Transforming lives through advocacy, research and care
At the Epilepsy Society, our vision is for a world where people with epilepsy lead the lives they want to lead. This year, following a major survey of people affected by epilepsy, we have become clearer in describing that Vision and setting out how we intend to make it happen.
It’s all about you
Earlier in 2021, we carried out a detailed survey, to find out what concerns you most around epilepsy and what are the changes that you would like to see. More than 1,000 of you responded and this gave us a unique insight into the landscape of epilepsy and a solid base on which to build an exciting new agenda for the future across our three core pillars at the Epilepsy Society: advocacy, research and care.
What you told us
Unsurprisingly, three quarters of survey respondees felt that epilepsy care was falling behind that of people with Alzheimer’s, dementia, cancer and heart disease. A similar number wanted to see better access to epilepsy specialist centres such as ours. Only 43% were aware that they could be referred for specialist diagnosis.
Over half of respondees have not discussed a different treatment option with their doctor. Just one in five have discussed brain surgery and only 4% have talked about genomic sequencing.
The survey showed a tangible desire for a greater understanding of the causes of epilepsy and of SUDEP – Sudden Unexpected Death in Epilepsy.
An overwhelming 92% felt more money should be channeled into research to push forward the boundaries of discovery. It was interesting to note that on average, people believed that 24% of government funding into medical research went to epilepsy. The actual figure is 0.3%.
Alongside this, there is still an urgent desire to tackle ongoing stigma in the field of epilepsy at every level – public, government, healthcare and the workplace. It is sobering to read that, in spite of our Calm, Cushion, Call campaign, 83% of people still felt there was a lack of awareness around seizure first aid training.
Across our advocacy, research and care teams, we have been working hard to look at how we, as a charity, should evolve and respond to what people are telling us.
Research - transforming lives
Our research team have exciting plans which, in time, could transform the lives of people with epilepsy across the UK, employing the most advanced diagnostic techniques and treatment options, available.
Today, our research focusses on important but specific areas: genomics, neuroimaging, neuropathology, pharmacology and health service research. We have a rich source of invaluable data across all these areas but historically our work has been siloed.
We want to move to a big data-driven intelligent approach that combines information from each strand of our work. We want to amplify the use of existing data through novel approaches to re-evaluation and analysis.
We believe that by weaving ideas and diverse research strands together, we will be able to generate a more complete and better understanding of each individual’s needs. We want to develop a unique personalised platform that gives each person a 360 degree assessment using every piece of innovative diagnostic equipment at our disposal. It will be a first in the world for epilepsy.
We want this to become routine practice so that people no longer feel left behind by the healthcare system. The right to choice and options and specialist diagnosis will be there for everyone when they need it.
As we stand, an evaluation at the Chalfont Centre is widely regarded to be the best there is. But we can be better still. By creating synergies across all our areas of research, we hope to bring about radical transformational step changes in the way we treat people. And that is something that really excites us.
We will be better placed to challenge healthcare, linking genes with epilepsy and other accompanying disease; addressing treatment resistant epilepsy; prescribing individualised therapies based on our better understanding of the disease, reproductive health, the impact of climate change and unpredictable external drivers such as the Covid-19 pandemic.
At the Epilepsy Society we stand on the shoulders of giants but science must never stand still. We are on the cusp of a big data revolution that has the potential to put us on a par with the care of Alzheimer’s, dementia, cancer and heart disease. It offers the scope for knowledge and understanding, risk mitigation and a greater capacity to meet the needs of more people.
There is no doubt that this Vision will require historic levels of research funding. But we must find a way. The lives of literally millions of people with epilepsy across the world could be transformed, if we do.
Care - enabling and rehabilitation
The pandemic held a mirror to both our weaknesses and our strengths. It accelerated the speed of change at a pace few of us were probably prepared for. One of the major learnings has been the breaking down of barriers between health and social care. We have seen how care systems can learn and evolve through stress, creating a more robust integrated model of care.
Building on this, our ambition is for the Epilepsy Society to grow as a nationally renowned centre of excellence for care, supporting people with refractory epilepsy and complex care needs. We aim to improve the overall health and wellbeing of people with complex epilepsy through a fully integrated model that blends medical expertise and social care knowledge.
Moving forward, we recognise that specialist epilepsy expertise is our USP and therefore we want new social care placements at the charity to be for those who can benefit most from the specialist services that we have to offer.
In particular, we want to provide support that will enable people with complex needs to progress to living in a less intensive environment including the possibility of a family home.
It is important to say that, subject as always to there being sufficient social care funding to make this possible, we will continue to support the people now living at the charity as well as we always have done. And that it is envisaged that this new approach will apply only, where appropriate, to new referrals.
Advocacy - a voice for people with epilepsy
Underpinning research and care, will be our advocacy work which continues to be a voice for people affected by epilepsy.
As a respected authority in the field of epilepsy, we know that when our campaigning voice is heard at government level, politicians will listen and act.
We cannot work in isolation. We must make sure that our plans are relevant to the local and national agenda. When we talk about our plans to expand and explore new directions, these will not sit in isolation but will dovetail into local and national plans: including the National Life Sciences Strategy, and the Buckinghamshire Industrial Strategy, where we are based.
Our campaigns are driven by the needs of people with epilepsy: the need to feel safe and protected by the law when online; the need for safer medicines that will control a woman’s seizures without harming her baby during pregnancy.
And we will continue to forward the cause of epilepsy by relevance to the agenda of the day.
Making it happen
We must now begin to consider how we can make best use of the resources of the charity to ensure that we can realise the hopes and dreams of the people we support.
Later this year, we hope to share with you further details of our long-term plans and how we are going to make our dreams a reality. And how we can work together to make this happen.
We have the science, the expertise and the commitment. Now we are working on a plan that will ultimately enable us to tell our beneficiaries – epilepsy care no longer lags behind other major diseases. In fact, epilepsy is irrelevant.