Down’s Syndrome Regression Disorder Debate
Full Debate: Read Full DebateEdward Argar
Main Page: Edward Argar (Conservative - Melton and Syston)Department Debates - View all Edward Argar's debates with the Department of Health and Social Care
(1 day, 19 hours ago)
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It is a pleasure to serve under your chairmanship, Sir Jeremy. I pay tribute to the hon. Member for Thurrock (Jen Craft) for securing this debate. We thought we were going to have it a few weeks ago, and then things moved around, so I am pleased that she has been able to secure this time slot, because the issue is extremely important. I would not normally speak in Westminster Hall as the shadow Secretary of State, but this is a very important issue on which I know she has spoken powerfully since her election to this House.
This is not only an important debate, but one that has been conducted in a tone that does credit to this House, without party politics. Instead it has focused on those who are genuinely impacted by the topic we are debating. This Chamber so often succeeds in giving a voice to those who might not normally have their voice amplified in political debate, or indeed in the main Chamber, to the extent that it should be. In that sense, this is extremely useful. Although Down’s syndrome has been debated in the broadest sense by this House on numerous occasions, Down’s syndrome regression disorder has been debated rather less so. I recall that in March the hon. Member for Thurrock talked about it in a speech. Today’s debate has helped do something that was among her objectives, which is to raise the profile of this very important issue and draw greater attention to it.
Right hon. and hon. Members have already highlighted the nature of Down’s syndrome regression disorder, how it works, and what happens. It is important to note that, according to research, 1% to 2% of young people with Down’s syndrome between the ages of 10 and 30 can experience it. As the hon. Member for Thurrock and others have highlighted, one of the great challenges, and one of the most impactful parts of this, is the speed with which regression can occur, often without warning, or possibly with warning for those who know what to look for, as she touched on. She spoke very movingly about Fran, giving a real life example of how regression can happen, its impacts, and what can bring it about. It is important to remember, as hon. Members have highlighted, the impact on family when regression disorder occurs.
The hon. Member for Thurrock set out clearly the challenges: the speed with which regression can occur; the lack of knowledge among many, including some in the medical and caring professions, of Down’s syndrome regression disorder; and the challenges around getting a diagnosis and treatment. Like others, I pay tribute to the work of the Down’s Syndrome Association for its campaigning on the broader issues, and specifically on this one, and the helpful briefing and advice that it sent to right hon. and hon. Members.
It is a pleasure to serve opposite the Minister for Care. Although we might occasionally tussle on some things, I know he is a very thoughtful Minister who understands his brief. I therefore look forward to his response; I know it will be considered and measured. I have a few questions for him, which will come as no surprise. First, in 2021, the Down’s Syndrome Association supported research undertaken by the University of Cambridge. I would welcome from the Minister his thinking on how that can be built upon, and what further work can be done around that. Having been a Minister in the Department, I know that it is not always directly within the Minister’s gift to do x and y, because often it will be undertaken by arm’s length bodies or different parts of the system, but I would be grateful if the Minister could set out how the Department can drive forward an increased focus on research.
We have heard about some trials—some treatments—in the US that may offer a positive way forward. To echo the words of the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), I would be grateful if the Minister could set out what more can be done to create clearer diagnostic and treatment pathways for young people with Down’s syndrome regression disorder. I am conscious that, in 2022, Sir Liam Fox secured the passage into law of his Down Syndrome Act, but the guidance on it is still outstanding. Does the Minister have a timeline for when that will be produced, and might that guidance offer an opportunity to wrap in some of the issues around Down’s syndrome regression disorder, to better inform people and raise awareness?
I am conscious that the Minister needs time to reply, and I suspect the hon. Member for Thurrock will want to have a few minutes at the end. I will therefore conclude here. I hope that today’s debate is one of those in this place in which we can see broad agreement across both sides of the House and, in the Minister’s remarks, the potential way forward. As well as debating this and raising awareness, what we all want to see is progress. I very much hope that the Minister will be able to give me succour in that respect.