Commons debate highlights need to tackle failures in risk care
MP Olly Glover leads House of Commons debate on SUDEP and epilepsy risk communication.
SUDEP Action’s Constituency MP Olly Glover led a debate in the House of Commons on Wednesday (April 22), calling on the Government to develop a modern framework for SUDEP and epilepsy risk management.
He said: “There are two key themes I want to raise today in this debate, firstly the SUDEP and epilepsy risk communication and understanding gap – and secondly the inherent systemic failure to prevent deaths following prevention of deaths reports.”
Mr Glover said epilepsy and SUDEP must be included in neighbourhood health plans and integrated with acute hospitals, social care and community mental health settings to maximise the opportunity for prevention, and there must be safe levels of epilepsy specialist doctors and nurses in local areas. Annual checks for people with a learning disability should include a SUDEP check.
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. SUDEP Action’s Director of Policy & Influencing Jane Hanna told me that waits of this magnitude are unsafe. Her partner Alan waited four months — and died suddenly five months later.”
Bereaved families consistently say that honest, person‑centred SUDEP risk discussions are essential to safety and advocacy.
Mr Glover added: “Virtually every national and local report on epilepsy deaths highlights this gap. SUDEP Action’s support service is caller‑led and stays with families for as long as needed. They offer counselling, research participation, volunteering, and a casework service supported by an expert clinical panel to help families navigate investigations after a death. Families have driven change.”
Government Minister Sharon Hodgson, Parliamentary Under Secretary for the Department of Health & Social Care, said, she was happy to meet Mr Glover to discuss action points further. She said: “SUDEP is a vitally important issue, and we must learn lessons when deaths occur and make the changes needed. We must also ensure timely access to the right specialist support for people with epilepsy including tackling long waits for neurology appointments and continue to build the evidence base for innovative treatments.”
The Minister said cutting waiting lists was a key priority, including for neurology services and that the Government was committed to achieving the NHS Constitutional Standard that 92% of patients should wait no longer than 18 weeks from referral to treatment by March 29.
She said: “There is a statutory duty for organisations to respond to Prevention of Future Deaths reports issued by a coroner when their investigations identify circumstances that create a risk of future deaths, and this provides a clear mechanism for organisations to set out actions they will take to address these risks. “We are working with the NHS and partners to embed structured risk assessments and consistent risk communication for epilepsy in routine practice so that known risk factors are identified early and addressed where possible.”
Today, SUDEP Action continues to be powered by bereaved families but many of the same systemic issues the charity faced thirty years ago remain, including poor access to medicines and poor medicines management, a failure to communicate risk, and the inadequate recording of epilepsy deaths. Studies find that up to 80% of epilepsy deaths might be prevented.
Safety tools exist to help tackle complacency relating to seizures. SUDEP Action worked alongside the Epilepsy Research Institute to identify tackling epilepsy deaths as the number one research priority, yet research knowledge does not reliably, or quickly, reach neurology consultations, primary care, or social care. NICE guidelines exist, but the service is inadequately supported. Safety tools such as SUDEP Action’s EpSMon app and its Seizure and Safety Checklist exist but there is no mandatory SUDEP training.
SUDEP Action CEO Sammy Ashby said: “We recognise the Government statement relating to the work they are doing in this area and encourage them to engage directly with us on this moving forward, as we are the only UK organisation dedicated to preventing epilepsy deaths. SUDEP Action is determined to see a future where there are no preventable epilepsy deaths and where anyone bereaved by epilepsy can access specialist bereavement support. We urge Government to take decisive action to help this become a reality – so no more families face the devastation of their loved one dying due to their epilepsy.”
Jane Hanna, SUDEP Action Director of Policy, added: “The debate last night was an important start. The offer of a ministerial meeting, at last, is one step forward, as well as ministerial encouragement that all should be using SUDEP Action’s safety tools. However, action is urgently overdue on the prevention of death reports produced over the years. What we urgently need after 30 years of SUDEP Action service is practical and trackable state plans to support and lift the burden from the suddenly bereaved.”
