Contribution
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.