We exist to improve the lives
of everyone affected by epilepsy

Report on the events of National Epilepsy Week (18-22 May 2009)

People with epilepsy have been lobbying politicians this week, raising awareness of epilepsy and epilepsy services in their part of the UK.

Northern Ireland

On Monday over 30 members of the legislative assembly (MLAs) attended an event at Stormont to highlight the need for improved epilepsy services in Northern Ireland.
 
George Robinson MLA, who had sponsored the event, gave the opening speech. Mr Robinson, who has taken a particular interest in epilepsy, told the audience how he was surprised by the lack of services. He went on to say that this event will highlight this to MLAs.

Consultant neurologist Dr Jim Morrow also gave a speech about the effects of epilepsy on a person's quality of life, as well as the need for epilepsy specialists. Dr Morrow’s presentation highlighted the fact that meeting guidelines is impossible without consultant neurologists and epilepsy specialist nurses in place.

There was great support from Epilepsy Action branches in Northern Ireland.  Many people with epilepsy commented that while there are reasonable services available in Belfast, there was little in the way of support elsewhere. Many people also raised the issue of specialist knowledge, and a lack of knowledge of epilepsy amongst general medical staff.

Many thanks to the hosts of our event: MLAs George Robinson, Dawn Purvis, and Carmel Hanna.

Wales

Our Welsh event took place at the National Assembly building in Cardiff on Wednesday.

Around 150 people came to the event, with 30 assembly members or their researchers coming - there were so many people in attendance that we had to be given a second room!

Assembly members met with people with epilepsy from their areas, and discussed their disappointing, and all too common, poor experiences of epilepsy services. Other people were able to discuss the high quality of treatment they received, and what they believed was best about their treatment.

Many assembly members attended, even without a meeting with a constituent arranged, to show their support for improved services.

ITV Wales sent a camera crew to interview various assembly members and members of the public.

England

The Westminster lobby went very well, with at least 100 people coming along to meet with their MPs. Some had pre-arranged meetings and many went to Central Lobby and used the green card system to ask to see their MP.   More than 20 MPs or their researchers met with constituents.

Sharon Hodgson MP, who had kindly sponsored the room, gave an opening speech about the need for improved epilepsy services.

A number of Epilepsy Action branches attended the lobby and some people travelled from as far as Hull and Scarborough to make their voices heard. MPs were generally very supportive and some agreed to take steps to raise the issue of poor epilepsy services on behalf of their constituents.

There were also representatives from a number of epilepsy charities including Epilepsy Action, the National Society for Epilepsy and the National Centre for Young People with Epilepsy, as well as professionals such as Prince of Wales’ Chair of childhood epilepsy, Helen Cross.

Our thanks to Sharon Hodgson MP, Earl Howe and the Joint Epilepsy Council of the UK and Ireland.

Conclusion

We hope that all the events from the last week are the start of our campaigns, rather than the end of. We hope everyone who met a politician and was promised help, will follow this up.

Epilepsy Action would like to thank every person who, at their own considerable cost and time, travelled to Belfast, London and Cardiff. Some members travelled hundreds of miles and spent hundreds of pounds, a commitment that was not lost on the politicians at all three events.

The dedication of our members in attending the events shows the strength of feeling that exists for better epilepsy services and we hope that anyone who attended felt the event was worthwhile. We hope you can personally can take something away from the event and you feel as though their voice was heard.

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