About 5,500 people in Suffolk have long-term epilepsy, yet it remains very much a Cinderella condition, kept secret, inadequately recognised and poorly funded. People are often anxious to prevent others know they suffer from it because they fear stigmatisation ostracism and discrimination – with good reason. Yet over 70% of people with epilepsy are completely seizure-free through drugs and are leading ‘normal’ lives. The other 30% (including my daughter) live in hope. For the last few weeks she has been lucky enough to be seen at the NSE Sir William Gowers centre – the last port of call for people who difficult-to-control epilepsy – while they try to stabilise her condition.
There are generally about twenty people here being assessed: she has already met several others from Suffolk
EADT coverage can be found here:
As a young people’s epilepsy charity we are only too aware of the patchy nature of epilepsy services for under 25s, and for this reason we provide training for health and education professionals as well as campaigning for change through our Champions for Childhood Epilepsy Campaign. I know NSE provide a similar training service and you work closely with them, but I thought you might be interested to know of our work with young people and schools – http://www.ncype.org.uk/campaign, and the wider work all the epilepsy charities undertake together http://www.jointepilepsycouncil.org.uk. If you or other would like to find out more about how we might help you press for better young people’s epilepsy services in Suffolk, do contact Alison Cornell here on acornell@ncype.org.uk or tel 01342 832243.Best wishes for your fundraising!
Thank you very much Sarah. I think it would be unprofessional in this forum to say exactly what I think of the epilepsy provision for the over-16s in Suffolk. Buck-passing would be a fair, even a charitable, description – though my own family is fortunate in that we have a very good GP.
I will definitely be contacting you for hadvice on how best to press for a better service for the young people of Suffolk!