Clive Treacey Safety Checklist

Zubir Ahmed Excerpts

Monday 17th November 2025 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Dr Zubir Ahmed)]

I thank my hon. Friend the Member for Lichfield (Dave Robertson) for securing this important debate. I recognise the efforts of Clive’s family, particularly Elaine and Michael who join us today in the Gallery.

As my hon. Friend described in his wonderful speech, Clive Treacey was a caring, gentle and humorous man, who liked to paint and who enjoyed gardening and listening to music. As we have heard, Clive also had a learning disability and epilepsy, and sadly he died in 2017, at the age of just 47, following a seizure. His loss, I am sure, is still felt very deeply by his family and loved ones. I pay tribute to all the work that they have done by channelling the tragedy they have been through, and the work that they continue to do in advocating for change following Clive’s death.

The independent review into Clive’s death highlighted that there were multiple system-wide failures in delivering his care and treatment that together placed him at a higher risk of sudden death. It was found that Clive experienced sub-optimal care and support throughout his life and death, and that he was not always placed in settings that could meet his needs, in terms of both epilepsy care and support for his disability.

I am pleased that since Clive’s death, meaningful changes have been made. Following the publication of the independent review into his death in December 2021, organisations directly involved in Clive’s care developed high-level actions in response to its findings and there was an overwhelming commitment from all organisations involved to address the systemic issues raised in the report. NHS England midlands region set up a group that became known as the Clive Treacey conscience group and last year it published “Clive’s Way: A Conscience Manual”, outlining in detail the progress the midlands region is making in taking forward and implementing the learnings from the independent review.

We know that around 30% of people with epilepsy have a learning disability and that the risk of sudden unexpected death in epilepsy is much higher for those with a learning disability, as my hon. Friend pointed out. The latest annual LeDeR—learning from lives and deaths—report found that epilepsy was one of the most common underlying causes of death for people with a learning disability between 2021 and 2023. That highlights how crucial it is that information and support for patients with epilepsy who have a learning disability are tailored to their individual needs. We welcome the development of the Clive Treacey safety checklist; it is an important part of Clive’s legacy. We encourage commissioners and service providers to use the checklist and its accompanying guidance as a key tool when designing services for their local populations and to ensure that the steps outlined in the checklist are followed whenever a patient experiences a significant change in their care.

Since Clive’s death, a number of NHS regions have reviewed the way that they care for patients living with a learning disability and epilepsy—

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Motion made, and Question proposed, That this House do now adjourn.—(Christian Wakeford.)

[Dr Ahmed]

It is a very positive development that a number of integrated health boards in the midlands, the north-west, the north-east and Yorkshire have carried out detailed appraisals to identify any weaknesses in their services.

My hon. Friend the Member for Lichfield raises an important point about how we can go further, including how annual health checks can significantly reduce the chance of premature death in people with a learning disability who have epilepsy. NHS England has developed a quality framework to set expectations for annual health checks for people with a learning disability and accompanying health action plans, which are vital to identifying needs early, providing the right support and mitigating the risk of sudden death.

The National Institute for Health and Care Excellence guidance on epilepsies in children, young people and adults recommends that people with a learning disability should have monitoring reviews at least annually. The NICE guidance on epilepsies also includes a number of recommendations on how information should be tailored and adapted for patients with epilepsy who have a learning disability. It sets out that patients with a learning disability should have access to specialist care and should receive co-ordinated care using a multidisciplinary approach. For young people with a learning disability who are transitioning to adult epilepsy services, transition planning should begin early. This Government expect commissioners and service providers to take NICE guidelines fully into account when making decisions about how to best meet the needs of their local communities.

We are rolling out mandatory training on learning disability and autism to health and adult social care staff. Support for people with a learning disability is also a key area of focus for the NHS RightCare epilepsy toolkit. The toolkit includes a number of actions that systems should take to support people with epilepsy who have a learning disability, such as ensuring that specialist epilepsy services are upskilled and make reasonable adjustments to support the needs of people with a learning disability, including working in partnership with staff trained in how to manage learning disability. The toolkit also sets out that services should ensure that community specialist nurses in learning disabilities have the right training in the management of epilepsy.

I recognise the important work of organisations such as Epilepsy Action and SUDEP Action. Epilepsy Action has produced the “Step Together” toolkit, which describes what good-quality integrated services for people with a learning disability and epilepsy should look like. SUDEP Action has developed an epilepsy self-monitoring app, which is a digital tool designed to help patients understand their own personal risk of seizures and to track that risk. SUDEP Action has played a key role in the development of the Clive Treacey safety checklist.

Once again, I thank my hon. Friend the Member for Lichfield for securing this important debate, and I thank the hon. Member for Strangford (Jim Shannon) for his contribution. It goes without saying that Clive’s death must not be in vain and that we must learn the lessons to ensure that this does not happen again. I believe we also need to commit further that no longer in our national health service should a tragedy be the only way to make things better for the patients and citizens we serve and to save their lives.

Finally, the patient voice must be our guiding star when designing services and safety checklists and keeping patients safe in the community and in hospital. I believe that through the actions we have taken in our 10-year health plan and the actions that I have taken as the Minister responsible for patient safety, we can undertake today to Members of this House that that shall be the case going forward in this Government’s approach to patient safety.

Question put and agreed to.