We fight to improve the lives
of everyone affected by epilepsy

 

Support in your area

A lifeline close to home

Epilepsy Action has an extensive network of branches, coffee and chat groups and volunteers throughout the UK. These groups provide local support to people with epilepsy, their family and friends and professional carers.

Find support near you

Coffee and chat groups

Coffee and chat groups are being set up all across the country. These give people living with epilepsy the chance to meet each other in ordinary venues like cafes, tea rooms and coffee shops. They offer a relaxed way to meet new people, share experiences and get information on how to learn more about epilepsy.

Branches

Run by volunteers, most branches hold regular meetings and offer a mixture of social events and informative talks and discussions.

For many people with active epilepsy a sense of isolation and a lack of understanding can be a problem. By coming along to a branch meeting people can talk to others who understand their circumstances. They can also help raise awareness of epilepsy in the local community. Find out more about our local branches:

Find support in your area

Raising epilepsy awareness in your area

We have a network of volunteers who are recruited and trained to deliver epilepsy awareness sessions to any organisation that would like to learn more about the condition. These volunteers can offer a thorough introduction to epilepsy to a range of audiences. They also provide information about where to get further advice and support for the condition.

Our  Local Services Managers and volunteers also run a series of awareness and information days across their areas. Sometimes they are run with a branch or group, often as a way of raising awareness and developing a new service in an area.

Find an event in your area

Comments: read the 15 comments or add yours

Comments

Hi I’ve had 2 seizures and I’m currently on lamotrigine and reducing keppra - I’m looking to get back to work and was wondering does anyone work a 12 hr night shift in a factory ( metal ) if so how long and have you had any more seizures

Submitted by Gavin on

Hi, I've had a look but there are no coffee meetings, events, etc. In North Devon. Is there any chance there will be one set up at all? I'm happy to help and volunteer, it's my girlfriend that has epilepsy and she's feeling very cut off and does not know anyone else with it. If anyone is interested or wants to chat then let me know!

Submitted by Caillin spain on

My son has epilepsy he is 22 would also be interested in anything happening in the North Devon area, or setting something up if we can get more of us in this area together.

Submitted by Amanda on

I live in Gloucestershire looking for a support group my 18yr old newly diagnosed with epilepsy, struggling to cope and he is now depressed

Submitted by Susan ramsey on

Hi Susan,

At the moment, our nearest groups are in Hereford and Worcester.  I hope they are of use.

Best wishes, Mark, Epilepsy Action

Submitted by Mark@Epilepsy Action on

I’m quite dissapointed that you don’t help with PIP appeals. My 28 yr old daughter has been refused and as the figures for refusal are so high I feel that a
charity like yourselves need to give front line support and
assistance to enable those with epilepsy don’t lose out in the
benefit system
You also don’t offer any practical help at all either to the sufferers of epilepsy

Submitted by Sylvia Lucas on

Dear Sylvia

Thank you for your comment.

We are very aware how difficult the whole benefits system is for people to find their way around. This seems to be particularly true for PIP. We have put as much useful advice as we could on our website. And our Campaigns team have been working extremely hard to improve the assessment process for people with epilepsy. We would need a national team of benefits experts to help people with the PIP appeals. As a charity we just do not have the resources for this. We are hearing that although many people with epilepsy are initially refused, many of them are successful at appeal. I really hope this is the case for your daughter.

This is a list of all the things we do. There are always things that are going to be left off it. We regularly ask our members for feedback about priorities. This is the 5 year plan resulting from the last survey.

So thank you for your feedback. And do look out for the next stakeholders’ survey on the work of the charity.

If you would like to take your concerns further, you are of course welcome to go through our complaints procedure.

Regards

Cherry, Epilepsy Action Helpline Team

Submitted by Cherry@Epilepsy... on

Is it possible EA could set up an online friendship/support group for younger people with epilepsy? Our 19 year old feels cut off and unsupported, apart from close family. I feel a social network would be of great benefit to young people, allowing them to share their experience and possibly build friendships.

Submitted by Mark Bradley on

Hi Mark,

Have you tried Reddit? The epilepsy subreddit is full of people from across the world with epilepsy.

You can find the epilepsy subreddit at reddit.com/r/epilepsy

Rich

Submitted by rich on

Is there no support in the Brighton, East Sussex area?
I can't seem to find anything close to me, hopefully I'm just not using the site properly.

Submitted by Tara on

I had been 40 years clear of seizures. Then hospital put me on tolterdine which caused me to have a seizure. Stopped taking them, had to stop driving for a year. Now due to shortages of medication “questron light” I was put on chloestragel for bile salt malabsorption . On 22nd Nov I had another seizure, I had read the
Leaflet and it said not suitable for people with epilepsy and on phenytoin! I queried this with the drs but they told me it was trial and tribulation!! Now I can’t drive again because those pills caused me to have a seizure, can I claim compensation for all this inconvenience caused partially by the shortages of medication?

Submitted by Alison Goodyer on

Hi Alison – This sounds like a really upsetting situation for you.

We know that sometimes doctors have to weigh up risks and benefits in deciding treatment and this can make decision making tricky, especially if there are medicines shortages. We weren’t able to find information about contraindications on the patient leaflet for Cholestragel that we could find so if you still have this information we’d be interested to see it.

You may be able to use the NHS complaints procedure or the MHRA yellow card system to raise this as an issue. But we don’t know of any way you can claim compensation for what has happened.

It can be tough not being able to drive for this period as well. In case its helpful we have some information about concessionary travel you might be entitled to while you can’t drive. If you are working you may also be able to look at the government Access to Work Scheme.

We have raised issues about medicines shortages and we are keeping an eye on epilepsy medicines shortages we know about through our Drugwatch pages. We will forward your comment to our campaigns team.

Mags

Epilepsy Action Helpline Team

Submitted by Mags - Epilepsy... on

Cholestagel leaflet states that:
“Cholestagel May affect the way in which the following medicines work. Anti-epileptic medicines (medicines such as phenytoin, used to treat epilepsy”. I also read that Cholestagel can affect the absorption rate of phenytoin. So why on Earth was I put on this medication?????

Submitted by Alison Goodyer on

Dear Alison

Thank you for coming back to us.

As my colleague suggested, for you to get answers you will need to use the NHS complaints procedure and report this to the MHRA yellow card system.

You may also find it helpful to contact the charity Action Against Medical Accident. They support people affected by avoidable harm in healthcare; to help them achieve justice; and to promote better patient safety for all.

If we can be of any more help, please feel free to contact our helpline team directly. You can either by email or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy Action Helpline Team

Submitted by Diane - Epileps... on