Epilepsy Action in Northern Ireland and Wales

From January 2011, Epilepsy Action has been working under the name Epilepsy Action Cymru and Epilepsy Action Northern Ireland in Wales and Northern Ireland. These are not separate charities, just identities designed to describe, identify and represent our work. We hope this will help us raise our profile in the two countries to improve our campaigning work, promote our services and attract new members and supporters.

Ann Sivapatham (Manager for Wales) and Morina Clarke (Manager for Northern Ireland) introduce themselves and talk a little about how campaigning differs in Northern Ireland and Wales.

Epilepsy Action Cymru

My name is Ann Sivapatham and I am the Wales Manager for Epilepsy Action Cymru. I have been working for Epilepsy Action for nearly four years. Before coming to work for Epilepsy Action I worked for Breast Cancer Care Cymru for four years. Before that, I worked for seven years for Epilepsy Wales. So I have over ten years experience of working with people with epilepsy.

My interest in epilepsy was sparked off nearly 35 years ago when I met my first husband. He developed epilepsy at the age of 17 and we met when we were both 18. Before working in the epilepsy field I knew very little about epilepsy and I was very scared when my ex-husband had a seizure. Looking back I didn’t really know anything if I am honest. There were no books in the library, no internet and nobody ever told me that there was a charity that provides support for people and their families. Then eight years ago my mother developed epilepsy after a stroke. My mother sadly died in 2007 after having a very prolonged seizure from which she never recovered consciousness. So I am very passionate about the condition and committed to improving the lives of people who live with the day-to-day reality of seizures. 

My role as Wales Manager is to develop and support community-based services for people with epilepsy, their families, carers, health professionals, social services and education. Conferences, seminars, action days, professional days, branch development, public awareness and working with the Welsh Assembly are very much part of the work I do. The work is varied and never boring. The best thing about the job is that I get to meet lots of different people and they all have a different story to tell.

I also represent Epilepsy Action on the Wales Neurological Alliance and the Long Term Conditions Alliance. Being part of these alliances not only means that epilepsy is represented in Assembly consultations and meetings. It also means that Epilepsy Action is able to keep up to date with what is happening in Wales politically. 

I am looking forward to working with the head office campaigns team on campaigning issues in Wales. Wales is very different from England but I would imagine more similar to Northern Ireland. Here in Wales we have a different relationship with our Assembly Members than people living in England have with their Members of Parliament. It is so easy to just pick up the phone and talk to them. I have also found that a number of the newer Assembly Members welcome being given questions to ask of the Health Minister in the Assembly.

There are lots of interesting challenges ahead. Wales has a referendum in March to determine whether we have more powers in Wales. There is also an Assembly election in May. So you can be sure that Epilepsy Action will be keeping the Welsh Assembly Government on its toes. Who knows what will happen in 2011? What we do know is that Epilepsy Action will be taking on the challenge of meeting any changes and challenges positively and enthusiastically. I see myself as the eyes and ears of Epilepsy Action in Wales and with the new identity of Epilepsy Action Cymru what an exciting year we have ahead of us.

Epilepsy Action Northern Ireland

Until joining Epilepsy Action, I was unaware of the many difficulties people with epilepsy experience in life.  These range from coping with a diagnosis of a condition that has been very much misunderstood, to accessing services that can help them improve their quality of life. My role now as Local Services Manager is to support the delivery of Epilepsy Action services in the community. This is done in different ways - through the voluntary branches we have in place, working with accredited volunteers, providing awareness and support for lay and professional groups. But we also fundraise, train our volunteers and by actively campaign for better local services.

While it is acknowledged that the understanding of epilepsy has improved in recent years, living with the condition still continues to have a wide ranging impact on all stages of life. Approximately 13,000 people in Northern Ireland have a diagnosis of epilepsy, making it the biggest group of patients affected by a neurological condition. At least 210 new cases of epilepsy are diagnosed each month here and we have a shortage of medical care staff to deal with the current numbers. Unfortunately we continue to have children being disadvantaged in school leading to underachievement, impaired social development and future career opportunities.  Adults face additional challenges in relation to driving, employment, relationships, stigma and, for many, poor self-esteem resulting in isolation and a reduced quality of life.

Engaging with the Northern Ireland Assembly has been very beneficial in getting epilepsy included in the agenda for health here.  We enjoy a good working relationship with local Members of the Legislative Assembly (MLAs) and their political researchers.  They have been supportive of the campaigning work we have carried out in recent months. They have put down questions on decisions we have challenged on health cuts and generic prescribing that particularly affect people with epilepsy here.

I continue to represent Epilepsy Action on both committees of the Northern Ireland Neurological and Long Term Conditions Alliances. This is equally beneficial to the work we do locally. Four in ten people in Northern Ireland live with a long term health condition and membership of these alliances helps us strengthen our voice to local politicians.

Pete Scott has been very supportive of the campaigning work in Northern Ireland, he has a wealth of knowledge on policies and procedures within government. I welcome this chance to improve communications with our campaign supporters.  We have an Assembly election on 5 May in Northern Ireland, so we expect to be busy listening to what local candidates say they will do for health in the next government. What we now need is for people to show their support by getting involved in the work we will be doing through the Campaign Supporters’ Group!