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In 1991 Keith and Elaine Dowell's son Andrew became ill with Encephalitis. He was seven years old. Although he was only in hospital for three weeks he suffered a very high level of seizures, did not speak and behaved very strangely. Almost 20 years later, Andrew has intractable epilepsy, no communication and obsessional behaviour. However he lives a very fulfilling life in a Camphill Community, a residential care facility, in Scotland.
Elaine began looking for information about this condition that had so devastated the whole family. There was none – except some papers from the 1920's. She asked if there were other families with a child affected by Encephalitis. There were none – she was told. Then in 1993, through Contact a Family, Keith and Elaine were put in touch with two other families and the Encephalitis Support Group was founded.
The Encephalitis Support Group was launched in 1994 with a large meeting in Leeds. The initial corporate colour was green, the information a simple leaflet and newsletters were very primitive. Support was by telephone with occasional meetings across the UK, including the first Family Weekend. A big breakthrough was a grant which paid for equipment and a small salary for Elaine. The web site was established and a parent pack produced with information written by professionals some of whom are still with us on our Advisory Panel.
The office based moved from a bedroom in Elaine's house to a small unit in Malton, then to its present centre and the staff team rose to six. There was a big jump in the quality and quantity of our information material and the jigsaw logo was adopted. We conducted the first survey of the consequences of encephalitis and the findings were presented at the World Brain Injury Congress. The professional Advisory Panel expanded and a Professional conference was held. We changed our name to the Encephalitis Society and celebrated the first 10 years with tea at the House of Commons.
Punching above our weight
The web site is hailed as the most comprehensive source of information on Encephalitis anywhere. An independent evaluation of our Support service hailed it as "A Light in a Very Dark Place". We deliver tailor-made training programmes to professionals. Prof. Barbara Wilson, OBE, becomes our President, and Martin Kemp our Patron.
We aim to expand our support service to reach more people. To give a more personal service we will train and accredit volunteers to be representatives of the Society in their local areas. Online, Forums and social networking will bring together people in mutual support. E-learning opportunities are envisaged with accredited schemes at levels from Foundation to Professional. Further strides will be made into research with closer collaboration mong our expanding forum of researchers. Our dream is to have a Respite / Assessment Centre which would be a haven for recovery and a centre of excellence. We are also mindful that as devastating as Encephalitis can be for people in the western world, its impact on people in developing countries is far greater.
The Encephalitis Society is the operating name of the Encephalitis Support Group which is a registered Charity and Company Limited by Guarantee.
Registered in England and Wales No. 4189027. Registered Office as above. Registered Charity No. 1087843.