‘Checklist must be rolled out as tribute to Clive’
Clive Treacey was failed in life, but his family are ensuring there is a lasting legacy in his name.
The work of SUDEP Action and The Clive Treacey Checklist was commended in a debate in The House of Commons on Monday evening.
Dave Robertson MP (Lab, Lichfield) led the debate in support of the Clive Treacey Checklist, in recognition of Clive, who was born in Lichfield. Mr Robertson said: “So often, we hear in this place stories of people who have gone through unimaginable hardship, but who somehow find the strength within themselves not to turn that into anger. They do not turn inwards; they turn outwards, and campaign to make sure that the same does not happen to other people. That is an example of what we have here. It is the very best testament to the human spirit that we see so many people who are able to do that.”
Clive Treacey lived with learning difficulties and epilepsy. However, those things did not define him, he was a talented artist and gardener, gifted with a brush and able to make plants spring seemingly from nothing. He loved music, especially Elvis Presley and devoted to his family.
Clive’s sister Elaine says that her brother was ‘engaging, humorous, gentle, and loving’.
Clive died from SUDEP in 2017, aged 47. He had been living in residential placements for years up until that point, moving often. Before he died, Clive’s family had become worried about his deteriorating health—and, tragically, so had Clive. He left a message on his father’s phone, which was not received until some days after his death, saying that he was dying and needed an ambulance. Clive was not listened to, and his family were not listened to, and the consequences were devastating.
Dave Robertson added: “Tragically, Clive’s case is not an isolated example of these failures; this is a story that is far too common across the country, but there are things that we can do to change the story. That brings me to the Clive Treacey Checklist. The checklist is a tool developed after Clive’s death, and an important part of his legacy. I place on record my thanks to Professor Mike Kerr and Professor Rohit Shankar for their work on the checklist, alongside the charity SUDEP Action, NHS England Midlands, and the Cornwall partnership NHS Foundation Trust.”
The Clive Treacey Checklist was designed for commissioners and service providers, whether the care is provided in a specialist hospital setting or out in the community, and it outlines the steps that should be gone through annually, as well as whenever a patient moves between services or has a big change in their care, such as a new team looking after them. It recommends up-to-date health plans, genuine consultation with parents and families—not box ticking, but genuine consultation—and proper epilepsy training for staff.
Mr Robertson said: “The Clive Treacey safety checklist is not a document that should be put in a drawer somewhere in an integrated care board, left alone and looked at once every so often when someone asks a question about it. It is a practical tool and the accompanying guidance, at just 24 pages long— for the NHS, a short story at best—is packed with information, and it is a document that can save lives.”
After his death, Clive’s family had to fight hard for answers. They had to fight to secure an inquest into his death, and later to secure an independent review. When that review was completed in 2021, four years after Clive died, it confirmed what they had suspected all along: that Clive’s care fell far short of what should be expected for somebody with drug-resistant epilepsy, and it identified multiple system-wide failures in the delivery of his care and treatment, which put him at greater risk. It found that his death was potentially avoidable, and that he had been failed both in life and in death.
Zubir Ahmed, Parliamentary Under-Secretary for Health & Social Care (Lab), recognised the need for annual health checks to significantly reduce the chance of premature death in people with a learning disability who have epilepsy. He told the House that NHS England has developed a quality framework to set expectations for these annual health – and that 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.
He said: “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.”
Mr Ahmed added: “I recognise the important work of organisations such as SUDEP Action. They have 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.”
Jim Shannon MP (DUP, Strangford) said: “Although nothing can bring back the life of this young man, his legacy can be life-changing for so many others. This checklist, rather than being best practice, must be rolled out as a recommended tool to each trust and area of the UK as a tribute to Clive Treacey.”
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Read more about The Clive Treacey Checklist https://sudep.org/wp-content/uploads/2023/12/report_document_a4_10-11-23_digital.pdf
Watch the debate in the House of Commons in full Clive Treacey Safety Checklist (Parliamentary debate) | SUDEP Action
