and Conversation starter Conference time Running for victory: Juliet Stephens has the last laugh when a likely sign of depression, which is sadly, closely linked with epilepsy. Purple Day this year was our We’re busy getting ready for our Well done and thank you to it comes to her epilepsy In my work as a dramatherapist, biggest and loudest ever! Over 800 Annual Conference 2019 and very everyone who took part in the I encounter anxiety a lot; with young people ordered a fundraising pack much hope that you will be able to London Marathon, raising more people and with adults, with people t the time of writing and together we raised more than join us. The conference takes place than £80,000 for us. Our 32 runners at work/school/ college? who have a medical condition and the UK is racked with £85,000. Thank you to everyone on 14 September 2019 9.30am-5pm were amazing and so were the (Fun fact: I did miss my best those who don’t. The important seemingly endless who baked cakes, face painted, at the Holiday Inn, London WC1N 1HT. families and friends who lined friend’s wedding when I had a message is that help is available. uncertainty about the walked, ran, danced and arranged Our theme this year will be the route to support them. seizure in the taxi on the way to the You may want to speak to a GP, Afuture of our country and its registry office. Luckily, she had a many other fundraising events for us. ‘empowerment’ and we will be After the race, the runners joined a counsellor, a cognitive behavioural relationship with the EU. Whatever Our theme was ‘be the covering a range of topics our fundraising team for a post- wedding party a month later so I therapist or an epilepsy nurse. I first our opinions on the matter, the conversation starter’ encouraging including: medicine shortages; race reception and sports massage was able to celebrate with her then.) spoke to an epilepsy nurse about uncertainty is exhausting. Politics people to talk about epilepsy and anxiety and depression; the benefits at Westminster Hall. We all worry from time to time; 12 years after my initial diagnosis is about day to day life, not just raise awareness of the condition. system and looking after your own If you would like to take part like any other emotion on the and it was a game changer! abstract ideas of sovereignty, so One of our Trustees, Chris Blue, well being. Attendance fee is £25, in the London Marathon 2020, weathermap of our human Also don’t forget about the the uncertainty carries into our even changed his name to Chris including refreshments and lunch. go to epilepsysociety.org.uk/ experience, feelings come along, thousands of people out there everyday personal lives and can Purple for the day and spent the Priority booking will open to virgin-money-london-marathon. and then they tend to pass by when who also have epilepsy, who have cause a lot of worry. For people day out talking to people to explain members soon so look out for You can also find out about other shared insight into what it’s like with epilepsy this may include why. (Watch his video, see page 5.) details at epilepsysociety.org.uk running events for Epilepsy Society. to live with feelings of anxiety. worry about whether medications There are support groups, coffee will be available, what would You might also mornings across the UK and online hospital treatment options be if I We had a number of hosts, forums to share experiences, and Me and My Shadow: needed assistance when overseas, recognise that from companies and organisations get support from people who really For the second year running we will my EU neurologist leave the including our biopharmaceutical living with epilepsy do understand what it’s like. You launched our Me and My Shadow UK, and if so will there be enough partner UCB, to the NHS Middlesex might also recognise that actually, scheme on International Women’s qualified medical professionals and the uncertainty Trust and the Saracens Multi- living with epilepsy and the Day, 8 March. The scheme aims to take their place? Academy Trust. this brings, has uncertainty that this brings, has to build confidence and ambition As you are reading this, maybe Ankita, 23, who took part in in fact made you more resilient in women with epilepsy and everything has been magically in fact made you the scheme said it offered an than you realised. You face the encourage them to think big. resolved, maybe a decision was opportunity to ensure epilepsy does more resilient than uncertainty… and you continue This year, we extended the age finally made, a deal voted for, not limit her ability to attain her goals. to survive. It’s not always easy range to 18-30, giving more women epilepsy meds and professionals you realised You can read about some but your success rate at survival the chance to shadow women are in plentiful supply, there’s extra of the shadows’ experiences at is 100% so far. Winner! in a range of different careers. funding for epilepsy research and epilepsysociety.org.uk/shadow These may be uncertain support services. Though it’s a different emotion blows in. If they times, but let’s be clear for a possible we could still be treading don’t, and the feeling gets stuck moment – all times are uncertain. water in the Great Uncertain Sea and you can’t seem to shift it, and Life on the edge Epilepsy Whatever is happening in your for months to come. *gulp* it’s really affecting your day-to-day life right now, it will eventually pass. Would you like to join Team on display Having epilepsy teaches us a lot life, this can be an indication of Purple and abseil down If you’re having a terrible day, just A big thanks to our friends about living with uncertainty. We a mental health problem and Broadgate Tower in London sit tight, a better day is coming. at Queen’s Square library have to manage this day by day – something which you can seek on 31 August. The tower And if you’re having a Mardi Gras in London who have been and the anxiety which all so often advice and support for. Some is one of London’s tallest kind of a day, it won’t always be holding an exhibition about comes with it. Having epilepsy people develop an anxiety disorder buildings, measuring 540ft. like this, so savour every moment. the history of Epilepsy introduces daily ‘what ifs’ to our because of their anxiety about All you need is courage Society. Running until June lives. What if I have a seizure today? epilepsy, or sometimes it can be to step over the edge. 2019, you can find out more Who might be around me who I can a side effect of medication. In the Find out more at at queensquare.org.uk/ trust? What would be the fallout of same way feeling in a low mood, Juliet Stephens epilepsysociety.org.uk/ archives/visiting/exhibitions having a seizure today, when I am: or feeling down is perfectly normal, Laughing allowed broadgate-tower-abseil.

22 Epilepsy Review issue 22, 2019 Epilepsy Review issue 22, 2019 23 Helpline 01494 601 400 Monday and Tuesday 9am to 4pm, Wednesday 9am to 7.30pm. Confidential, national call rate. Information and emotional support.

Epilepsy Society Chesham Lane Chalfont St Peter Buckinghamshire SL9 0RJ Enquiries 01494 601 300 Epilepsy Society Fundraising 01494 601 414 Annual Conference 14 September 2019 Holiday Inn, Bloomsbury, London, WC1N 1HT epilepsysociety.org.uk 9.30am – 5pm /epilepsysociety The theme of this year’s conference is ‘Empowerment’

Talks will include medicine shortages; managing anxiety and depression; navigating the benefits system and tips on looking after your own well-being.