We fight to improve the lives
of everyone affected by epilepsy



February 2004

Epilepsy Action is governed by a board of sixteen Trustees (known as the Council of Management) elected by the members of the Association. The Council meets six times a year. It is the Council’s responsibility to ensure the charity is managed and governed in a proper manner and to consider and set Association policy. The following is a brief summary of the outcomes of the Council’s meeting on 3rd February 2004.

  • Decision taken to publicise regular reports on Council activities in Association publications.
  • Recommendation from the Council’s Education Committee approved for the Association to subscribe as a member to the National Association of Special Educational Needs (NASEN).
  • The Lord Hastings Award, 2004 to be given to Dr Tim Betts in recognition of his outstanding contribution to improving the lives of people with epilepsy.
  • Bentley Jennison recommended to be proposed to the AGM in June for re-appointment as auditors to the Association.
  • Four Council members to attend the NCVO 2004 Trustee conference.
  • Branch of the Year, 2003 to be awarded to Conwy & District branch. Highly recommended branches were Norwich and South Manchester.
  • The following people to be recognised as Branch Member of the Year, 2003

Ann Abbott                 Lancaster                                                        

Val Egan                      Birmingham East

Brenda Gillett             Bath                                                                

Janet Hobbs                West London                                                 

Andy Holmes              Exeter                                                            

David Ramsey             Solihull

Steve Randerson         Sittingbourne

Robert Smith               Nottingham

Pauline Spencer          Huddersfield

Eileen Ward                Norwich


April 2004

Annual Accounts for the year ended 31 December 2003

Council reviewed the Annual Accounts for the year ending 31 December 2003 with the assistance of Mr Neil Sevitt, representing the Association’s auditor.

The highlights noted were:

  • Income at £2,985,000 was just short of £3m, compared to the previous year’s income of just over £2m.
  • Although net legacies were high it was reassuring that had been an increase in donations and fundraising.
  • Total expenditure was £2.4m against £2.1m the previous year
  • Overall £574,000 surplus

Mr Sevitt summarised that the Association has shown remarkable growth over the last five to ten years as a result of good housekeeping, good management, good systems and a good profile.

The Council of Management approved the draft accounts for 2003.

Report on the Charity Commission Review Visit

Council received a draft report prepared by the Charity Commission following their recent routine visit. The report highlighted areas of good practice along with a few technical matters to be considered, there were no issues of significance for the Charity. A full review of the report and recommendations would be made to the next meeting of the Council of Management.

NCVO 2004 Trustee Conference

The Chair, Mr Ron Radley, reported on the NCVO Governing with Confidence Conference attended by himself and two other trustees. The event had proved to be very worthwhile and provoked thoughts about the role of the Trustee and it highlighted the real need for Trustees to have a training and development programme. It was agreed that the main issues would be covered during the annual Council Training Day in October.

Review of Investment Policy

Mr Radley reported that the Finance & Strategic Policy Committee had undertaken the three year in depth comprehensive review of Epilepsy Action’s Investment Policy and Council approved an amended document.

Investment Advisors

Following a review by the Finance & Strategic Policy Committee the Council of Management decided to retain Brewin Dolphin Securities as the Association’s Investment Advisers.

Conflicts of Interest 

The Chief Executive is developing a draft conflict of interest policy to cover all Trustees and committees.

Research and Education Advisory Panels

It was agreed that Epilepsy Action should invite a number of professionals to join either the Research or Education Advisory Panels.

Education Officer

The Community Fund turned down an application to fund a new post of Education Officer however Council decided to proceed with this post which will be part funded from the Collin Woods Memorial Fund.

Epilepsy Action Awards 2004

After careful consideration Council decided that none of the nominations for the Epilepsy Action Award 2004 had reached the standard set of 'a significant contribution has been made to improving the lives of people with epilepsy either directly or indirectly' and so the award will not be made this year. However it was agreed that a Gold Award certificate should be awarded to Jonathan Boyd.

Staff Developments

Council considered a number of proposals regarding staffing developments and agreed to the following changes to staff positions:

  • The two fixed term contract staff posts in fundraising currently being funded by the Development Plan become permanent positions.
  • The PR Manager post becomes a full time position.
  • The Sapphire Nurse Co-ordinator post becomes a full time position.
  • The Education Officer post is recruited as a permanent post.
  • The creation of a new post of National Manager of Regional Services

May 2004

Council agreed to introduce a new policy and procedure for the declaration and monitoring of potential conflicts of interest for Council Members. A register of Council Members’ interests is now being compiled and this will be available for public scrutiny.

The Council agreed to a recommendation from its Research committee to initiate 30 new prizes for epilepsy research. There will be five prizes of £500 each and twenty five prizes of £100 each. These are in addition to the prizes already offered by the Association to encourage and recognise epilepsy research. The Research Committee also reported that it is reviewing the Association’s strategic plan for research and will be reporting back to Council on this in October.

The Council adopted and approved an updated strategic plan for its Education work which will run from 2004 to 2007. This includes the appointment of a full time Education Officer to the staff of the Association.

Council agreed to create public contact addresses for the Chair of Council to improve peoples’ direct access to the Council. Contact will soon be possible via a special mail address and a dedicated email address for the Chair.

Some small updating amendments were made to the terms of reference of the Association’s Advisory Panels. Panels exist for Education, Research, Clinical practice and policy and for Wales.

The terms of reference for the following Council Committees were re-approved: Education, Finance and Strategic Policy, Research and the Standing Committee. Council also agreed to establish a new Corporate Governance Committee to monitor and support Council working practices.

Finally, Council decided to instigate a comprehensive review of the Association’s constitution, its Memorandum and Articles of Association. The constitution has not been reviewed since 1997 and Council is keen to ensure that this important governing document is kept relevant and up to date. It is anticipated that the review will be a lengthy process but that initial amendments at least should be forthcoming for consideration by the membership at the Association’s Annual General Meeting in 2005.

July 2004

Ron Radley was re-elected as Chair of the Council, Mike Harnor was elected as Vice Chair of the Council and Richard Chapman was elected as Honorary Treasurer of the Association. Council expressed its appreciation to the former Vice Chair, Jonathan Bird, and to the former Honorary Treasurer, Mary Clayfield.

Council agreed the membership of its committees; Finance and Strategic Policy, Education and Research. Council also agreed terms of reference for a new committee on corporate governance. This new committee will have its membership confirmed in October. The Council Working Practices Review Group was formally wound up, now that the last of its business has been concluded.

Council also agreed terms of reference for the Association’s Clinical Advisory Panel, Advisory Panel on Wales and a Staff Appeals Panel.

The Council received a report from the Finance and Strategic Policy Committee that informed it that the committee had thoroughly reviewed the Association’s current revenue budget and 2004 business plan and it made no recommendations for any amendments.

The Education Committee reported to Council that Bert Aldenkamp and Dr Powell had both accepted invitations to join the Association’s Education Advisory Panel.

Council considered a report on the success of the 2004 Annual General Meeting (AGM) and decided that the 2005 AGM should be similarly held as part of a wider conference at a venue somewhere in the south east or south west of England.

Council Members considered a report from the former Vice Chair, Jonathan Bird, on the 2004 appraisal of Council. It was decided to remit this report to the Officers and Chief Executive and for them to bring forward recommendations for any action at the next meeting of Council in October.

October 2004

the Council of Management reviewed nominations of people to serve on the Association’s Research Advisory Panel and Education Advisory Panel. The Council also filled two casual vacancies on its own Research Committee and its Finance & Strategic Policy Committee.

Council Members considered some topical issues including the imminent launch of the new NICE Guidelines for Epilepsy; the Mental Health Bill and its implications for people with epilepsy; the Charities Bill and its implication for the governance of the Association.

The Research Committee reported that Dr Ingram Wright was re-elected as its Chair and the Education Committee reported that Mr Ron Radley was re-elected as its Chair and Mr David Streets as its Vice-Chair.

Council agreed the membership of its new Corporate Governance Committee and this will have its first meeting before the end of the year. Among its initial items to consider will be the appraisal of Council.

The day after the Council meeting, Council Members attended their annual Training Day and received presentations from the Association’s auditors, investment brokers and solicitors. They were updated about the forthcoming changes to the laws and regulations affecting charities in relation to finance and governance. Council Members also undertook their annual detailed risk assessment of the Association’s activities.

December 2004

The 2005 Revenue Budget was considered and approved. Both income and expenditure for 2005 is forecast to exceed £3 million.

The Association’s Investment Policy was amended with a new protocol to govern the buying and selling of investments. Council will further review the Policy during 2005, including consideration of the Association’s policy on the level of financial reserves it should maintain.

Postgraduate research bursaries of £3,000 each were approved for Dr Ajay Thapar (Gaining new insights into the quality of life of people with epilepsy); Ms Janine Winterbottom (Women with epilepsy preparing for pregnancy: a qualitative analysis of risk communication and perception) and Mrs Mel Goodwin (Doctor versus epilepsy specialist nurse opinion at first seizure presentation: does a specialist nurse bring different qualities to the interview).

Council heard that its Corporate Governance Committee had held its first meeting and had initiated a review of the Association’s Memorandum and Articles of Association. This will be ongoing during 2005.

Mrs Figg, Mr Harnor, Mrs Sharlot, Dr Wright and Ms Harper were all identified as being the longest serving Council Members in office since their last election or re-election and therefore liable to step down at the next Association AGM in June 2005. All five, being eligible, may stand for re-election.

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