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Independent Evaluation

Volunteer Regional Representatives - Independent Evaluation

In 2014 we commissioned York Consulting Ltd to independently evaluate our Big Lottery Funded Volunteer Regional Representative Scheme. 


You can read the executive summary here

Their evaluation concluded: 


"The evidence shows that the Volunteer Representative Programme is highly valued by all that use it. It has important and wide-­‐ranging benefits for those affected by Encephalitis and their families and carers, and for the Volunteer Representatives themselves.

The support provided is greatly appreciated with many affected by Encephalitis stating that they did not know how they would have coped without the support of The Society and the Volunteer Representatives."


All credit goes to our amazing team of volunteers - THANK YOU - you can learn more about them here.

Independent Evaluation

The Society commissioned the independent consultancy, Acton Shapiro, to carry out an independent evaluation of its support services, in order to identify the impact of the service and to make recommendations relating to its future. The project ran for an eight month period from March to October 2005.

The evaluation provided very strong evidence that the service is meeting the needs of its users and fulfilling its aims. The report concluded that: “It is clear that the vast majority of contacts (with the Society)are perceived as extremely helpful. This is particularly important, given that many families feel that they do not receive adequate information or support from the statutory services". "It is clear that the service reduces feelings of isolation and stress and enables people affected by encephalitis, their families and carers to come to terms with the illness and its consequences". "Service users feel comfortable about contacting the service and many do so again and again". "Response times to contacts are considered reasonable, and information (both verbal and written) is considered accurate, comprehensive, accessible and user-friendly".

"Not only do the service users feel reassured and comforted by the support service, but there are also many examples of how clear advice and information have resulted in tangible outcomes - in terms of new treatment programmes, improved relationships or more confident self-management of the condition".

We are extremely proud of these findings and thank all the people involved in the Society who have enabled its services to achieve such high acclaim and praise. The full report runs to some 44 pages, click here for a copy.

A Light in a Very Dark Place

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.