Board of Trustees

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

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.

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.

I am a married mum of three daughters, two of whom are now at university. I recently learnt that I am autistic, as are two of my daughters. I am fascinated with how the brain works and studies human anatomy in the 90s.

I’ve worked in the North West NHS for over 20 years as a senior manager, always aiming to improve services whether that’s in emergency departments, children’s wards, mental health, specialised commissioning or when leading the roll-out of covid-19 vaccine.

I was diagnosed with temporal lobe epilepsy, whilst developing the Northern Children’s Epilepsy Surgery Service (NORCESS).

I was told that the strange sensations and confusion I had been experiencing were likely epilepsy seizures and I haven’t driven since that day in October 2014. My seizures have gradually got worse and as medication doesn’t work, I am awaiting sEEG to explore the possibility of surgery. Sadly, my epilepsy resulted in early retirement.

Two years ago, my worst fear was realised when our youngest daughter started having tonic-clonic seizures and was admitted to hospital; watching scared and helpless is something I wish we could end for all families.

My passion is in improving awareness, reducing inequalities and increasing research. I believe I bring valuable experience as a commissioner of specialised NHS services, experience of chairing the staff Disability and Wellbeing Network and working to improve access to health services for underserved communities.

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.

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.

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.

Biography to come

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.

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.

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!

I reached out to the Epilepsy Action helpline when a family member was diagnosed with epilepsy and found the support helpline and information that Epilepsy Action provides extremely valuable and reassuring at a very uncertain time.

In 2024 I was elected as a Trustee for Epilepsy Action. I believe that the 2030 Epilepsy Action Strategy around support, understanding, inclusivity and improving lives is both inspiring and vital for the future.

I bring skills in financial governance and strategic insight through my professional background analysing and supporting healthcare companies at a senior level.

I have a research-based degree in Medical Science, which included a year working in cancer research at a global pharmaceutical company. I’m also a qualified Chartered Accountant and was fortunate to combine both interests working for more than fifteen years as a Healthcare Analyst. The role included assessing the healthcare economics of new drugs and devices in development, including anti-epileptic therapies. As part of this, I also helped support innovative companies to access new equity funding sources.

For the past few years, I led corporate development and strategy for a group of hospitals, building long-term financial forecasts to align with our strategic goals.

Currently, I’m grateful to be in a position to spend precious time with my young family during their school years. I’m also a volunteer for a charity that provides weekly hands-on support to local families with children under five years old, who are experiencing challenging times. Knowledge of safeguarding is an important area of the service.

In summary, I believe I can bring skills in financial and strategic insight as well as working as a team, alongside a deep empathy and desire to improve the lives of those living with or caring for people with epilepsy.