Council of Management

The Council of Management is the governing body that constantly improves the way we work at Epilepsy Action.

Council members represent the views of people affected by epilepsy when it comes to creating new policies, priorities and strategies and much more.

They make important decisions and share ideas about all aspects of our work. They are there to make sure that Epilepsy Action stays on track and achieves its goals.

 

Council member Jane Riley

How we are run

Epilepsy Action is a charity made up of individual members.

Every year the members elect people to be the trustees of the charity. The trustees are the people who look after the charity.

They decide its long term plans and watch over what the charity does on behalf of all the members. The trustees are very important to the charity.

The name we give to all the trustees together is the ‘Council of Management’, or just ‘Council’ for short.

The name we give to individual trustees is ‘Council member’. Since the Association is a limited company, Council members are also company directors.

Read our 2023 trustee report

The technical stuff

British Epilepsy Association is a charity registered in England and Wales (No. 234343) and an incorporated company registered in England (No. 797997). The Council of Management (the Council) is the governing body of the Association and its members are the trustees of the charity and the directors of the company.

The Council is responsible for overseeing the sound management of the whole Association and for ensuring the policies and strategy are implemented by the staff through the Chief Executive.

It is made up of up to 16 members who have been elected by the membership at the Annual General Meeting, who in turn elect a Chair, Vice Chair and Honorary Treasurer every year. Being led by elected members means we have an open and democratic tradition, with a governing body that includes people with epilepsy, carers, professionals and others interested in the work we do.

Council members are volunteers and they have confirmed that they do not have, and have not had, any beneficial interest in any contract with the Association. The Register of Council Members’ interests is available on request from the Leeds head office.

The Corporate Governance Committee has up to six members. It informs and advises Council on matters relating to the good governance of the charity and makes recommendations on how the systems and operating practices of the Council and the charity can be improved to minimise risk, reflect current statutory and regulatory requirements and to meet standards of best practice.

The Finance and Strategic Policy Committee has up to eight members. It informs and advises Council on matters relating to financial and resource management strategy and policy formulation and the development of the charity’s operational activities.

The Standing Committee is usually made up of the Chair, the Vice Chair and the Honorary Treasurer. It provides an additional opportunity for the Chief Executive and the Officers to discuss business management and development issues and to deal with any urgent business that requires the immediate attention of the charity’s trustees.

 For more details about becoming a Council Member see the section below on joining the Council of Management.

Our current council members

  • Chair: Jane Riley

    My passion to improve the lives of people with epilepsy was born when my son, Matthew developed complex partial seizures nine years ago, aged thirteen. The complex, uncontrolled nature of his seizures during this time has changed his life and that of our family, forever.

    However, Matthew’s seizures rarely prevent him leading as near normal a life as possible, but this can be challenging. The family has always supported him throughout and his independence is of utmost importance to us. As a parent, to watch him undertake risk is the hardest job of all, but I know how important this is to Matthew’s self-respect and esteem.

    We had very little support in those early difficult days and turned to the Epilepsy Action website and helpline. We found the charity invaluable and now using my own experiences I want to help others in similar situations by joining the Council of Management.

    I have a strong clinical, operational and senior managerial background in the NHS stretching over thirty years. I strongly believe in the concept of improving outcomes for people with epilepsy and the inequitable variation of care. I offer significant experience in transformational service redesign, commissioning of services for people with long term conditions and can demonstrate evidence of tough decision-making.

    I have successfully engaged and lead senior management and clinicians on many complex issues and have developed excellent motivational, leadership and negotiation skills. I have also won an award for my work on self-care and have made a number of national presentations.

    I am an Accredited Volunteer and have also undertaken regular fundraising activities.  I firmly believe in Epilepsy Action’s aims, values and priorities and am committed to the development and delivery of high quality, highly performing and cost effective services for people with epilepsy and their families.

    Email Jane at: chair@epilepsy.org.uk

  • Vice-Chair: Dr Peter Clough

    I have broad experience in epilepsy starting at the David Lewis Centre for Epilepsy in 1996. As Associate Specialist in Epilepsy I was the clinical lead of the busy adult assessment unit.

    At the same time I also worked for David Lewis’s community arm, being clinically responsible for managing the care of those with complex epilepsies. I was also involved in weekly epilepsy clinics in East Cheshire and Greater Manchester.

    When the David Lewis’ assessment unit closed and my role changed I moved to work for the Greater Manchester Centre for Clinical Neurosciences.

    Here I continued my community and hospital based epilepsy clinics at Salford Royal Hospital; Withington Community Hospital and in Macclesfield. I also became an active member of the Greater Manchester Centre for Clinical Neurosciences’ epilepsy surgery team.

    At David Lewis I developed an interest in managing epilepsy in people with various degrees of learning disability. Working as part of a multidisciplinary team, I have continued this interest in my current post. This can be extremely challenging but often very rewarding.

    I work closely with GP commissioners, hospital consultants and epilepsy specialist nurses and managers in developing epilepsy services. This includes a Suspected First Seizure Rapid Access Service in Macclesfield and a Transition Clinic for patients moving from paediatric to adult services in Salford. I am currently working with managers to establish a similar Transition Clinic in East Cheshire.

    I see my role as part of the team, working collaboratively with people with epilepsy and their families and carers to improve their quality of life. I believe it’s important to take a holistic approach that addresses social issues, like employment and benefits entitlement, as well as the physical, psychological and psychiatric issues that affect many people with epilepsy.

    I am a professional member of Epilepsy Action.

    I am not currently active in research but I have previously published on: the misdiagnosis of epilepsy; the use of midazolam as epilepsy “rescue” medication and reversible Parkinsonism in patients exposed to valproate.

  • Honorary Treasurer: Nicholas Hutton

    I have been a member of Epilepsy Action for many years. Our younger daughter developed epilepsy when she was 7. We were fortunate to live in London and to have access to skilled tertiary care, but it was nevertheless a struggle for us to help her obtain treatment, and deal with the day-to-day issues of living and growing up with epilepsy. The side-effects of medication, and the cognitive deficit caused by the condition, made her education challenging.

    It must be so much more difficult for families who live in areas not so well-served by epilepsy professionals. We were lucky: although our daughter’s ever-changing medication never resolved her seizures, she was eventually offered surgery to remove the focus of her seizures. The support and profile which Epilepsy Action provided were very helpful to us at a time when we needed it.

    In March 2021, I retired after 40 years as a corporate and commercial solicitor. I now have much more time to undertake activities that interest me and are of benefit to the community. As part of my work, I provided advice over many years pro bono to a range of charities, mainly focusing on education and disabilities.

    I am interested in the treatment of children with epilepsy and in their transition to adult care. Although I have no scientific background, I believe that scientific developments to improve the lives of those with epilepsy should be fully supported and realised with new anti-epileptic and cannabis-based medication. I would like to improve awareness and understanding of epilepsy, not only in the work place, and to assist in removing barriers to employment.

  • Deirdre Black

    In 2023 I was elected to Council, having been a member for 17 years since a close relative was diagnosed with epilepsy.

    It has been a great privilege being a trustee, spending time with Council colleagues and employees, and learning about what that goes into making Epilepsy Action so impactful in its support for, and advocacy on behalf of, people with epilepsy and their families and carers.

    As a senior manager at the Royal Society of Chemistry I have had responsibility variously for science policy and campaigns, our scientific programmes and member communities, as well as international engagement.

    My role includes understanding trends in science and society, and continually using these to identify strategic opportunities and priorities for the charity.

    I enjoy working collaboratively with people who have expertise and experiences different to my own.  I care deeply about sustainability in the broad sense – including environment, equality and health – and recently led the development of our first holistic sustainability strategy.

    Before joining the RSC, I spent fifteen years as an academic physics researcher and educator in the USA and UK, volunteering also for outreach and mentoring programmes.

    I think there is a huge opportunity for sharing of ideas and learnings across the charity sector and hope that my combined personal and professional experience enable me to make useful contributions to the Council.

     

  • Jayne Burton

    I was diagnosed with epilepsy in 1997. In 1999 I had surgery to treat my epilepsy. This had made a vast improvement to my condition. It was after this that I became more interested in the world of epilepsy. In 2002 I was medically retired from the National Health Service because of my condition.

    I worked as a nurse on a paediatric intensive care unit. I had problems with my short term memory and I had started to have simple partial seizures again. So along with support from my manager I made the decision to take retirement. This made me realise it is important that people who live with conditions like epilepsy “stand up and be counted”. Although I had a supportive manager, Epilepsy Action’s helpline also supported me.

    I became an accredited volunteer for Epilepsy Action raising awareness and supporting people with epilepsy. I joined the Council of Management in 2006. It was then I learnt just how valuable the organisation is and that the people who live with epilepsy can make a difference to the way we are represented. One way we can do this is by not letting epilepsy hold us back. I am involved in my local community and sing in a church choir and a barbershop chorus. Doing these activities helps me accept the issues that come along with my epilepsy.

    Raising awareness of epilepsy has to be a top priority for Epilepsy Action and I take it as a privilege to be able to represent the many people who live with epilepsy.

  • Richard Chapman

    I was diagnosed as having epilepsy in my early teens and first became aware of the Association when I was looking for help and advice myself. I subsequently became involved with its work playing an active role in the Branch network for over 20 years and training as an accredited volunteer.

    I have been a member of the Council of Management since 1987 and during that period have been Honorary Treasurer and twice Chair of Council. The Association has changed greatly over that period both in size, influence and prestige.

    I strongly support the Association’s role in pressing for a better deal for people with epilepsy in the fields of education, health and welfare provision from a heartfelt desire to help breakdown some of the barriers that I faced when I was younger. I believe that the most important thing we do is provide a free source of information and advice for people with the condition and those who are newly diagnosed.

    I am now semi-retired having been employed by the Department for Environment, Food and Rural Affairs and its predecessors for over 25 years on a range of conservation policy issues, including representing UK interests internationally and within the EU. I am currently an elected member of Narborough Parish Council.

    My wife also has epilepsy. We have one grown up son.

  • Avril Coelho

    Having had Epilepsy for over three decades, as a symptom of a very rare condition, I have overcome various barriers developing a strong understanding of the kind of barriers those with epilepsy and their families face and of the ever important need to both raise epilepsy impact awareness and the necessity for all organisations and employers to make reasonable adjustments for those who have epilepsy and understand why they must.

    I have immense passion for bringing positive change to the lives of those who are affected by epilepsy.

    I bring a lifetime of lived experiences including being one of the first people to use the DDA95 to challenge unfair dismissal due to epilepsy. I learnt the role of the SENCO when Secondary teacher training. I have prior board level experience as a former School Community Governor and former Chair of Trustees of registered Charities. I have learnt scrutiny and how to be an effective critical friend.
    I have a keen interest how epilepsy affects women during their menstrual cycle, family planning, the menopause and the decisions women need to make during these life stages and ensuring they are fully informed of their options and both herbal and medication solutions and contraindications.

    I campaign to drive change for work place inclusion for those with epilepsy and other disabilities. I have gained an understanding of risk assessments and Equality Impact Needs Assessments and studied the Equality Act 2010 as part of a work place NVQ Level 3 and have drawn on this knowledge subsequently. The COVID-19 pandemic has illustrated how disabled people with reasonable adjustments can work remotely in certain professions and employers need this reinforced when recruiting.

    I bring to the Council experience of scrutiny as a London Borough Councillor having had over 2.5 years experience on both Regulatory and Audit, Standards and Statutory Accounts Committees and a working group on policy and code of conduct. I also bring product knowledge of what natural supplements aren’t safe for those who have epilepsy and what can help different symptoms, two years collegiate non partisan Safer Neighbourhood’s Board & Safeguarding Children’s Board experience in addition to Chair of Trustees experience where high level negotiation was required and fundraising experiences including abseiling, stair climbing London buildings, distance swimming in layers of clothing outdoors and Sky diving. I try to be a role model for my niece and second cousins so they know that having a disability doesn’t prevent people living as normal and full a life as possible.

    I hope to increase Council expertise to benefit Epilepsy Action members and improve the functioning of Epilepsy Action via input into the Council Working Practices Review Group with a fresh perspective and that of an intersectional member.

  • Joanne Greer

    Hello,

    I am Joanne Greer and Mummy to 3 beautiful Daughters and wife to Gareth. I live in Magherafelt which is found in Mid Ulster, Northern Ireland.

    I have lived with epilepsy for most of my life, with my seizures starting from when I was aged 8, these seizures proved difficult to diagnose. It got worse while studying in Leeds in 1993 but with support from Epilepsy Action I successfully completed my degree.

    After many frustrating years of misdiagnosis, I was diagnosed with Complex Partial Epilepsy caused by Hippocampal Sclerosis in 2014. I have since had a successful ‘Interior right resection’ in UCHL in May 2019.

    Epilepsy did put pay to my chosen career path back in 1993. As living in Northern Ireland and training to be an Accountant, a car is essential and due to epilepsy, I was unable to take my driving test. It didn’t stop me living and it gave me the space to rethink, what did I really want to do with my life.

    The doors that epilepsy closed career wise, presented me with the opportunity to volunteer with various organisations. I volunteered at ‘Mid Ulster Contact Centre’ where estranged parents could meet their children in a supervised safe place. It also enabled me to become an accredited volunteer with CAB where I did general advise work with a leaning towards debt management.

    As a Mummy with Epilepsy, I have had to navigate my way through pregnancy, the challenges of breast feeding, caring for a newborn whilst dealing with the determination of a toddler and preschooler, to currently dealing with teenagers while having frequent seizures and Brain Surgery. I understand the difficulties parents with Epilepsy face on a daily basis.

    As a result of having Epilepsy I have to develop skills such being a great ‘rescheduler’ and forward planner constantly looking at situations from the perspective of someone who is unsure of what the next moment in time will bring. I know and understand the individual needs that someone with Epilepsy has and how they differ from individual to individual.

    To take my mind off brain surgery I got involved in Magherafelt Womans Group, which helps meet the needs of the Rural Women in the area. Helping women achieve their personal goals and realise that with support and encouragement they can over come any barriers that they encounter during their life’s journey; very much like how Epilepsy Action has helped me over the years.

    Now it is my turn to pay it forward.

  • Cameron Hill

    Biography to come

  • Diane Hockley

    I have worked in the Disability arena for most of my life. I have a range of skills and experience to bring to the role if appointed these include, disability, campaigning, fundraising, events, governance, mediation and advocacy, equal opportunities and diversity.

    My professional paid background includes working as a Civil Servant as a Disability Employment Adviser in a Jobcentre, which involved giving help to people with a range of disabilities including Epilepsy, working in a team to set up the Disability Rights Commission, undertaking other Disability project work, including equal opportunities, and producing a range of publications for professionals. Since leaving the Civil Service I have commissioned services in local government, and worked for a range of charities undertaking campaigning, diversity and disability awareness work.

    On an unpaid basis, I was the Co-Chair of Buckinghamshire Alliance of Neurological Organisations a small organisation in Buckinghamshire until 2016 whose remit was to raise awareness of neurological conditions including Epilepsy, and influence health and social care commissioners in order that best services existed. Currently I represent service users and carers on a Neurological Network in Buckinghamshire, my remit here is to campaign for better services and to represent service users views and concerns. Elsewhere I am involved with other advisory work

  • Sarah Lawson

    I was diagnosed with epilepsy at the age of 14, some 46 years ago. I have been very lucky with my epilepsy that it has not really disrupted my life. I hope that being a council member I can help assist people to lead a good life whilst living with their epilepsy.

    I have been a chef and worked in the catering trade all my adult life, a career that I love and continue to work in.

    My husband and I moved to Ilkley 33 years ago from London, with our two young sons. Whilst continuing to work, I soon became involved in local charity working, becoming a member of the management Council of the Coronation Hospital, School Governor, chairman of the local branch of the National Childbirth Trust, and being a founding member of a fundraising group for new play equipment for the local park. All this experience lead me to become a Councillor on Bradford Council, which I did for three years, gaining experience in many different fields.

    Having spent many years in business and working as a local councillor, I have skills and experience in financial management, human resources, fundraising and working within teams.

  • June Massey

    My son’s epilepsy was diagnosed 36 years ago when he was age three. Six years later I found Epilepsy Action and have been actively involved ever since, including starting a Branch in 1993.

    I have been grateful to members for the opportunity to work as a member of Council of the Council of Management since 1998 and I am proud to have held the posts of Chair, Vice Chair and Honorary Treasurer during my terms of office.

    While serving as a Council member, I very much enjoy seeing the brilliant work of Epilepsy Action staff and my fellow Council members and volunteers. It has been a privilege to represent Epilepsy Action and to play an active and enthusiastic role in the continuing growth of the association.

    My work as a Specific Learning Difficulties Consultant means that I have the opportunity to help education providers and employers to meet the needs of individuals with a range of conditions, including epilepsy. I deliver training, in my professional role and also in a voluntary capacity as an Epilepsy Action Accredited Volunteer, in epilepsy awareness and the educational implications of epilepsy, to educationalists, employers, voluntary groups, parents and young people.

  • Tom McLaughlan

    Epilepsy interrupts your life when you’re least expecting it. In my case I went 20 years or so before getting my rude reminder – a breakthrough seizure whilst driving. Two years later in 2019 I had my first and hopefully last experience of status epilepticus. The bout on a ventilator in ICU spurred me to expedite my decision to retire early – I’d been Managing Director of European Government Relations at a global management consultancy – and instead use my skills to support charities where I have a particular interest.

    One of the things I love about Epilepsy Action is the way it can appeal to the widest array of people. In my case, it was the place I turned to after my spell in intensive care. Whoever took my calls related to me in a truly caring, considered and compassionate way, helping me understand the new situation I found myself in. This direct interface with people – whether they’re affected directly or indirectly by epilepsy – is quite simply priceless.

    Living with epilepsy is hard for everybody and so whether they’re the cared for or the carer they deserve the best support as well as ready access to high quality treatment. Epilepsy Action helps to bring this about and I want to use my time on Council to support the delivery of this goal.

    I have been very fortunate in life and now it’s time for me to give back. For 33 years my ‘day job’ was about positioning people and organisations with key decision makers; shaping public policy at a national and international level; helping income generation from governments; and managing risks so that they don’t become a crisis.

    In addition to Epilepsy Action, I am a trustee at Arthritis Action and of The Orpheus Centre Trust, an independent specialist college for young disabled adults with a passion for the performing arts. I also work as a crisis volunteer at Shout, the UK’s first free, confidential, 24/7 text support service.

    I’m married to Barbara, my rock, and we have two wonderful adult sons. I love photography and walking in the woods with my rescue pointers, Flo and Theo, who are kind enough to let me think I’m the pack leader!

  • Katie Stevens

    I had my first seizure in my early 20’s, leading to many years of anxiety for myself and my family. I experienced many issues and fear due to a lack of awareness and understanding of epilepsy in the community as a whole. In 2018, I underwent temporal lobe surgery, and I am now privileged to be seizure free. My time is now devoted to improving the lives of others, in particular, a commitment to ensuring people with epilepsy (and families) can be their true selves.

    For many years I have been a member of the Association and have benefited extensively from its invaluable support. Without Association’s advice and guidance my family and I would have struggled to get through such a difficult time. I strongly support the Association’s role and I am therefore delighted to have been elected to the Council of Management.

    I am a Chartered Accountant and have worked in over 100 countries, holding senior finance roles within the public and private sector, including Network Rail, Howdens Plc, Ernst & Young and Arthur Andersen. I am also passionate about inclusivity, having been Chair of “CanDo”, Network Rail’s Disability Employee Network.

    My husband and I ‘retired’ early so we could both fully enjoy time together in beautiful Northumberland and pursue our desires to support the most vulnerable in our communities. I currently hold a number of following voluntary roles including Trustee at Young Epilepsy; Independent Member at Scope UK Charity; Trustee for Scope Pension Scheme; Trustee at Ascent Academies’ Trust;  Member at Ethos Academy Trust: Member; and Trustee for Smart Multi-Academy Trust.

    I am also Executive Director of Finance and Corporate Services for the Chartered Institute of Environmental Health (CIEH) – leading CIEH’s Finance, HR, Facilities and Conference teams.

    I was appointed as Trustee for River Tees Multi Academy Trust on 12th July.

  • Stephen Timewell

    Having been a grand mal epileptic for over 50 years and having overcome many of the adversities associated with epilepsy I have been keen to use my positive experiences to help others with the condition. Recently I have written a number of articles for Epilepsy Action about my various experiences that are available on the website in the column The Man with the Memoirs, but I feel I have much more to offer.

    Being fortunate to have received an excellent education in Australia along with a tertiary degree in the US, I have spent almost 40 years of my professional career in business, banking and global financial journalism, becoming Editor and now Editor Emeritus of The Banker magazine, part of the Financial Times Group. Over the last 25 years I have written extensively about countries across the globe and also had seizures in many countries and different environments, from hotels to planes crossing the Pacific.

    Although very difficult at times, I have been able to combine my family and career with my epilepsy and I am keen to apply my broad range of experience to help others overcome their difficulties and build successful and sustainable lives.

    While my exposure to Epilepsy Action has, until now, been limited to my membership and writing articles on its website, I believe, as I am now retired, there is an opportunity to use my business and editorial background, as well as my personal experience with epilepsy, for the benefit of the organisation and its members.

    I believe I have a unique exposure to both the business world and the condition itself and hope that through this combination I can provide a useful contribution to Epilepsy Action as an elected Council member.

  • Ian Walker

    My first experience of epilepsy came when, in 1995, my eldest son was diagnosed following a series of prolonged/multiple seizure events.

    My interest grew further when, in 1999, my daughter experienced post-stroke seizures and, in 2005, when she was diagnosed with epilepsy. More recently, in 2009, my 76 year old father was diagnosed with epilepsy following a stroke.

    I first came across Epilepsy Action in 1995 when, at that time, what we needed most was information. Epilepsy Action came to the rescue. I became involved in 2001, at a sponsored walk organised by a local branch in North Wales, and between 2002 and 2006 was Chair of that Branch. I have seen a lot of changes since 2002, and have played a small part in helping some of them come to fruition through awareness raising and campaigning with politicians for better services in Wales. I am a member of Epilepsy Action’s National Advisory Council for Wales.

    By profession I am an IT consultant, specialising in business systems, data security, forensic analysis of data and data recovery. I have worked in the transport and construction industries and have been in the IT profession for more than 30 years. Today I run my own IT consultancy business serving small business and not-for-profit organisations.

    I have been a Member of the Council of Management since 2009.

Join Epilepsy Action’s Council of Management

Are you passionate about improving the lives of people with epilepsy?

Do you have skills and experience to share with us and bring about meaningful change?

You could be just the person Epilepsy Action’s Council of Management is looking for.

Find out more

Updates from council meetings

  • 14 May 2024

    The Council of Management met at New Anstey House on 14 May with six members attending by remote video connection.

    This was the last Council meeting before the Council elections take place at the Annual General Meeting on 18 June. Members used this opportunity to express thanks to Jayne Burton and Avril Coelho who are not seeking re-election to the Council. Jayne has served on Council for 12 years and previously served for two years between 2006 and 2008. Avril has served on Council from 2021. Both were warmly thanked for their dedication and commitment to Council and to the work of the charity.

    During the meeting the Council made the following decisions.

    • Council received and approved the annual reports of each of its Committees.
    • The terms of reference of every Committee were reviewed, slightly amended and approved. All Committees were confirmed to continue for a further 12 months.
    • The terms of reference of the Council’s advisory panels were also reviewed and slightly amended and the panels were confirmed to continue.
    • Council member Ian Walker was elected to be Council’s safeguarding lead.
    • Reports were received and considered on the charity’s financial performance and position; the progress being made with implementing the new strategy, the work being carried out on the constitution and governance review and the work being done to review and refresh the charity’s branding.

    The next meeting of the Council of Management will be on 16 July 2024.

  • 9 April 2024

    At a meeting of the Council of Management held on 9 April, the following decisions were made.

    • Approval of the 2023 trustees’ report and 2023 year end accounts.
    • Approval of the 2023 Audit Findings Report and agreement to sign the Auditor’s letter of representation.
    • Approval of a resolution to nominate Baroness Ford for re-election as President of the Association at the Annual General Meeting on 18 June 2024.
    • Approval of a resolution to nominate Saffery LLP as auditor to the Association at the Annual General Meeting on 18 June 2024.
    • Approval of a resolution to close the register of Association members from 19 May to 18 June 2024 for the duration of the Council elections.
    • Appointment of Rachel Rankmore as a member of the charity’s National Advisory Council for Wales.
    • Approval of a new more regular reporting system to Council on EDI.
    • Approval of the Fundraising Delivery and Monitoring Plan 2024.
    • Approval of a role description for a Council safeguarding lead.
    • Completion of the quarterly review of the corporate risk register.
    • Received and noted a report from the Officers of Council on the 2024 Council members’ personal appraisal.
    • Decision to hold a Council members’ away day on 7 October 2024.

    The next meeting of the Council of Management will be on 14 May 2024.

  • 6 February 2024

    At a meeting of the Council of Management held on 6 February, the following decisions were made.

    • Some structure and a framework were agreed for the review of the charity’s constitution and governance.
    • Approval of a new environmental policy for the charity.
    • Initiation of a review of the providers of the charity’s investment management service and the charity’s audit service.
    • Approval of a total return approach to the charity’s investments.
    • Appointment of Dr Sheila Sheppey as a member of the charity’s National Advisory Council for Wales.
    • Appointment of Yasmin Ajanni and Ajeola Akanni as members of the charity’s Ethnic Communities Advisory Panel.
    • Approval of the following statement about the principles of good governance:

    ‘The Council of Management has adopted the Charity Governance Code as a tool for continuous improvement towards the highest standards in governance. The principles established by the Code provide the aspirational benchmark for Council appraisal.’

    • Appointment of June Massey to the vacancy on the Corporate Governance committee
    • Council had a detailed discussion about safeguarding and made the following decisions:
    • Council members will receive annual awareness training on safeguarding.
    • Council will review the charity’s policy on safeguarding at least annually.
    • Council will review operational safeguarding overview reports on a regular basis.
    • Council will appoint a lead trustee on safeguarding.
    • All Council members will be required to pass a standard DBS check.

    The next meeting of the Council of Management will be on 9 April 2024.

  • 5 December 2023

    At a meeting of the Council of Management held by remote video conference on 5 December, the following decisions were made.

    • A revenue budget and business plan for the charity were approved for 2024.
    • Council reviewed, updated and renewed its scheme of delegation. This is the record of how the Council delegates authority on some matters to the Chief
    • Executive to make decisions and manage day to day operational issues.
    • It reviewed the charity’s corporate risk register and ensured adequate measures are in place to manage those risks.
    • the Epilepsy Nurses Association (ESNA) was approved.
    • It was decided to close at the end of 2023 the following Association advisory panels because their functions are now provided by alternative means. The panels to close are the Health and Clinical Advisory Panel, the Scientific Awards Panel, the Women’s Advisory Panel and the Research Advisory Panel.
    • Council has begun framing the remit of a comprehensive constitutional and governance review as part of the charity’s new strategic plan.
    • Council noted the retirement of Judith Davies, PA and Executive Assistant, at the end of the year and thanked her for her 20 years of service to the charity and for supporting the Council and its members so well throughout that time.

    The next meeting of the Council of Management will be on 6 February 2024.

  • 3 October 2023

    The Council of Management met by remote video conference on 3 October.

    The main item of business was consideration of the draft new long term strategic plan for the charity. This was the culmination of months of review, consultation, analysis and modelling. The strategy has now been finalised and approved by the Council and a comprehensive communication plan will soon begin to advise everyone about the charity’s future.

    In other business, Domini Wood was appointed as the latest member of the charity’s ethnic communities advisory panel. Council also reviewed and were content with the charity’s current financial position and the progress being made with this year’s business plan. It also confirmed a set of guidance for staff for the preparation of the 2024 revenue budget and business plan.

    Finally, Council approved recommendations submitted by its Finance and Strategic Policy committee to revise and update the charity’s corporate risk register and its policy and process for strategic risk management.

    The next meeting of the Council is scheduled to be held on 5 December 2023.

  • 18 July 2023

    The Council of Management met at New Anstey House on 18 July. This was the first meeting of the Council after the Association’s Annual General Meeting held in June. Members were pleased to welcome two new colleagues who were elected this year – Deirdre Black and Cameron Hill.

    Jane Riley was elected as the Chair of Council. Peter Clough was elected as the Vice Chair of Council. Nicholas Hutton was elected as the Association’s Honorary Treasurer.

    The following people were elected to the Corporate Governance committee: Jayne Burton, Richard Chapman, Diane Hockley, Sarah Lawson, Tom McLaughlan and Ian Walker. Avril Coelho and Richard Chapman were appointed to the staff appeals panel.

    The following people were elected to the Finance and Strategic Policy committee: Richard Chapman, Joanne Greer, Diane Hockley, June Massey and Tom McLaughlan. Jane Riley, Peter Clough and Nicholas Hutton are all ex-officio members of the committee as Officers of Council.

    Annual reports were received from Council’s EDI champion and its champion for research. Katie Stevens was re-appointed to be Council’s EDI champion for the next 12 months. Peter Clough was re-appointed as Council’s champion for research. Abi Babatunde was appointed as the latest member of the charity’s ethnic communities advisory panel and five members of the charity’s Research Advisory Panel were reappointed for a 12 month period.

    In other business, Council reviewed and were content with the charity’s financial position and progress being made with this year’s business plan. It also completed its quarterly review of the top ten risks on the corporate risk register. Finally, Council approved a new bye-law and a set of recommendations that will facilitate online remote attendance at the charity’s Annual General Meeting in 2024.

    The next meeting of the Council is scheduled to be held on 3 October 2023.

  • Annual General Meeting, 13 June 2023

    Ballot results

    Summary of response

    Electorate:  7,780  (Percentage 100)
    Valid proxies returned: 237 (3.05%)
    Invalid proxies returned: 7 (0.09%)
    Total proxies returned: 244 (3.14%)
    Members voting at AGM: (0%)
    Total response: 244 (3.14%)

    Election of members of the Council of Management

    Ian Walker: Votes received 203 (Percentage 18.68) – Elected
    Richard Chapman: Votes received 196 (18.03%) – Elected
    Cameron Hill: Votes received 178 (16.38%) – Elected
    Deirdre Black: Votes received 160 (14.72%) – Elected
    Sarah Lawson: Votes received 124 (11.41%) – Elected

    Jim Berrington: Votes received 114 (10.49%)  – Not elected
    Christopher Bruce: Votes received 112 (10.30) – Not elected

    Total votes received: 1087

    Confirmation of appointment of Vice Presidents

    Karen Armstrong:
    Votes YES to confirm 192 (86.49%)
    Votes NO 30 (13.51%)

    Paul Maynard MP:
    Votes YES to confirm 196 (86.73%)
    Votes NO 30 (13.27%)

    Prof. Ray Tallis:
    Votes YES to confirm 203 (90.63%)
    Votes NO 21 (9.38%)

    Result of Resolution I

    To re-appoint RSM UK Audit LLP as auditors
    Number for: 207
    Percentage for: 94.95
    Number against: 11
    Percentage against: 5.05

     

  • 16 May 2023

    The Council of Management met at New Anstey House on 16 May with four members attending by remote video connection.

    This was the last Council meeting before the Council elections take place at the Annual General Meeting on 13 June. Members used this opportunity to express thanks to Mike Harnor and Gavin Barlow who are not seeking re-election to the Council.

    Gavin Barlow has served on Council for 12 years and previously ran the charity’s Sapphire Nurse programme.

    Mike Harnor served on Council for 38 consecutive years, including periods as Chair and Vice Chair, and is Council’s longest serving member having been first elected in 1985. Both will be greatly missed for their deep commitment, wisdom and passion.

    Council made the following decisions.

    • An investment in the charity’s IT systems and infrastructure was approved.
    • Council received and approved the annual reports of each of its Committees.
    • The terms of reference of every Committee were reviewed, amended and approved. All Committees were confirmed to continue for a further 12 months.
    • Mubarak Ahmed and Fathiya Bahdon were appointed as members of the Ethnic Communities advisory panel.

    The next meeting of the Council of Management will be on 18 July 2023.

  • 7 Feb 2023

    At a meeting of the Council of Management held at New Anstey House on 7 February, the following outcomes and decisions were made.

    • Five people were appointed to a new panel set up to advise the charity on matters relating to young people and epilepsy.
    • Five other people were appointed to another new panel set up to advise the charity on matters relating to epilepsy and different ethnic communities.
    • Reports were received on progress with the charity’s review of its strategy. Additional meetings of Council were agreed for later in the year to give Council members sufficient time to reflect on the results of consultations.
    • Council’s Finance and Strategic Policy Committee was tasked with reviewing the charity’s corporate risk policy, procedure and risk register and to report back with any recommendations for improvement.
    • Council’s Corporate Governance Committee was tasked with reflecting on the two new advisory panels to ensure they have been soundly established.
    • Council heard details of the new Epilepsy Stars award programme that will launch in March.

    The next meeting of the Council of Management will be on 4 April 2023.

  • 6 December 2022

    At a meeting of the Council of Management held at New Anstey House on 6 December, the following decisions were made.

    A revenue budget and business plan for the charity were approved for 2023.

    Council reviewed and renewed the charity’s National Advisory Councils for Wales and Northern Ireland.

    It reviewed, updated and renewed its scheme of delegation. This is the record of how the Council delegates authority on some matters to the Chief Executive to make decisions and manage day to day operational issues.

    It reviewed and updated the role description for Council’s EDI champion. EDI stands for Equality, Diversity and Inclusion.

    It appointed six people to a new panel set up to advise the charity on matters relating to young people and epilepsy.

    It reviewed the charity’s corporate risk register and ensured adequate measures are in place to manage those risks.

    It reappointed Karen Armstrong, Paul Maynard MP and Professor Ray Tallis as Vice Presidents of the Association when their current term of office expires at the date of the AGM in June 2023.

    The next meeting of the Council of Management will be on 7 February 2023.

  • 4 October 2022

    The Council of Management met by remote video conference on 4 October.

    Members approved a set of guidance for staff in the preparation of the 2023 revenue budget. This continued the same principles that have successfully guided the charity’s finances through the pandemic months.

    Council approved the appointment of Chloe Noot as a new member of the charity’s National Advisory Council for Wales / Cyngor Ymgynghorol Cenedlaethol Cymru (CYC Cymru).

    Professor Yuwu Jiang was confirmed in his appointment as a new social media editor for the charity’s scientific journal Seizure.

    In other business, members reviewed the charity’s current financial position and progress being made with this year’s business plan. Every quarter the Council looks at the top ten risks on the corporate risk register and selects one for more in depth analysis. On this occasion members looked at membership and assured themselves that proportionate measures were in place to manage the risks. Reports were received on progress being made with the charity’s CRM database project and the review of the charity’s strategic plan.

    The next meeting of the Council is scheduled to be held on 6 December 2022.

  • 12 July 2022

    The Council of Management met at New Anstey House on 12 July. This was the first meeting of the Council after the Association’s Annual General Meeting held on 14 June. Members were pleased to welcome two new colleagues who were elected this year – Tom McLaughlan and Katie Stevens.

    Jane Riley was elected as the new Chair of Council. Peter Clough was elected as the new Vice Chair of Council. Nicholas Hutton was elected as the Association’s new Honorary Treasurer.

    The following people were elected to the Corporate Governance committee: Jayne Burton, Diane Hockley, Sarah Lawson, Tom McLaughlan, Katie Stevens and Ian Walker.

    The following people were elected to the Finance and Strategic Policy committee: Richard Chapman Mike Harnor, Sarah Lawson, June Massey and Katie Stevens. Jane Riley, Peter Clough and Nicholas Hutton are all ex-officio members of the committee as Officers of Council.

    Annual reports were received from Council’s diversity champion and its champion for research. Katie Stevens was appointed to be Council’s diversity champion for the next 12 months. Peter Clough was re-appointed as Council’s champion for research.

    In other business, Council reviewed the charity’s financial position and progress being made with this year’s business plan. Members were content that objectives were on target to be delivered. Every quarter the Council looks at the top ten risks on the corporate risk register and selects one for more in depth analysis. On this occasion the turbulent macro economic conditions were looked at. Members assured themselves that proportionate measures were in place to manage this risk.

    The next meeting of the Council is scheduled to be held on 4 October 2022.

  • 10 May 2022

    The last time the Council of Management met together in the same room was in December 2019. After a break of nearly two and a half years of entirely remote meetings, the Council met together again at the charity’s offices at New Anstey House on 10 May. Five members of Council attended by remote video connection.

    This was the last Council meeting before the Council elections take place at the Annual General Meeting on 14 June. Members used this opportunity to express thanks to the three Officers – Richard Chapman, Chair; Jane Riley, Vice Chair and June Massey, Honorary Treasurer – who will all complete their three year terms of office in July. They were applauded for their outstanding leadership and support of Council and the charity during the unprecedented turbulent times of the Covid pandemic.

    Members also noted that this was Beryl Sharlot’s last Council meeting. Beryl has decided to retire and is not seeking re-election at the AGM in June. Members noted that she has served continuously on Council for more than 30 years and at various times has held every Council Office. Her experience and wisdom as well as her friendly support and deep commitment will be greatly missed.

    Council made the following decisions.

      • The approval of a series of recommendations to enhance the effectiveness of Council’s working practices including wider use of technology to facilitate meetings and decision making.
      • Council received and approved the annual reports of each of its Committees.
      • The terms of reference of every Committee was reviewed, amended and approved. All Committees were confirmed to continue for a further 12 months.
      • The following people were reappointed for a 12 month term as members of the Scientific Awards Panel:
        • Linda Mayhew
        • Leone Ridsdale
        • Emily Holmes
        • Andrew Trevelyan
        • Melissa Maguire
        • Fiona McKinnon
        • Prof. Michael Johnson
        • Stephanie Kilinc
        • Dr Khalid Hamandi
        • Rajiv Mohanraj
      • The following people were all re-appointed as members of Epilepsy Action’s National Advisory Council for Wales.
        • Louise Capeling
        • Michael Dix-Williams
        • Dr Frances Gibbon
        • Malissa Pierri
        • Craig Williams
      • Council approved a process and timetable for the review of the charity’s current strategic plan.
      • The next meeting of the Council of Management will be on 12 July 2022. It was agreed that this will again be held in person with the option of remote attendance for those who cannot attend at New Anstey House.
  • 12 April 2022

    At a meeting of the Council of Management held by remote video conference on 12 April, the following decisions were made.

        • Approval of the Fundraising delivery and monitoring plan for 2022.
        • Council received and approved the 2021 Trustees’ annual report and year end accounts.
        • The 2021 Year End Audit Findings Report was received and noted.
        • Council agreed to sign the Letter of representation to RSM UK Audit LLP
        • Joanne Greer, Kerry Watkinson and Gillian Dourish were appointed as new members of the National Advisory Council for Northern Ireland.
        • Dr Abigail Swift was appointed as a new member of the National Advisory Council for Wales.
        • Beryl Sharlot was appointed as a Vice President of the Association subject to confirmation by the members of the Association at the Annual General Meeting (AGM).
        • Council approved a resolution for presentation at the AGM to re-appoint RSM Audit UK LLP as auditors.
        • The register of Association members will be closed from 15 May to 14 June inclusive.
        • Council approved draft terms of reference for two new advisory panels – the Ethnic Communities advisory panel and the 16-30 advisory panel.
        • Council also approved revised terms of reference for the Register of Advisors.
        • The quarterly review of top 10 risks was completed.

    The next meeting of the Council of Management will be on 10 May 2022.

  • 7 December 2021

    At a meeting of the Council of Management held by remote video conference on 7 December, the following decisions were made.

        • The Council noted the resignation for personal reasons of one of its members, Torie Robinson on 1 December and wished her well for the future.
        • A revenue budget and business plan for the charity were approved for 2022.
        • Council reviewed and renewed the charity’s advisory panels covering scientific awards, research, women and health and clinical practice.
        • It reviewed, updated and renewed its scheme of delegation. This is the record of how the Council delegates authority on some matters to the Chief Executive to make decisions and manage day to day operational issues.
        • It reviewed the charity’s corporate risk register and ensured adequate measures are in place to manage those risks.
        • It reappointed William Fiennes and Professor Gus Baker as Vice Presidents of the Association when their current term of office expires at the date of the AGM in June 2022.
        • It has been two years since the Council of Management last met in person in the same room. During that time all meetings have been held by video conference. If pandemic conditions allow, the Council has targeted to hold its scheduled meeting in May 2022 at New Anstey House.
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