(1 day, 13 hours ago)
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Dave Robertson (Lichfield) (Lab)
It is an honour and a privilege to lead this debate on Government support for the Clive Treacey safety checklist. I secured this debate in Clive’s name, and I want to start by telling the House a little bit about him. I did not have the pleasure of meeting Clive, so I am drawing here on the words of his family, who knew him best. Clive’s sister, and his father Michael, are in the Public Gallery this evening, and I am really glad that they are able to see proceedings. They have been tireless advocates for Clive, making sure that his voice is heard, and I hope that I can do their efforts justice tonight.
Clive was born in Lichfield, in my constituency, in 1969. He was soon diagnosed with a learning difficulty, and, between the ages of 8 and 10, with epilepsy. I will cover both those factors today. Sadly, they are important to understanding Clive’s death and the failures in care throughout his life, but they do not define what Clive’s life was. I want to ensure that the House hears who Clive was. Clive 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 was often singing and dancing—his family remember him as the life of the party. He wanted to work in a garden centre, helping to raise plants; to have his own home, close to family; to own a cat; to learn to drive; and to go on holiday to Blackpool and Somerset. Clive was as devoted to his family as they were to him. He was known as the family calendar, never forgetting a card for a birthday, Christmas, Easter or any other reason. Clive’s sister Elaine says that her brother was
“engaging, humorous, gentle, and loving”.
His parents, Pauline and Michael, have said his heart “knew no bounds”, and describe their son’s “magical qualities” throughout his life. In all the accounts of Clive, his love and optimism shine through.
Clive passed away in 2017 at just 47 years of age, after a seizure caused by his epilepsy brought on cardiac arrest. This is known as SUDEP—sudden unexpected death in epilepsy. Clive 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 dad’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.
After that terrible event, 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: the independent review found 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 delivering 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.
What did that mean in practice? It meant that the management of Clive’s epilepsy was fragmented, and the link between his epilepsy and the sometimes challenging behaviours that he could exhibit when stressed, such as not taking his medication, withdrawing to his room, or not communicating, were often overstated. Those behaviours disproportionately impacted the generally held view that Clive required a hospital setting, and despite the fact that he had long expressed a wish to live in his own home, care in the community was discussed with him and his family only towards the end of his life. That is where Clive’s life was, and if we move on past his death, it is important to pay tribute to Clive’s family. Throughout all the suffering, they have been relentless in their focus on ensuring that other families do not go through what they had to. That is why we are here today, and for me, that is entirely what this debate is about.
Jim Shannon (Strangford) (DUP)
I congratulate and thank the hon. Gentleman for securing this debate. His choice of words, his tone, and the compassion in his voice are a real tribute to Clive Treacey, and to his family in the Gallery. The hon. Gentleman has paid a wonderful tribute to Clive, and it is right to put that on the record. I am an Elvis Presley fan as well; he could probably sing better than I can, but that is by the way. Does the hon. Gentleman agree that 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 this United Kingdom of Great Britain and Northern Ireland, as a tribute to Clive Treacey.
Dave Robertson
I thank the hon. Gentleman. That is my first intervention from him. He raises an important point, and when he asked that question, I thought back to a couple of weeks ago, when I was asked at a community event, “What gives you hope, Dave?”. I thought for a while. 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.
Like a quarter of people with a learning disability, Clive had epilepsy. By contrast, one in 100 of the general population has epilepsy. Coupled with that, epilepsy is the second most frequently reported preventable cause of death for people with a learning disability, so not only are people with a learning disability more likely to have epilepsy, but the risks they face from their epilepsy are higher. The risk of SUDEP—that is what killed Clive—is more than three times higher for those with epilepsy and a learning disability than for those with epilepsy and no learning disability.
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. Research suggests that annual health checks can significantly reduce the chance of premature death in people with a learning disability and autism who have epilepsy. Indeed, the chances of death were reduced by 84% for people with a learning disability and epilepsy who had a review of their epilepsy in the past 12 months.
That brings me to the Clive Treacey safety 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 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. 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.
Since Clive’s death, a number of NHS regions have reviewed the way that they care for patients with learning disabilities and epilepsy using the checklist. That includes the NHS in the midlands, where 11 integrated care systems carried out a detailed appraisal using the self-assessment tool developed by the charity Epilepsy Action, based on the work of Professor Shankar, to find the weaknesses in their services and take concrete steps to improve them. More recently, six integrated care boards in the north-west, north-east and North Yorkshire have done the same. It is detailed work, bringing health and care services together, and using joined-up thinking, which we do not hear enough about in Whitehall, to tackle the problem and normalise best practice. That best practice, like the Clive Treacey safety checklist, should be more widespread. I again pay tribute to Elaine and to Clive’s family more broadly for the work that they have done to drive this entire piece of work forward.
The problem is that we still have a postcode lottery. Different parts of the country do and do not follow the checklist; different parts of the country have and have not gone through that detailed work to update their practices. In this House, we cannot tolerate a situation where local outcomes are so varied, so I hope that we hear from the Minister what more we can do, both here in this place and through the Department of Health and Social Care, to ensure that people with learning disabilities are not dying of preventable causes, and to see the very best practice, as set out in the Clive Treacey safety checklist, adopted up and down the country, so that we can end this perverse postcode lottery.
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—
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.