We fight to improve the lives
of everyone affected by epilepsy


Memorandum of Understanding between Epilepsy Action (British Epilepsy Association) and Epilepsy Society (National Society for Epilepsy)

1 Preamble

1.1 Epilepsy Action and Epilepsy Society both recognise the existence of each other, both working for the benefit of people affected by epilepsy, their families and carers and those with a professional interest in the condition.

1.2 The premise on which this document has been drafted is the belief that Epilepsy Action and Epilepsy Society can co-exist, develop and thrive as independent organisations working at the same time in the field of epilepsy without contention or unnecessary duplication of effort.

1.3 The purpose of this memorandum is to help build mutual understanding, recognition and trust between Epilepsy Action and Epilepsy Society for their respective work and activities which has the same purpose to improve the lives of people affected by epilepsy.

1.4 It is not the purpose of this document to designate agreed spheres of influence, activity or primacy. Neither is it intended to restrict in any way either organisation’s ability to act independently, nor as it sees appropriate, in order to meet its charitable and business objectives.

1.5 However, by helping to raise the level of familiarity between the two organisations and identifying points of commonality, this can help to inform and possibly influence the development of their services and activities.

2 Focus

2.1 Epilepsy Society has 5 main strategic priorities with the overarching aim of assisting people with epilepsy to become seizure free. The priorities are: -

  1. (i) To reduce the impact of epilepsy on the lives of people affected by the condition, by providing care, support and information.
  2. (ii) To raise awareness of epilepsy and the role that Epilepsy Society plays with the public, health and social care professionals, and policy makers.
  3. (iii) To provide assessment and medical treatment for people with epilepsy and borderland conditions.
  4. (iv) To undertake research to improve the diagnosis and treatment of epilepsy; and work towards preventing epilepsy.
  5. (v) To maximise financial and non-financial resources.

Epilepsy Society’s current business plan for 2013/14 is focused on commissioning, campaigning, community services and collaboration.

2.2 Epilepsy Action is focused on ensuring that all people affected by epilepsy have specialist health care and treatment for their condition and can lead their lives free of stigma, prejudice and discrimination. It works to improve the quality of health care services for people with epilepsy and to make these services more available; to change public attitudes towards epilepsy; to support people to be influential in the management of their epilepsy and to be a representative and diverse organisation. Its community based activities throughout the United Kingdom are focused on providing advice and information; raising awareness about epilepsy; educating people about epilepsy and providing a voice for the condition.

3 Communication

3.1 Without prejudice to business confidentiality, both organisations recognise that good and open communications between them will enhance understanding and trust as well as helping at a more practical level to keep each other aware of new plans and developments.

3.2 This communication might include the exchange of news publications and contact between members of staff and between volunteers.

4 Collaboration

4.1 It is clear that both organisations already provide some similar services, have some similar interests and intend to carry out similar activities in the future. These similarities present opportunities for collaboration as well as points of possible contention and duplication.

4.2 Initially, there is scope to identify and explore those areas of mutual interest to seek to develop specific collaborative projects which are to the advantage of both organisations.

5 Helplines

5.1 Both organisations operate telephone helplines. Client referrals between these services are welcomed, where and when it is in the best interests of the client, and in a manner which preserves client confidentiality.

6 Publications

6.1 Both organisation’s have an extensive range of advice and information publications. These are available to any other agency to use and distribute (including each other) on agreed terms.

7 Public affairs and public policy

7.1 Both organisations have an interest and are active in seeking to influence public policy where this touches the lives of people affected by epilepsy.

7.2 Influencing the design and commissioning of epilepsy health services is a priority for both organisations.

8 Membership

8.1 Epilepsy Action and Epilepsy Society both operate independent membership schemes and both recognise the critical value this represents to them. People with an interest in epilepsy should have the opportunity to become members of either or both organisations as they choose.

9 Volunteers

9.1 Epilepsy Action and Epilepsy Society are both voluntary organisations. It is understood that both have a need to recruit and train local volunteers to support their services and other work and that consequently both will be active in this regard.

9.2 Respecting that people may choose to volunteer for one or both organisations, and recognising the commitment and investment in recruiting, training and supporting volunteers, neither Epilepsy Action nor Epilepsy Society will knowingly seek to acquire or divert the other organisation’s volunteers.

10 Fundraising

10.1 It is understood that as separate charitable bodies which rely very heavily on public financial support, both organisations must undertake public fundraising activities and other fundraising work to support themselves and will seek to maximise their income opportunities.

10.2 This does not prevent the possibility of joint fundraising on a mutually agreed and time limited basis where this is in the interests of both organisations.

11 Acting Independently

11.1 It is recognised that there are some areas of similar activity which can be deemed to be crucial to both organisations and where both organisations may wish to continue to act independently, notwithstanding their commitment to this memorandum.

12 Review

12.1 This memorandum will be reviewed by both organisations 12 months after it is agreed, to determine its effectiveness in delivering the objectives specified in the preamble.

12.2 With further agreement and possible amendment, it is anticipated that the memorandum will extend into the future, continuing to assist both organisations.

Philip Lee, Chief Executive, Epilepsy Action
Graham Faulkner, Chief Executive, Epilepsy Society
25 July 2013

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