Project information

Epilepsy Society Regional Services

Launched in 2000 the Regional Services use 8 managers and c.200 trained volunteers to provide face-to-face information and support to worried or concerned epilepsy patients, their carers and family members, as well as medical professionals. We operate in over 180 healthcare settings England-wide.

This project is ongoing.

Charity information: Epilepsy Society

Epilepsy Society logo
  • Need

    Need

    Receiving a diagnosis of epilepsy can be an emotional and confusing experience. Often, patients' time with their consultant is limited, and there is too much information to fully digest. Our service offers invaluable resources, support, information and signposting to people affected by epilepsy, to help them better understand and cope with their condition. We also run awareness raising initiatives to educate and inform the public about epilepsy, and reduce the stigma that often surrounds it.

    Solution

    Our information is sought by people with epilepsy, their families and carers, as well as medical professionals. The face-to-face element provides people with the opportunity to have questions answered, and find out about additional sources of information. The regional services complement the work of neurologists and allow patients to have a fuller picture. Our schools awareness programme aims to combat the stigma surrounding epilepsy by educating pupils and promoting tolerance.

  • Aims

    Aim 1

    To ensure that everyone diagnosed with epilepsy receives the information and support they need.

    Activities

    » We provide local access to information about epilepsy via information stands and trained volunteers at neurology clinics England-wide.

    We will assess the number of people we give information to, the number of leaflets distributed and the number of volunteer hours worked.


    Aim 2

    To ensure that people know where to go to get more information as time goes by.

    Activities

    » Our volunteers promote Epilepsy Society as a source of further help, provide resources and signposting, and offer continuity for return visitors.

    We will collect data on how many leaflets and Helpline cards are distributed.


    Aim 3

    To improve the lives of people with epilepsy by raising awareness of the condition.

    Activities

    » We deliver awareness-raising programmes in schools and public arenas to educate people, dispel myths and reduce stigma and bullying.

    We will collect data on numbers of events attended, people spoken to and number of children/schools visited.


  • Impact

    Impact

    People with epilepsy and their families/carers will be better informed about their condition, and the general public will be more knowledgeable and less discriminatory. We will seek feedback from people accessing our services. We will record data from schools about decreased stigma and bullying following our awareness programmes. We will record data on awareness-raising events attended, people spoken to and information resources distributed.

    Risk

    We might not be invited into schools and hospitals but we work to ensure that the service we offer is what people want, the standard of what we do is first class and can be trusted and that people know about us. For example, 100% of schools we've been into would recommend us to other schools. We carry out regular evaluations amongst patients, neurologists and nurses to ensure we are providing a good service in hospitals.

    Reporting

    Our donor magazine, Response, often highlights stories and updates from the regional services; our annual review covers progress made annually; we report back via emails and at events; our fundraising team feeds back to individuals and charitable trusts; funders are regularly invited to visit.

  • Budget

    Budget - Project Cost: £366,560

    Loading graph....
      Amount Heading Description
      £221,900 Salaries Office-based staff and Regional Managers
      £48,160 Travel Volunteers and Regional Managers
      £44,241 Information Resources Leaflets, DVDs etc
      £26,208 Expenses, recruitment and trai Volunteer and staff expenses, advertising and recruitment costs, training costs
      £26,051 Other Office expenses and overheads
  • Background

    Location

    The beauty about our Regional Services is that they are England-wide. Our information stands and volunteers are present in hospitals and schools all over the country, and we have also produced information resources in a number of different languages spoken in ethnic minority communities. Our volunteers come from all walks of life but most have first-hand experience of epilepsy.

    Beneficiaries

    Anyone with epilepsy who utilises our service, their families and carers; medical professionals; school children with epilepsy who may be bullied, the general public.

  • Why Us?

    Why Us?

    Epilepsy Society is now 120 years old and has a rich tradition of expertise in the field of epilepsy. We have been providing our Regional Services since 2000 and have grown the information service rapidly to our current 180 services. Our c. 200 volunteers all receive a minimum 2 days specialist epilepsy training plus refresher training each year. Most of our volunteers have first-hand experience of epilepsy as well.

    Read more about the Charity running this project.

    People

    Elaine Falkner

    Elaine is the Community Outreach Manager with overall responsibility for the smooth running of the Regional Services.

    8 Regional Managers

    This group liaise with hospitals, they recruit and train volunteers and they seek awareness raising opportunities.

    C.200 Volunteers

    Volunteers undertake specialist training to ensure they have the requisite epilepsy knowledge, empathy, self-awareness and interpersonal skills.

£1964

... will fund an EIN service for a year.

• “Given that we have no epilepsy nurses at our Trust this is an essential addition to our clinics”.

Dr Butterworth, Pinderfields General Hospital