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—