We exist to improve the lives
of everyone affected by epilepsy

Epilepsy Action Northern Ireland

Mark Dyer

The main Epilepsy Action contact in the region is Mark Dyer, the Northern Ireland manager.

He can be contacted by mobile on 07885 778585, landline 02890 634 942 or email mdyer@epilepsy.org.uk.

In Northern Ireland approximately 20,000 people have epilepsy. Epilepsy can affect anyone at any age and from any walk of life.

Epilepsy Action Northern Ireland...

  • Raises awareness and increases understanding of epilepsy
  • Lobbies and campaigns for a better future for people with epilepsy
  • Supports people through our network of volunteers, branches and groups
  • Organises information events for both people living with epilepsy and health professionals
  • Organises and supports local fundraising events

Epilepsy Action Northern Ireland provides epilepsy awareness training sessions to groups who want to learn more about epilepsy. These include private employers, healthcare and service providers and schools. Find out more about our training.

If you need information or support about epilepsy and would like to talk to someone about epilepsy, our trained advisers are here to help. Contact our helpline advisers by freephone, email, text and Twitterfind out more now

Find out more about groups in your area

Comments: read the 11 comments or add yours

Comments

Hi my daughter sara as gran mal epilespy she is 17 years old im looking to no wat surport is out there in cookstown northern ireland so we csn talk till somebody about it..

Submitted by marguerite o neill on

Hello Marguerite
It is great that you are looking for extra ways to support your daughter Sara.

Our Local Services Manager Morina Clarke may be able to advise you of services in your local area. She can be contacted by phone on 02890 634942 or by email mclarke@epilepsy.org.uk.

Sara may also find our young person’s information interesting.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

I would like to complain bitterly about the backlog in obtaining neurology referrals/follow-ups for young people with epilepsy in Northern Ireland. I have a young person at home with 2-3 grand mal seizures per month- who is awaiting a follow up appointment with a consultant neurologist, almost a full year since her last appointment. This is utterly ridiculous under the NHS. A teenager of 19 with such a poor outlook should not have to wait so long between appointments. Perhaps the NHS would prefer if this young, currently unemployed student (who volunteers at a local animal charity in her spare time) secured a PRIVATE appointment is order to be seen by a professional. Shame Northern Ireland, SHAME SHAME SHAME.

Submitted by Glynis Morrow on

Hello Glynis
Many thanks for your message. This sounds like a very challenging situation to be in.

The National Institute for Clinical Evidence (NICE) recommend that a person with epilepsy should have an annual review of their epilepsy and treatment. This offers each person a chance to talk about any epilepsy related issues which are important at that time. If your young person has not yet received an appointment, one way to request a review by using our treatment review letter template. This can be completed by you so that it is tailor-made to your young person’s circumstances and can then be sent to the specialist doctor by email or letter.

When a person is unhappy with NHS treatment, the NHS Constitution says they have a right to complain about the service they receive and to have this complaint dealt with properly. If your young person has an epilepsy nurse, it may be worth you raising your concerns with them. If not, you could also talk to your GP about how unhappy you are. This would give you the opportunity to explore other treatment options, which may include being referred to a different epilepsy specialist.

Epilepsy Action is aware how important it is to get the right treatment and care. We are working hard to support people with epilepsy to ask for better treatment if their seizures are not controlled. In fact, our most recent campaign Seize Control focuses on just this.

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

Karen
Epilepsy Action Advice & Information Team

Submitted by Karen, Epilepsy... on

Does Clare Watson, the new Northern Ireland manager, have any personal experience of epilepsy? Too many charities don't employ people with personal experience of the condition they are highlighting. They can never fully understand what people and their families are going through.

Submitted by Heather Ramsey on

Dear Heather
All of our staff have a good understanding of living with epilepsy. This may be through their personal or family circumstances, or through having worked closely with people living with epilepsy. People's existing knowledge is further backed up with training to ensure that our staff fully understand the many different ways epilepsy can impact on daily life. It is illegal to advertise for people with or without a health condition and as an employer we do not discriminate when employing our staff. Epilepsy Action is unique in the UK in that people living with epilepsy own the charity – it is a member-led association. Our trustees have to be members and they employ the staff. This is just one of the ways that we make sure people with epilepsy lead our work.

Thanks
Sue
Epilepsy Action

Submitted by Sue, Epilepsy A... on

Recently took eleplic fits and wondering what support is out there on how to cope with it while being a single mother to 3 children 7,7 and 9 .

Submitted by lynsey bailie on

Hi Lynsey

Your diagnosis must be a very difficult time for you all. In most cases people including children find it helpful when they understand what is happening and how to deal with a seizure.

Putting some safety measures in place could be of help to you all. Should you need any special equipment like an alarm, we have information on our daily living aids. This section also explains how some people may be able to apply to social care services.

Most children find it helpful if they know what to do and how to get help. So it could help if they had someone they could phone. This could be family or a neighbour. Putting this contact on speed dial could help as a child may be too upset to remember names and numbers. You could put a mark on the key so it’s easily recognised. For example we’ve heard of people using nail varnish or a coloured label.  If there is no one they could phone they can dial 999. The staff on the line will talk them through what to do until help arrives.

To help you and your children understand epilepsy we have information and videos to help.

Here are some suggested webpages:

We also have a book we could send for your children to read. If you would like to receive this, please contact me with your full name and address. You can do this either by email helpline@epilepsy.org.uk  or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

You may also find our new self-management programme useful. The aims are to help you:

  • Learn more about epilepsy
  • Try out new skills to help you manage your health and wellbeing
  • Achieve a better quality of life through self-care

The course is free for a limited time from January 2016. If you would like to find out more, please visit Epilepsy and you

I hope this is of help. If we can be of any more help please feel free to contact us again.

Regards

Diane
Epilepsy Action Advice and Information Team

Submitted by Diane@Epilepsy ... on

My daughter started seeing her neurologist due to severe migraines and he out her onto Topirimate, an epilepsy drug. About 1-11/2 years later, she suddenly started having seizures. She was weaned off the topirimate and put onto lamictal and he explained that migraines and epilepsy are either end of the same scale and the meds had most likely tipped her over into seizures. I feel really upset by this and wonder if there something we can do to stop this happening to others

Submitted by Concerned mum on

Dear Concerned Mum

Thank you for your message. There is thought to be a close link between epilepsy and migraine. Basically both conditions often exist together. There is a variety of possibilities: migraines that cause epilepsy, epilepsy that causes migraines, an underlying cause for both conditions, and situations in which the conditions exist completely separately.

But we are not aware of people developing epilepsy from taking Topamax for migraine. If you haven’t already, you may wish to discuss this with Migraine UK. They will have information on reported side-effects.

For your interest here is some information relating to headaches/migraine and epilepsy that I hope you will find interesting.

http://www.epilepsyresearch.org.uk/the-link-between-epilepsy-and-migraine/

https://www.epilepsy.org.uk/news/news/epilepsy-and-migraine-shared-genetic-cause

https://www.epilepsy.org.uk/news/migraine-aura-related-seizures-children

http://www.ncbi.nlm.nih.gov/pubmed/22217520

If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050. We are open Monday to Friday 8.30am until 5.30pm.

Diane
Epilepsy Action Advice and Information Services Officer

Submitted by Diane@Epilepsy ... on

I have had epilepsy for over 45 years, something like over 400 seizures. My epilepsy specialist retired end of 2013, a neurologist eventually saw me last year, I complained I probably had Parkinson's disease as well, I had a DAT scan for Parkinson's disease, which thankfully proved I was clear. I had severe shaking of my hands, roughly from when I was proscribed Epilim, at the end of 2013, a high dose to be lowered in time, which they were not. Due to my past experiences over the years, I asked my local GP could I lower my medication, he admitted he did not know about this branch of medicine, but he took MY ADVICE [over 40 years of it] A dramatic improvement ensued, but due to lack of Epilepsy care, I could have turned into a 'shaking vegetable' There are 20,000 people in Northern Ireland with epilepsy, surely there is enough 'demand' for greater local advice? I also have NF2 [neurofibromatosis type 2] which has 1 to 35,000 sufferers, I can understand lack of care for that!!

Submitted by Shaun Cheyne on