Positive Action The difference you make


Welcome to ‘Positive Action’, your latest round up of how your donations, subscriptions and support are making a difference for people living with epilepsy!

In this edition you can read about the success of Purple Day, as well as the ways that we’re raising awareness together and helping more people locally.

These things are only possible thanks to your support. Together we really are building a better future. Thank you so much!


Fundraising and Membership Manager

Epilepsy Awareness in Parliament

The All-Party Parliamentary Group (APPG) on Epilepsy is an informal group of MPs and Peers from all parties who have an interest in epilepsy.

Epilepsy Action is now responsible for setting up meetings of this group. We also provide administrative support and make sure the group is working in the best interests of people with epilepsy.

This year Epilepsy Action and the APPG on Epilepsy hosted a drop-in session for MPs on Purple Day. The group has also discussed the challenges people with epilepsy face with Personal Independence Payments.

Thanks to your support, we’ve been able to keep up epilepsy awareness in Parliament and beyond.

The next APPG event will look at epilepsy-related deaths. The event will include contributions from senior neurologists as we explore what action can be taken to address this vital issue.

You can keep up with the work of the APPG through the Epilepsy Action website

Research update

Your donations directly fund research designed to help people live better with epilepsy.

Thanks to you Epilepsy Action is currently supporting three major research projects:

  • The ‘ESPENTE project’ will identify evidence that demonstrates the value of epilepsy specialist nurses.
  • The employment support project will identify what good employment support for people with epilepsy should look like.
  • The public attitudes research project will measure the UK public attitude towards epilepsy and people with epilepsy in 2018. The project will use a method that can be repeated in future to track changing public attitudes over time.

All three projects are due to complete before the end of 2018. The findings will be available through the usual social media channels, Epilepsy Today magazine and at epilepsy.org.uk/research

Purple Day 2018

Thanks to everyone who raised money, donated and helped raise awareness for Purple Day 2018. As a result of your fundraising the Epilepsy Action Helpline will be open evenings and weekends from November 2018.

Epilepsy Action’s aim for Purple Day in 2018 was to raise enough money to open the Epilepsy Action Helpline on evenings and weekends. Thanks to everyone who helped achieve that target!

Advice and Information Services Manager, Shelley Wagstaff, says:

Thank you so much to everyone who gave so generously on Purple Day! Now even more people will be able to get expert advice and support on living with epilepsy. Not only that, we’ll be able to help different people too, those who can’t contact us during office hours.

As well as fundraising for life-changing services, Purple Day is also about raising awareness of epilepsy. Thanks to your support, together we were able to tell the world about life with the condition:

  • Chantal from the press team and media volunteer Derrick appeared on Sky News Sunrise, reaching over 4 million people
  • An article featuring Rob’s story appeared in Metro Online, reaching more than 50 million people
  • Coverage on 15 regional radio stations, including seven regional BBC radio stations and five featuring real-life stories, reached over 3 million people
  • Twelve features in regional print media reached 500,000 people

Thank you to everyone who gave their time and money on Purple Day. Together we really did raise funds and awareness to help more people live better with epilepsy!

Raising more awareness

Epilepsy Action supporters frequently tell us that raising awareness about the challenges of life with epilepsy is a priority. So it’s great to be able to say that this year Epilepsy Action volunteers have given more awareness-raising presentations than ever before!

By September 2018 volunteers had delivered 81 presentations reaching over 1000 people in companies, education settings, healthcare providers and local authorities around the UK. This compares to 76 sessions in the whole of 2017!

Feedback from the sessions shows that:

  • Before the training around 66% of people knew nothing or only a little about epilepsy. After the session 74% of people felt they knew a good amount or a lot about epilepsy.
  • Before their session around 60% of people felt ‘slightly’ or ‘not at all’ confident they would know what to do if someone had a seizure. After the training 95% felt fairly or very confident.

Thanks to everyone who booked a presentation – and to all the fantastic volunteers who delivered them! To find out more about booking a presentation or training as a volunteer, please call 0113 210 8800 or see epilepsy.org.uk/volunteer

More local support

Epilepsy Action’s network of local groups continues to go from strength to strength. There are now over 100 local branches and ‘coffee and chat’ groups across the UK and Isle of Man – with seven more groups launching soon!

People attending these groups say the major benefit is meeting others face-to-face and knowing they’ll be understood.

One recent attendee credits going to the group with real improvements in her life:

“It’s given me back my life at a time when everything was so difficult. I had bruises all over my face and I was afraid to go out in case I had another seizure. But I needed help. Afterwards I came home on the bus because I felt so much more confident. The support I got at the group gave me the confidence to challenge my benefit decision and attend the appeal, which I won. Now I feel so much more confident about the future. I am living with epilepsy and less afraid of my seizures. Thank you!”

Thank you to everyone who has given their time and donations to help set up more local support groups. You can find your nearest group by calling 0113 210 8800 or by entering your town or postcode online at epilepsy.org.uk/near-me

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Epilepsy Action

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