What we want for NHWes

Thank you to everyone who wrote to their Labour MP asking them to come and see us at our stand at the Labour Party Conference. We were inundated with MPs wanting to find out more about epilepsy and support our campaigns as a result of your invitations. This will really help to amplify the voices of people with epilepsy in parliament.

We were able to discuss how life-changing a diagnosis of epilepsy can be for their constituents and the need to provide a medical exemption for people who damage their teeth due to a seizure.  But we also talked about the new 10-year NHS health plan. While there is a firm emphasis on prevention in terms of health, we have been arguing that the greatest key to prevention for people with epilepsy has to be research. 

There isn’t a cure for an ailment today that isn’t the result of painstaking research that has led to new treatment options and new medications.  We were asking MPs to back us in our calls to Health Secretary Wes Streeting, for the new NHWes to include:

• Better epilepsy healthcare
• more funding for epilepsy research
• epilepsy to be recognised as a cliff edge condition
• a medical exemption for teeth damaged during a seizure
• a complete review of the medicines supply chain
• a reduction in the number of epilepsy deaths

We spoke to over twenty MPs and ministers, many local councillors, conference delegates, researchers and other charities and organisations to raise awareness about epilepsy and our personalised chocolate bars were an excellent conversation starter. (insert image of chocolate). Many people spoke to us about their own or family members’ challenges of living with epilepsy and the need for better understanding, training and opportunities. Over the coming weeks we will be following up on the pledges of support and meeting with MPs, ministers and other supporters to further push epilepsy up the political agenda. 

Fringe event

This year we held a Fringe Event at the conference, with a distinguished panel looking at ways that the Third Sector can support the Public Sector. Our panellists, chaired by Alicia Greated Executive Director of CaSE (Campaign for Science and Engineering), included representatives from Parliament, a think tank, media, charity and an energy company which invests in local communities. Our focus was to demonstrate how the third sector can support the NHS through deliverable services but also through innovation.

Nicola Swanborough, Head of External Affairs at the Epilepsy Society discussed how, by developing part of its 300-acre estate, the charity could accelerate epilepsy research, contribute to the Government’s 1.5m housing target and help to position the UK as world leaders in life sciences.

She said: “Charities have always been innovators, responding to the needs of the community. We are fortunate to have a legacy of a large estate which was bequeathed to us for the benefit of people with epilepsy. By developing a part of the land for 975 houses, we could raise £93m which would be invested directly in research leading to faster diagnosis and better treatment options for people with epilepsy.

“It would provide much needed housing in Buckinghamshire, including 50 per cent affordable housing, and would enable our scientists to continue their world-leading research into epilepsy. Most importantly, it would bring hope of a seizure-free life within the grasp of so many more people whose seizures cannot be controlled by current treatment options.”

Rosemarie Pardington, Chief Executive at the Epilepsy Research Institute expressed her support for the charity’s plans, emphasising the desperate need for greater funding in epilepsy.

Paul Davies MP spoke about the role of charities as being part of the backbone of the health system but also recognised their role as innovators, connecting people and contributing to inroads being made to improving health and tackling loneliness. 

Daniel Francis, MP for Bexleyheath and Crayford spoke passionately about the life-changing consequences of epilepsy and how it has affected his wife and one of their children. The journalist Susie Boniface, known as Fleet Street Fox also has epilepsy and she talked about the significant lack of funding for epilepsy research. 10% of people will have a seizure in their lives and 1% of people will then go on to develop epilepsy. Only 0.1% of research funding is spent on epilepsy. She spoke passionately about the need to increase funding and how this can reduce stigma. Susie posed the question, why doesn’t the government fund 1% of funding research on epilepsy?

Dame Claire Moriarty, Chief Executive of Citizens Advice highlighted two projects which have improved people's access to the services they need while making significant cost savings to the NHS. Working in collaboration with a university doing research, local NHS providers in Liverpool and having advisors in GP surgeries, people are getting support in good time which in turn is reducing the number of GP and hospital appointments. In Winchester, a project where advisors are part of a mental health setting, has seen a 40 to 1 return on investment.

Miriam Levin, Director of Participatory Programmes spoke about the Mimby Majority and how engaging with a wide cross-section of local communities and encouraging everyone to have their say would make the planning process less difficult and allow property developers and charities, find out what the community wants but also to learn more about the benefits of releasing capital to fund new research. 

Catryn Newton from Bute Energy, spoke about how the company works closely with charities and local communities to tackle social issues by investing £20 million annually into a community benefit fund from providing pro bono advice to equipping local colleges with kit that can be used to train more skilled workers.

Do check our social media for more clips from the event.