Olly Glover

I thank the hon. Gentleman for his intervention, and he is absolutely right to raise prison as another setting where people are often vulnerable and where more needs to be done in relation to SUDEP. Sepsis, which has a similar history of systemic failure, will shortly benefit from a modern service framework co-produced with the UK Sepsis Trust. Meanwhile, neither epilepsy nor neurology is explicitly mentioned in the NHS 10-year plan. There is a mandatory national framework to protect unborn children from anti-seizure medication risks, but there is no mandatory national framework to protect people living with epilepsy from SUDEP and epilepsy deaths, despite 30 years of evidence and repeated calls for action. SUDEP Action provides intensive assistance on 60 to 70 investigations of deaths each year and sees the toll of long, drawn-out processes and, far too often, a defensive culture by default. It also sees a painful accountability gap where inquests are not even held and families feel silenced. The complacency around SUDEP, seizures and epilepsy, which was first called out by Liam Donaldson as chief medical officer in his annual report in 2021, carries wider harms for communities and persists in too many places. Moving towards my conclusion, I wish to outline some key asks for the Minister. There are hundreds more stories from families that I wish I could have shared today, but I always endeavour to be as brief and concise as possible in this setting. My thoughts are with all in the bereaved community, whom I stand by and will continue to campaign for. In order to effectively support the wonderful charities that are doing so much to prevent SUDEP and support families through this, I have four questions for the Minister. First, will the Minister commit to developing a modern framework for SUDEP? This would require policymakers working on epilepsy to work with those with lived experience via SUDEP Action and to spread good practice. In addition to mandatory information on side effects from anti-seizure medicines, there must be a framework for person-centred information about SUDEP and seizure risk, as well as national training initiatives that support whole-system learning. Epilepsy and SUDEP must be included in neighbourhood healthcare, integrated with acute hospitals, social care and community health settings, as well as in prisons as the hon. Member for Southgate and Wood Green (Bambos Charalambous) said, to maximise the opportunity for prevention. There must be safe levels of epilepsy specialist doctors and nurses in local areas. Improving the quality of the annual check for learning disabilities by including a SUDEP check for people with epilepsy would be a significant step forward in upskilling primary care. Secondly, will the Minister commit today to arranging a meeting with SUDEP Action? Ministerial colleagues have offered engagement on prevention of future deaths reports with SUDEP Action, promising meetings in letters sent in January and February, but such meetings have yet to take place. Thirdly, will the Minister support a national oversight mechanism in the Hillsborough Bill? Families have been campaigning for an amendment to the Hillsborough law so that there can be a single, permanent oversight body to prevent the same mistakes that have happened across different tragedies, such as Grenfell, the Post Office, Horizon and infected blood. It would track progress across Departments and public authorities, publicly report on failures, delays or resistance to reform, and prevent the repeated cycles of injustice that are seen after major disasters and scandals. Finally, will the Minister accept an invitation to visit my constituency to see the work of SUDEP Action, a charity built by families and clinical champions from grief, sustained by courage and determined to stop deaths? I am grateful for the Minister’s time in this Adjournment debate and look forward to her response.