We exist to improve the lives
of everyone affected by epilepsy

Positive Action newsletter, autumn 2016

The difference you make

Smiling faces


Funding vital research

For many people, research represents hope for the future. Thanks to you, Epilepsy Action can continue to fund vital projects with potential to make life better for people affected by epilepsy. Your support also means researchers can connect directly with people with epilepsy.

The Epilepsy Action website now has a page summarising research projects looking for participants and encouraging people to take part.

Michelle Cashin-Cox is just one researcher who was able to draw on the experiences of Epilepsy Action supporters. A pharmacy student at Medway School of Pharmacy, Universities of Kent and Greenwich, Michelle approached Epilepsy Action for help advertising her project ‘Living with Medicines’.

Michelle was hoping for around 200 survey completions. Following promotion on the Epilepsy Action website and email, she had over 500 responses. Thank you to everyone who responded!


Helping children understand their epilepsy

Kids can now learn more about epilepsy by watching cartoons thanks to your support and a grant from the Morrison’s
Foundation.

The Morrison’s Foundation funding has allowed Epilepsy Action to create six short animations explaining epilepsy to children. The short films have been made to help children understand and feel more comfortable about their epilepsy. Available online, the animations cover different seizure types, taking medicine, feelings and safety.

The idea has already proved popular with supporters, drawing over 11,000 Facebook views in the first week! Thanks to all the
viewers’ who have left feedback on Facebook and YouTube. Your response has been overwhelming! Here’s just a couple
of examples:

“Love, love, love these videos! My 10-year-old girl has epilepsy and she loved them too! Having the children telling their own stories made her realise that there are lots of other children living with epilepsy and coping with the same issues as her. Thanks!”

“I am very pleased that you have come up with something so simple yet so affective to help the young children and young adults. It’s
hard enough to cope when you are an adult dealing with epilepsy so I am so pleased that this is going out to our young children."

Your voice – louder together

Thanks to you, Epilepsy Action is the UK’s loudest voice for epilepsy. With your support, Epilepsy Action actively campaigns to improve epilepsy services and raise
awareness of the condition among decision makers.

Since the last edition of ‘Positive Action’, we have spoken out on issues such as benefits, epilepsy specialist nurses and air travel.

Fairer benefits

Thanks to all your feedback, we know that for many people with epilepsy, Personal Independence Payments (PIP) can make a real difference to their lives. PIP is a benefit which helps with some of the extra costs caused by long-term ill-health or disability. Epilepsy Action has recently asked the Department for Work and Pensions to make changes to how they decide who gets this benefit. If taken forward, these changes will mean that people with epilepsy are given a fairer assessment and are awarded the benefits they need.

More nurses in Wales

With your support, we have recently launched a campaign for more epilepsy specialist nurses in Wales. These vital nurses promote good practice and act as a specialist resource in the diagnosis, treatment and care of people with epilepsy. We’ll also be looking to roll this campaign out to other areas of the UK in the future.

Safer air travel

Epilepsy Action will shortly be working with the Civil Aviation Authority. This is to make sure that appropriate guidelines are in place to support passengers with hidden conditions, such as epilepsy.

Get involved

Find out more about Epilepsy Action’s campaigning work and how you can make your voice heard


Your gift of specialist advice and trusted information

Epilepsy Action helpline advisor

Epilepsy Action’s advice and information remains in high demand from people living with epilepsy around the world. And it’s only your donations, subscriptions and ongoing generosity that makes it possible to keep up with that demand.

Thanks to you, Epilepsy Action’s specialist advisers are able to keep the information pages of the website up-to-date. In the past few months alone we’ve updated our online advice on:

Online or on the phone, Epilepsy Action is the only charity that gives you specialist information accredited by the NHS England ‘Information Standard’. That means your support directly enables more people to get trusted information when they need it most – whether that’s the general public, or even epilepsy specialist nurses:

“I have just come off the phone to a lovely lady at the helpline who gave me some information I needed and she was super! Without you and your support of me, I wouldn’t be able to deliver to my patients. Without the website and helpline and knowing there is someone to
turn to, it would have been so much harder. Thank you all very much.” - Raechel Robinson, epilepsy specialist nurse, Hereford


Supporting more people to be seizure free

Thanks to you, since April 2016 we’ve held at least one ‘Living with Epilepsy’ event every month.

Taking place throughout the UK, ‘Living with Epilepsy’ events give you the opportunity to learn about resources and support available in managing your epilepsy.

The events so far have been well attended, and participants clearly felt they had benefitted from attending:

“Please offer more similar events – it was very useful!”

“Lots of info given with even more available. Thank you.”

Did you know? Of the 600,000 people with epilepsy in the UK, around half are still having seizures. With better treatment, an estimated 100,000 more of those people could be seizure–free.

Keep in touch!

You may have seen newspaper articles recently talking about changes to how charities can keep in touch with our supporters.

New rules for 2017 will alter when and how Epilepsy Action can send you information by post, phone, email and text message.

Epilepsy Action is committed to giving you full control over the information you receive and the ways in which you receive it.

When you first contact Epilepsy Action or our trading company, we’ll only ask you for the personal details that we need. We’ll explain why we need them and we’ll keep your details safe. Neither Epilepsy Action nor its trading company sells or swaps supporter details with other organisations.

We will only share your details with another organisation if they are working on our behalf. Any company doing so must first agree to follow our rules on how they store and use your information.

As an Epilepsy Action supporter you can update your contact details and preferences at any point. All you have to do is call the membership team on 0113 210 8800 or use the online form.

Thank you for being part of Epilepsy Action – together we really are stronger!

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