On the 28 May 2013 a key motion on epilepsy was debated in the Northern Ireland Assembly at Stormont in Belfast. The motion was put forward by George Robinson, Member of the Legislative Assembly for East Londonderry, and chair of the All-Party Group for Epilepsy at Stormont in Belfast following much campaigning by Epilepsy Action Northern Ireland.
The motion was:
That this Assembly demands the highest quality epilepsy services meeting standards recommended by relevant guidelines; requires sufficient numbers of epilepsy specialists and early access for young people to a first appointment with an epilepsy specialist; agrees that people with epilepsy should have their condition and treatment frequently reviewed to tackle high misdiagnosis rates, and calls on the minister to ensure that people are given access to services equitable with other parts of the UK.
Mr Robinson opened the debate by declaring his interest as the chairperson of the All-Party Group on Epilepsy and paid tribute to specialist neurologists and nurses and to Morina Clarke of Epilepsy Action Northern Ireland for their “tireless and magnificent work with epilepsy patients”. He went on to state that an estimated 20,000 people in Northern Ireland have epilepsy, highlighting that this is a significant number of the population in the province.
The debate moved on to discuss a wide range of issues affecting people with epilepsy in Northern Ireland. These included misdiagnosis, support for families and carers, self-management, the National Institute for Health and Care Executive Standards, waiting times and service provision in general. Both Roy Beggs MLA and Minister of Health Social Services and Public Safety, Edwin Poots MLA, referenced Epilepsy Action’s report, A Critical Time. Mr Poots talked about cross-departmental work to address the difficulties encountered by people with epilepsy, referencing plans by the Department of the Environment and the Department of Education.
Mr Poots concluded his contribution by asking to put on record his “appreciation of the valuable contribution that Epilepsy Action makes in our bid to improve the lives of epilepsy sufferers” and stating that he welcomed the motion.
MLAs from all the political parties attended and contributed. Both the Minister and Michaela Boyle MLA mentioned that their brothers had the condition. Other assembly members in the chamber touched upon their own connections to the condition through their friends and family.
Paula Bradley MLA, on behalf of the All-Party Group on Epilepsy, summarised the main points put forward by the contributors. The motion was approved by the MLAs in attendance.
After the debate, Pete Scott, Senior Policy and Campaigns Officer from Epilepsy Action, said:
The debate has provided a great opportunity to air some of the issues around epilepsy, a condition that doesn’t receive enough attention. This is the first time that epilepsy has been debated in the Assembly, and we are delighted that MLAs from all the political parties attended and contributed.
"Epilepsy can affect anyone at any age. Both the minister and Michaela Boyle MLA mentioned that their brothers had the condition, and other Assembly Members in the chamber touched upon their own connections to the condition through their friends and family.
"We hope this will be a springboard for the minister and the Health and Social Care Board to look with purpose at the services they are responsible for, and make serious moves to improve them. We will assist the Health and Social Care Board in any way we can."
You can read a full transcript of the debate on the Northern Ireland Assembly website.