Epilepsy Action

We want to show people how easy it can be to meet your MP and ask for change. If you’ve taken part in campaigning before, you can help. Find out more and submit your video using our tips below at epilepsy.org.uk/MPvideo
We are asking people to send us a short video of themselves. We want to hear about how you organised a meeting with your MP, what it felt like, and why you would encourage someone else to do it.
We will be putting some of your clips together to make them into a longer film. We hope to use this to help us in our on going campaign on the PIP process and it’s unfair treatment of people with epilepsy. Together, we can make a change.

If you could use emojis to describe/give your feelings on epilepsy, what would they be? 🤔 #WorldEmojiDay

Team GB sprinter Beth Dobbin just smashed a 34 year record and was crowned British champion. When she was 13, Beth had a seizure so severe she was unable to talk or recognise her father. Beth talks to BBC Sport about her epilepsy in the video below. Thank you for being such an inspiration and sharing your story 💜
"Epilepsy, there’s a stigma around it, not many people speak about it. Just don’t let it define you. Don’t let it stop you, whether that’s exams at school, musical instruments, sports, anything.
Everyone is different and just be patient with it, you might not see the recovery you want straight away. Speak to your friends and family. Make sure your mental health is ok and just keep going."

Sioned’s life became difficult when her son Elis was diagnosed with epilepsy at a young age. She was close to a break down, not sleeping and not allowing her son out of her sight. With the help of a new epilepsy specialist nurse Eleri Gwyn (Ysbyty Gwynedd Hospital), she learnt to cope with and manage the condition.
Eleri encouraged Sioned to seek support from other parents going through similar difficulties. Following Eleri's advice, she attended an Epilepsy Action Caernarfon... Consultation last January. Sioned said she cried all through the event, seeing the light at the end of a very dark tunnel and feeling a sense of relief to see many other people there going through the same thing.
Sioned now attends a group for parents whose children have epilepsy. She can talk openly about how she feels with other members of the group who share her emotions and feelings of being alone. Now the group feels they are coping better, feeling a problem shared is a problem halved.
Sioned’s confidence has grown so much that she is looking to set up a new group in Llangefni. This is a big step for her and we wish her every success!
Thank you to Eleri for giving Sioned vital support when she needed it the most 💜
You can listen to Sioned’s interview on BBC Radio Wales below.
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On the 70th birthday of the NHS, we're celebrating the story of Paul and Nel. The dedication of Paul, the Epilepsy Action Harrogate branch and a team of paediatric nurses has paved the way for a new paediatric epilepsy specialist nurse to be appointed at Harrogate District Hospital. Gemma Jeffery will take up the post in September and is the first nurse of this kind to work in the district.
The new specialist nurse role has been created as part of the hospital’s Paediatric Ou...tpatients Department business case. It was also part-funded by Epilepsy Action’s Harrogate branch, a local support group run by Paul Sinclair and David Barber.
Paul was compelled to co-run the group when his daughter Nel, now ten, was diagnosed with epilepsy as a toddler. “Back then we didn’t know much about epilepsy at all. There was a distinct lack of epilepsy specialist nurses in the area, so we went to York. Generally, it’s difficult to see a paediatric consultant; they are always so pushed for time. A nurse at Harrogate District Hospital would have bridged that gap and provided much-needed, hands-on care.”
Specialist nurses are also a vital source of support to teachers when school-age children are living with uncontrolled seizures. “Nel barely remembers her time in Year 2, as she missed so much school. Epilepsy nurses are a rare and vital support to teachers, helping to implement care plans and training staff in first aid. They also give practical advice on things like PE, residential trips and everyday learning. This support can help more children like Nel stay in school once they recover from a seizure and keep up with everyone else."
Paul, along with branch treasurer David Barber, always knew that his mission was to secure an epilepsy specialist nurse for Harrogate District Hospital. “We were determined to fundraise for this,” says Paul, whose gruelling challenges include the Alpe d’Huez triathlon and the Marathon du Sables - running 250km across the Sahara Desert last year. “My wife Lou did the Leeds half marathon too,” Paul adds. “We’ve also had great support from the Harrogate Round Table, who helped us to raise another £2000.”
David, who reformed the branch and has been treasurer for 15 years, campaigned with Paul to raise the money. “It’s utterly fantastic that we’ve achieved this,” he says. “A nurse will support many local children and their families coping with this complex condition.”
The Epilepsy Action Harrogate branch meets every third Saturday of the month at St Peter’s Church. David says, “There’s a range of ages, regulars and newcomers. Most people just want to talk to others who are going through the same thing. It’s a safe, supportive space and can be really rewarding for families, especially in the early days of diagnosis.”
Thank you Paul and Nel for sharing your story 💜
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Special thanks to all the Epilepsy Specialist Nurses, Neurologists, Epileptologists and all our NHS staff this #NHSBirthday #NHS70 💜 🎉 Celebrate with us and share some of your positive NHS stories today 👇👇

60% of people with epilepsy who apply for PIP have their award disallowed or reduced. This is 20% higher than any other condition. After signing up for the PIP pledge, Emma Hardy MP asked the disabilities minister why this was. In her answer, she didn’t even mention epilepsy… Find out how you can get involved and help make a change – epilepsy.org.uk/pipcampaign

"I was diagnosed with Epilepsy in 2006, at the age of 10 years old during my last year of primary school, looking forward to my high school years. From then on all it has done has spoiled my future. Being an A* student, told I was incredibly good at English in primary school, little did I achieve in high school.
I remember my first seizure and all the little auras I would get at such a young age; having to tell my mum and dad about them and having no idea what was wrong. Then..., going to the doctors being diagnosed. It was incredibly traumatising.
Ever since then, I have been unable to be covered by any medication 100%, trying nearly every medication in existence and have had multiple MRI's, EEG, and CT scans. Currently on zonisamide and perampanel.
After high school in 2011, trying college 3+ times with uncontrolled epilepsy was awful. With low attendance each time, missing too many lessons and too anxious to focus, I had little success in college. Not only in college, but university, unable to drive, and various other goals I can't achieve, all because this condition is heart breaking - especially uncontrolled. A life long condition is always hard for me to accept.
I always have to avoid the vicious circle of triggers such as stress, lack of sleep, hormones (difficult for a young lady) as much as I can. My medication comes with side effects that many people aren't aware of - nausea, anger, mood swings etc. Having a brain condition doesn't just affect your physical being, but also your mental health. Although I have the more than amazing family and friends who understand this so much, it is hard to explain how the side effects worry me as much as the seizures do.
It's incredibly horrifying not knowing when you might have a seizure, waking up afterwards and being told you've injured yourself. Ofcourse, the feelings of stress and frustration after. The afterwards feeling is just as bad.
However, I make sure my condition does not define who I am AT ALL. It does after all show me the strength and courage I have; the fact I have a job, travel the world, do modelling, and have a fiancé who is the most understanding person I have met. And finally am studying an adult college course, only to get me to university. The fact Is... if I can recover from an ordeal such as a seizure, I can live with this condition for now 10+ years, and the effects that come with it!"
Thank you Chloe for sharing your story with us 💜
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Can anyone relate to this cat right now? Remember, heat can lead to an increase in seizures for some people. NHS choices has some great information on how to cope in hot weather - https://www.nhs.uk/…/…/heatwave-how-t o-cope-in-hot-weather/…

A lot has happened this week around cannabis-based treatments. The government made two big announcements. We promised that we would follow this issue closely and we have been doing just that.
Over the weekend Billy Caldwell and his family were granted a temporary licence to access his cannabis oil treatment by the Home Secretary. Since then everything has moved very fast.
A temporary licence has also been issued for Alfie Dingley to allow him to access cannabis oil treatment...
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"Back in 2010 I was unfortunately diagnosed with epilepsy totally out of the blue. This came after suffering a seizure at night and prior to that suffering from absences/petit mal seizures over several months. I wanted to share my story to show that if you have a dream, don't let Epilepsy get in the way of achieving it!
I have always been a massive electronic music lover since i was about 12 years old. I lived and breathed it, whether that was collecting music, DJing in my be...droom or going to gigs/clubs.
Immediately after the seizure I obviously lost my driving license, couldn't work and most importantly couldn't go to the music events that i loved going to. I was signed off work for 4 months to recuperate and undergo tests to find the root cause. I’ve always been a positive person so rather than mope around in the 4 months I needed a focus. I set myself the target of beginning to teach myself how to produce electronic music on my computer.
The Epilepsy was the catalyst for the start of an 8 year production learning curve which has now resulted in me being a successful artist, running a record label and djing out. My music is played out weekly by the worlds best artists and djs which is a dream come true!
Although things are good with living with Epilepsy I never take it for granted and ensure I live a healthy and balanced lifestyle.
Moral of the story..............Don't give up and don't let Epilepsy get in the way of stopping you achieve your dreams. Epilepsy was the catalyst to start mine!"
Thank you to Johnny Sacreé for sharing his epilepsy story 💜
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Epilepsy can affect our feelings – we may lose confidence, start to feel low or feel like we have become isolated. Anxiety is related to epilepsy in specific ways. Please read to find out more - https://www.epilepsy.org.uk/info/anxiety< br> As always you can call our helpline team free on 0808 800 5050, email helpline@epilepsy.org.uk or talk to us on social media if you ever need support. You are not alone 💜

Epilepsy Action chief executive Philip Lee spoke to Metro Online about Billy Caldwell's fight to get epilepsy treatment and the need for research into medicinal cannabis. Here is what he had to say.
"Mum Charlotte Caldwell has gone to great lengths – quite literally – to get life-saving treatment for her son Billy. Sadly, she is not alone in her race against time to secure medicinal cannabis her child, which could make the difference between life and death. Only recently ther...
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Personal Independence Payment (PIP) is failing people with epilepsy. As Volunteers' Week draws to a close we are asking you to get involved and demand change. Go to epilepsy.org.uk/pipcampaign to find out how you can help.
Hundreds of you have contacted your MP and asked them to take the Epilepsy Action PIP Pledge. So far, 36 MPs have committed to fighting for a fairer PIP process for people with epilepsy.
In November 2017 the government announced they were making changes to ...PIP guidance. This was after a judge ruled that a person’s need for supervision to remain safe was not being correctly assessed.
The government issued new guidance. Epilepsy Action believes the new guidance is still not good enough. The government also announced they will review existing claims following this change. They will be looking to see if anyone is entitled to more money under the new guidance.
Epilepsy Action believes the Department for Work and Pensions have made some mistakes when making these changes. We believe they should have worked with people with epilepsy when developing the new guidance. They should have taken more time to make sure they got it right. We don’t think they have provided enough information to people who might be impacted by the changes and the review.
Your support has helped us get this far. Epilepsy Action are taking part in the Disability Benefits Consortium’s (DBC) ‘PIP Summer of Action’. We need you to get involved. With over 80 charities taking part the voice of disabled people and people with long-term health conditions will be louder than ever. We want to make sure that the voices of people with epilepsy are amongst those being heard. Share your experiences with PIP and any contact you have with your MP using #GetAGripOnPip
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Ena Bingham is a retired epilepsy specialist nurse. She was the first Sapphire Nurse in Northern Ireland. Stacie Sheeran was diagnosed with epilepsy in 2007. Together they volunteer at the Belfast coffee and chat group.
Ena’s experience with Epilepsy Action had given her an insight into what volunteering for the charity would be like. “I had been involved with Epilepsy Action for over 20 years and I was aware of the valuable work volunteers are involved in.
“I started volunte...
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Ann lives in Leeds and volunteers at Epilepsy Action’s head office. She had worked for 9 years in Epilepsy Action’s membership team, which combined her experience in the NHS, as well as accounting.
“I always enjoyed working for the charity and knowing that what I did went to help those less fortunate than me. To be honest, I knew very little about epilepsy in the beginning. The biggest eye-opener was a video I watched in a training session. It really brought home to me the im...pact of epilepsy on children."
“I retired at 62, a little later than I planned, but there is a real community here at head office which made it hard to leave. I’d worked all my life, so when I left I promised to come back voluntarily at some point. Six days later I got the phone call and I’ve been back ever since."
“I come in one morning a week but I’ll stay longer if I need to, as I’m flexible. I really enjoy it and it fits nicely in my week. I like to keep busy and I hate saying no, as I get so much satisfaction from knowing that I’m helping others. Recently, I’ve been putting together new information kits for children with epilepsy called Just for Kids. They’re wonderful. I’ve just sent the first 300 packs out and Maxine on the team told me, ‘You’ve now just helped the first 300 children’, which is a lovely feeling."
“My volunteering in-house is a mixture of all sorts of things, from mailing out helpline materials, stuffing finisher bags for the Bradford 10k, to logging press coverage. I also get out to support fundraising events. One of these was a sponsored walk round Derwentwater in the Lake District. My husband and I both know the area and the terrain, so we offered to help people with walking difficulties to finish the course. The weather was not great and we were drenched by the end, but it was brilliant to be part of it!"
“I’d say to anyone thinking of volunteering to just do it. You’ll get so much back from it, especially if you understand what you’re volunteering for - you’ll feel a real sense of satisfaction.”
If you would like to become a volunteer like Ann, please take a look at our available roles - epilepsy.org.uk/volunteer
#volunteersweek #epilepsy #epilepsyawareness #volunteer
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Sue Wild is an Accredited Volunteer for Epilepsy Action in Northern Ireland. Sue had been a university lecturer in Manchester, teaching business strategy and marketing for service industries. Although she had no medical knowledge, Sue had some limited experience with epilepsy and thought that through volunteering she might have something to offer.
“I had prior experience of the impact of the epilepsy. I was close to a family who tragically lost a son through the condition at... the age of 32. I saw first-hand the impact that could have on a family."
“In addition, I had a student who occasionally had seizures in my lectures, usually on a Monday morning in a packed lecture of over 150 students. Her friends were more than able to deal with the situation and we all carried on as normal. It occurred to me that I knew very little of the illness and that she would not be the only person with epilespy in the faculty. Yet we as staff had no training or information.”
Sue began training to volunteer after she moved back to Northern Ireland, encouraged by her husband Jim, a consultant neurologist and epilepsy expert.
Having completed her volunteer course, Sue noticed that Jim was behaving strangely. “He was having small seizures, and struggling with his memory. By March 2014 he was in the Royal Victoria hospital and diagnosed with a very unusual form of encephalitis, resulting in seizures.
“I then took on the role of carer as he couldn’t drive for a year and there were a lot of hospital appointments. I never really got to use my volunteering skills until 2017. However I think I have a much better insight into epilepsy and the impact it can have."
“Jim has now retired and also works as a volunteer, so it fits in well with the rest of our lives.”
So far, Sue has given one epilepsy awareness training session for the South West Further Education College. Her second training session will take place at Queen’s University on 6 June.
“Higher education is an environment I am very familiar with, so I very much enjoyed giving my first presentation at a college. The feedback was very good, and it was great to speak to such a kind and interested audience. I am very excited about my next session at Queen’s University.”
As well as her epilepsy awareness training, Sue previously helped with an awareness stand at Queen’s University. Held at the university’s Freshers’ Fair, this event helped develop a relationship with the university. Sue is now working with the Disability Services at Queen’s University to launch a student-specific coffee and chat group. Plans are to launch the group in September 2018, which will meet in the Student’s Union, and Sue is likely to be the volunteer to facilitate the group.
Thank you to Sue for her Volunteers' Week story!
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Volunteering is not always about spending a day helping out in an office or at a charity fundraising event. It can also be about giving your time to speak out about an issue and make positive changes. Luke is from Lincoln and was diagnosed with epilepsy two and a half years ago. Earlier this year he shared a letter on Twitter after the Department of Work and Pensions wrote to give him 21 days’ of benefit sanctions for missing a 15-minute appointment. He was overwhelmed by the... messages of support he received and was soon approached by BBC Look North and the i newspaper to share his story more widely.
He said: “By this point, I realised I was far from the only person who had been treated in this way. I felt that, as well as appealing the decision, I needed to share my experience of the unfair sanctioning system under Universal Credit. It definitely helped to make a difference and they ended up overturning their decision with no need to appeal.”
“I had no idea my story would reach that level of media exposure, let alone how people would respond. Yet at the same time the support and positive comments I received from people on social media and various disability charities – especially the guys at Epilepsy Action – spurred me on.”
Luke’s passion and commitment to speaking out about epilepsy didn’t stop there, as he explains: “Even more excitingly, I was recently invited to give evidence in Parliament about my experience with benefit sanctions. By sharing my story, this led to me speaking out about it to the Work and Pensions Select Committee, hopefully helping to stop others going through the same appalling experience.”
Luke urges anyone who’s considering volunteering their time by speaking out to give it a go. “Challenging misconceptions and helping people to better understand epilepsy is something I’m very passionate about. This is because I really didn’t understand epilepsy myself until I started having seizures. Whether it’s your experience with epilepsy, benefits or any other health condition, spreading the word can only help others. Tell your story, share your knowledge and challenge misconceptions.
“It can also be very cleansing to get things off your chest yourself, too. There’s a very active and supportive community online who are only going to be interested in what you have to say. If you want to share your epilepsy story, be it a rant, a poem describing your seizures or a blog post addressing misconceptions, then you should. It’s a condition affecting people in many different ways so there are many stories to tell and be heard.”
Thank you to Luke for sharing his story for Volunteers' Week 2018.
#VolunteersWeek #epilepsy #epilepsyawareness
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For Volunteers's Week 2018 we are celebrating the fantastic people that help us make a difference. Katie is from Leeds. She has been volunteering for Epilepsy Action for 2 years in the fundraising team.
“I volunteer because I currently can’t take on paid work due to my epilepsy. I was diagnosed at 17 and struggled to adjust, although my seizures were relatively settled for the first 2 years. I got through my A Levels fine and went to university to do nursing – but every barri...er came up. I’d not had a seizure for 6 months but they said I couldn’t complete my first year and unless my condition improved I wouldn’t be able to continue into the second year. If I’d had another seizure, I would have got kicked out. I was told I could transfer into another course but there was no other course I wanted to do. And I was worried that the same issues would come up again. I felt like I couldn’t really do anything."
Katie knew that Epilepsy Action were based in Leeds, and emailed to offer to volunteer.
“So, I started volunteering in the Local Services department and now I’m supporting the Fundraising team. Mainly, I hand-write good luck cards to lots of people doing challenges. I think it helps to boost people, having that personal message of encouragement just before a big race. Once I received a card all the way from Belgium from someone thanking me for my support.”
Katie has now been asked to design her own good luck card for fundraisers.
“I’ve started sketching an idea, and hoping it’ll be good for the team. I hadn’t drawn since school, but I recently rediscovered it in the midst of some mental health problems and losing my job. Having a creative outlet is definitely helping."
“Usually, I come into the head office a few times a week, but it’s very flexible. Some weeks are quieter and I’ve taken some time off when my health is poor. Being around people does me good and it gives me a purpose, especially at the moment when I’m unable to get paid work. I can put it on my CV too. Volunteering keeps my brain active, which is really important when I eventually go back to work. And I love being part of a team. At Christmas, I received an advent calendar on my desk, just like everyone else in the team, which was really nice.
“Volunteering for a charity is the best place to be in terms of removing barriers. Here, for example, there’s a safe place to go in the office when I feel ill. There’s also no pressure to commit. If I find I’m not well enough, I can change the day I work. I wouldn’t give up volunteering, even if I found a paid job!”
Keep a look out for more volunteer stories across the week!
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