Government pledges to work with SUDEP Action on epilepsy risks
Westminster meeting with Minister results in number of promises to collaborate with SUDEP Action.
The Government has pledged to restore a strategic partnership with SUDEP Action – and is in discussions with the Oxfordshire based charity, following their call for ‘a modern framework for SUDEP and epilepsy risk management’.
SUDEP Action Director of Policy & Influencing Jane Hanna OBE and the charity’s constituency MP Olly Glover (Liberal Democrat, Didcot & Wantage) met with Government Minister Sharon Hodgson, Parliamentary Under Secretary for the Department of Health & Social Care, in a highly productive meeting in Westminster this week.
The Minister agreed to work with SUDEP Action with a view to modernising SUDEP and seizure safety training and information and risk communication, so that ‘every professional who touches the life of someone with epilepsy has the competence, confidence and tools they need’.
The Minister also asked officials to set up a ministerial round table meeting with SUDEP Action to find practical solutions to problems. There are currently more than 21 epilepsy deaths per week in the UK, which profoundly found impacts on families whose children and loved ones have died suddenly.
SUDEP Action wants to see the development of a modern national framework for SUDEP and seizure risk – that extends beyond hospitals into neighbourhoods, communities and integrated care systems. The Minister voiced a willingness to consider this, so that inequalities affecting people with epilepsy – especially those in deprived areas, women and pregnant mums; children; and people with learning disabilities – can be tackled head on.
Jane Hanna OBE said: “We thank the Government for this breakthrough moment of hope following the recent SUDEP debate in Parliament. More than a decade of waiting for ministerial access has been deeply frustrating. We set out the practical solutions innovated through that time, as well as the experiences of suddenly bereaved people still waiting for promised government engagement. It is imperative now, for the sake of precious young lives, that the promises made are followed through quickly. In our local MP Olly Glover, we have found a truly effective champion to hold any government to account.”
Commenting after the meeting with the minister, Olly Glover MP said: “It was a productive meeting which resulted in a number of promises made by the Minister to collaborate with SUDEP Action, to advance the incredible work that the charity is already doing. The Minister has committed to a meeting with SUDEP Action, SUDEP-affected families and supporting MPs to discuss what can be done.”
SUDEP Action is the only UK charity supporting those whose loved ones have died suddenly from an epilepsy-related death. The charity offers tailored support services which include free bereavement support, counselling and help with understanding the inquest process. It also has established epilepsy risk tools in place, including the EpSMon app and its SUDEP & Seizure Safety Checklists.
This week’s meeting in Westminster followed a debate in the House of Commons, led by Olly Glover, in April. In that debate, Mr Glover said: “NICE says first seizures should be treated urgently — yet my own constituents in Didcot & Wantage face nine-month waits for a first-seizure clinic, and nine to twelve months for follow-ups.”
Bereaved families consistently say that honest, person-centred SUDEP risk discussions are essential to safety and advocacy.
Pictured left to right are Olly, Jane and Sharon.
