Positive Action The difference you make


Hello! Thanks for reading ‘Positive Action’, the latest update on how your support is helping people affected by epilepsy.

Inside you can get the latest on campaigns about cannabis-based medicine and how the public views people with epilepsy. There’s also some hugely impressive results about how many people you helped in 2018!

As ever, none of this would be possible without your donations, subscriptions and support. It’s that generosity which makes it possible to build a better future for everyone affected by epilepsy. Thank you!

Cassandra, Epilepsy Action Fundraising Team

Cannabis-based medicines update

Cannabis-based medicines have been a hot topic since the law changed in November 2018 allowing some specialist doctors to prescribe these drugs. Epilepsy Action has been working hard to ensure that people who could benefit can access cannabis-based medicines in a safe and timely manner.

In November 2019 the National Institute for Health and Care Excellence (NICE) is due to publish final guidance on how the NHS should prescribe cannabis-based medicines. In early August we saw a draft of the NICE guidelines and were disappointed with the recommendations. The guidelines do not explicitly recommend against prescribing these medicines for people with severe and treatment-resistant epilepsies. However, they also make no recommendations about when they should be prescribed. This means that many people who could benefit from these medicines may continue being unable to access them on the NHS.

Thanks to your support we can keep pushing for safe and timely access to these medicines through the NICE consultation process. We’ve also responded to other calls for evidence. These include involving patient representatives and attending government meetings to put people affected by epilepsy at the centre of the debate.

Find out more on this issue at epilepsy.org.uk/cannabis or call our Epilepsy Action Helpline on 0808 800 5050.

Thousands of kids’ packs sent to epilepsy specialist nurses

Thanks in part to your donations, children with epilepsy have bright, clear and interactive information about the condition. The ‘Just For Kids’ resources feature Anna, Ali and Jack who all live with different forms of epilepsy. The child-friendly webpages and kids’ packs feature items such as:

  • Stories about the different types of epilepsy
  • Quizzes and interactive activities to share at school with teachers and friends
  • Answers to the big questions, such as ‘what is happening to me?’
‘It was a fantastic little pack. The DVD was my little girl’s favourite. She understood more than I thought she would. She took the full pack to nursery afterwards’ ‘Thank you for helping me to learn more about epilepsy and for helping me to feel like I’m not the only person with epilepsy’ - Feedback from families

To date, over 54 nurses have received 2102 packs and the webpages have been visited over 62,000 times. Your support helps to make this happen.

The feedback has been brilliant. 100% of nurses said that the pack helped children to understand epilepsy more.

National Epilepsy Week – thank you!

Thanks to you, this National Epilepsy Week we reached nearly 8 million people. Your support helped us to boost the public’s confidence, so that they would know what to do if they saw someone having a seizure.

  • Here are just some of the ways you helped us to make a difference:Our amazing media volunteers were interviewed on radio and TV stations all over the UK. There were lots of newspaper pieces about the realities of having seizures in public
  • Thanks to people sharing our post on Facebook, over 1,000 people requested seizure first aid cards to carry with them
  • We hosted a successful ‘ask me anything’ on Reddit, where over 100 people had their questions about epilepsy answered by our epilepsy experts
  • Hundreds of you shared your #SeizureSaviour stories on Facebook, Twitter and Instagram over the course of the week

Thanks to your support and involvement, we’re making the world a safer place for people with epilepsy.

“I’ve never been able to contact the man or the nurse to thank them. I owe my life to them – as well as my 15-year-old son who found and helped me the first time I had a seizure.”

– Becky, talking about her seizure saviour.

Study on UK attitudes towards epilepsy

Epilepsy Action teamed up with researchers at Bangor University to get a deeper understanding of public attitudes towards epilepsy. Around 4,000 people in the UK shared their views and knowledge about epilepsy, on topics from driving to family life.

Here are the headline findings:

Risk and safety concerns

Half of respondents said they wouldn’t let their child ride in a car with a driver who has epilepsy. Almost half said they’d feel uncomfortable if their child rode in a car with a driver with epilepsy. And just over a third of people said they wouldn’t employ someone with epilepsy to babysit their child.

Personal fear and social avoidance

People responded that they wouldn’t be embarrassed if someone in their family had epilepsy. Most said they’d be happy to work with or date someone with epilepsy. A quarter of people said they’d be afraid to be alone with someone with epilepsy. And just under a quarter said they’d be nervous to be around a person with epilepsy in case they had a seizure.

Work and role expectations

Most respondents believed that people with epilepsy can be as successful as others at work and lead ‘normal’ lives. However, around a quarter believed that people with epilepsy cannot safely do many work activities that others can.

Negative stereotypes

People were asked questions such as if they thought people with epilepsy were less smart than others, or whether they shouldn’t marry or have children. The results showed that most people disagreed with the statements.

So what have we learned?

Overall, the research study found that the average person in the UK has a largely positive attitude towards people with epilepsy.

However, the research also showed that

1 in 10 people had a negative attitude towards people with epilepsy and 1 in 100 had a very negative attitude. This highlights the need for more education and will inform Epilepsy Action’s future plans.

Together we will go on campaigning for change and raising vital awareness, to help the public to better understand the challenges of life with epilepsy. Thanks to your support Epilepsy Action will provide training and first aid advice so more people will feel confident to help someone with epilepsy. Read the survey online at epilepsy.org.uk/attitudes or call the Epilepsy Action Helpline on 0808 800 5050 for more information on any of the issues.

Helping more people live better with epilepsy

Thanks to your support, more people are getting help with their epilepsy.

The Epilepsy Action Helpline is responding to 10% more enquiries than this time last year.

Visits to the ‘advice and information’ and online learning webpages have also increased. The advice pages of the website cover every aspect of epilepsy, so it’s no surprise that they had over 1.5 million visitors in 2018.

Online learning now includes courses for those working with people with epilepsy. Last year there were over 70,000 visits to the site.

Thanks to you, over 18,000 people have accessed local face-to-face support through groups, branches, training and events. This number includes the 2,347 people reached by our fantastic volunteers who gave 118 awareness presentations around the country. Attendee feedback was great – 98% rated the presentations as ‘excellent’, while 99% would recommend them to others.

A delegate from an awareness training session said: “It will greatly help my work as a disability employment adviser with customers who have the condition.”

Find out more about what’s happening near you by calling 0113 210 8800 or at epilepsy.org.uk/near-me

Epilepsy awareness reaches millions

Thank you to everyone who supported Purple Day 2019, either by raising money or awareness in your community. Purple Day is always a great opportunity to get people talking about epilepsy. This year, we focussed on the 1 in 240 children in the UK who are affected by epilepsy.

With your support, people learned what life with epilepsy is really like from those living with the condition:

  • Children spoke in their own words about epilepsy in a fantastic film (epilepsy.org.uk/kidsfilm), seen by over 400,000 people on Facebook and YouTube alone
  • Jasmine, Amrit and Ryan shared their stories with the MailOnline, Metro, BBC Radio Derby and The Independent
  • Over 30 MPs engaged with Purple Day, even submitting parliamentary questions on behalf of people with epilepsy

Thanks to your time and donations, the UK turned purple for a whole day and millions of people increased their awareness of epilepsy. We raised over £50,000 as a result of your support – this will provide kids’ packs and in-school training for children all over the UK.

Philip Lee, chief executive of Epilepsy Action said “Purple Day is all about putting people with epilepsy front and centre, and reaching as many people as possible. This year we highlighted the true impact of epilepsy on children and young people – this was only possible due to the amazing support of those who gave their time or money. We cannot thank you all enough.”