On 4 July 2011, Epilepsy Action officially launched Epilepsy Action Northern Ireland. The event was well supported and over 70 people attended. Seven MLAs (Members of the Legislative Assembly) attended, which is good considering they are in recess for summer.
From January 2011, Epilepsy Action started working under the name Epilepsy Action Northern Ireland. This is not a separate charity. Epilepsy Action Northern Ireland is a working name to improve our campaigning work and attract new members. Since 1999, more political power and authority has been passed to the separate countries. Therefore, there is more local decision making.
The new working name has been adopted to:
- focus our activities in Northern Ireland;
- help make sure our activities are relevant to people in Northern Ireland;
- increase the profile of the charity;
- make our services easier to find; and
- encourage more people to be supporters.
George Robinson MLA (one of the event sponsors) gave an introduction and welcomed guests. He commented on how Epilepsy Action supporters are effective lobbyists. He also explained that one of his staff members, David Gilmour, has epilepsy. He recognised how good Epilepsy Action was at supporting people with epilepsy, and their families.
We asked MLAs about the big political issues specific to epilepsy that may impact on our work over the next year. Their feedback was that funding will be a major issue.
June Massey, chair of Epilepsy Action’s council of management, explained why the name Epilepsy Action Northern Ireland had been chosen.
Dr Jim Morrow, consultant neurologist at Royal Victoria Hospital, Belfast, gave a clinician’s perspective on epilepsy care in Northern Ireland. Also, on his role as chair of Epilepsy Action’s National Advisory Council. He said that we can be proud of progress made in Northern Ireland. This was in terms of setting up one of the UK’s first specialist epilepsy clinics, and the appointment of epilepsy specialist nurses. They have been running a pregnancy register for around 15 years, which is both nationally, and internationally, recognised. As a result, the register has shown that the number of babies born with malformations over the last 10 years has dropped by over a quarter.
Dr Morrow suggested that Epilepsy Action Northern Ireland gets involved with service budget agreements. Also, that it leads on generic prescribing issues for people with epilepsy. He welcomed Epilepsy Action Northern Ireland. He asked for support from the guests and said having a local voice is the way forward. He ended by saying “local solutions for local problems – vote Epilepsy Action Northern Ireland”.
David Gilmour gave a patient’s perspective. He highlighted that epilepsy was a very individual condition. He gave an inspirational speech and specifically touched on the importance of raising awareness of epilepsy among employers. He explained that since he was given a job by George Robinson MLA, he hasn’t had anymore seizures. He talked about the impact that this has had on his life.
Epilepsy Action’s Northern Ireland Manager, Morina Clarke, closed the presentations with an explanation of what we are asking from MLAs. She spoke about how important it was over the next year to explain to MLAs exactly how the lives of people with epilepsy are affected. Also, that people with epilepsy, carers and families face a number of difficult issues. She was confident that epilepsy services can be improved. She appealed to MLAs to sign our pledge to support an All-Party Parliamentary Group on epilepsy. She also thanked everyone for coming to support Epilepsy Action Northern Ireland.
As part of the launch, Epilepsy Action Northern Ireland was given a financial boost in the form of a £19,059.35 donation from Ronnie and Helen Coulter from Hillsborough. Ronnie and Helen’s daughter, Caroline, had epilepsy before she died suddenly in her sleep in 2009. Her parents organised a Ladies Tractor Run to raise funds and awareness in Caroline’s memory.
Ronnie and Helen presented a cheque to Morina Clarke, Epilepsy Action Northern Ireland manager, at Stormont. The money raised will go directly towards helping support people with epilepsy in Northern Ireland. Three other families in Northern Ireland who have also lost someone to epilepsy were present. They have recently raised funds for Epilepsy Action Northern Ireland too.
It was a very successful day!