The Epilepsy Society, previously called The National Society for Epilepsy (NSE), is an internationally renowned centre for care and research for people with epilepsy. This is a charity which receives nowhere near enough funds to provide for all the accomodation needed to meet the demand for seriously ill people with severe epilepsy. Most residents now on site have epilepsy which cannot be fully controlled, even with a multiple seizure control medication regime. They therefore specialise in caring for these people and all care staff have to be fully trained in emergency procedures for epilepsy. The Epilepsy Society have made some great progress by building an extension for the most chronic cases and have now managed to build two of three further 2-wing homes needed, a Supported Living home with the help of a very generous donation, and a genetics research centre.
In recent years many of the more able residents have had to move off-site following Government policy and rejected planning permissions from Chiltern Planning Authority straining budgets.
The accepted new buildings, built to modern Building Standards, replace single storey with two-storey designs. Some consider 2-storeys was inappropriate for the less able residents, but the vast improvement in the accommodation standards was welcomed by all.
Funding such an expensive building program, and completing a the third twin-wing home, is currently going to have to be at the expense of the sell-off of a substancial area of the Society's land. This land will undoubtedly be used for many houses, providing profits for others and denying space for later expansion of the site for the intended use designated by the original benefactors. This is a very hard trade to make.
The Epilepsy Society also provide many information and support services for medical and care training, and people with epilepsy that are able to follow a career in the community.
Major issues currently are the harder fight for parents to obtain funding to obtain a place at the Epilepsy Society, and imminent threat of the withdrawal of the Mobility Allowance by the Government for parents of residents.
It is difficult to explain all the issues involved here. However, many parents live well away from the site - some many hours travel away. Help with special transport costs to allow the resident to come home for visits, go on a short holiday once a year (where appropriate and when they are well enough- rarely more than 3-7 days due to the high cost of paying for staff shifts to look after them for 24 hours a day), special wheelchairs and vehicle fittings, extra payments for staff to bring them home and back when parents become too old or frail to visit the site or drive, and trips out to the cinema or theatre or a park are some of the vital things that Mobility Allowance helps to meet.
Please visit their website on this link for further information from the management. Your support would be very much appreciated - you could even add this charity to your EBay account to provide a donation each time you purchase from EBay! http://www.epilepsysociety.org.uk