Down’s Syndrome Regression Disorder

Jeremy Wright Excerpts

Tuesday 8th July 2025 Westminster Hall

[Several hon. Members rose—]

[Sir Jeremy Wright (in the Chair)]

I remind all colleagues that they should continue to stand if they wish to be called.

--- Later in debate ---

[Several hon. Members rose—]

[Sir Jeremy Wright (in the Chair)]

Three Back Benchers are seeking to speak. I hope it will assist colleagues if I say that I intend to start calling Front Benchers at about 5.08 pm.

--- Later in debate ---

[Jen Craft]

I thank all colleagues who have taken part in today’s debate. I hope it has been a chance to raise awareness of this much overlooked and under-researched condition. I thank colleagues who shared stories of their individual constituents. My hon. Friend the Member for Portsmouth North (Amanda Martin) shared the story of Ewan, and my hon. Friend the Member for Hertford and Stortford (Josh Dean) shared Jude and Ruth’s moving story.

I also appreciate the contribution of the hon. Member for Strangford (Jim Shannon), who talked about the wider implications for families of caring for someone with Down’s syndrome, as well as the contribution from the hon. Member for Birmingham Perry Barr (Ayoub Khan), who raised the need for more awareness of Down’s syndrome regression disorder.

I thank the Liberal Democrat spokesperson, the hon. Member for Chichester (Jess Brown-Fuller), for her kind words and for talking about the need for co-ordinated care and lifelong support for those with Down’s syndrome. I am also grateful to the right hon. Member for East Hampshire (Damian Hinds) for his contribution. He spoke about the need for more research, and for better support and care for the families of people with Down’s syndrome.

My thanks also go to my hon. Friend the Member for Mid Cheshire (Andrew Cooper) for sharing a passionate plea to listen to parents and families, as we are the real experts. That is something I would like the Minister to embed in the guidance under the Down Syndrome Act—listening to those who are experts in the condition. Fairly often, when a person does not receive timely treatment for things like Down’s syndrome regression disorder, it is because those who know them best are not listened to. They are seen the way they have presented on the day, without their entire history being taken into account.

I also thank the shadow Health Secretary, the right hon. Member for Melton and Syston (Edward Argar), for saying that this is very much a cross-party issue. I hope we can move forward in that spirit and see it as something that is beyond the political sphere. We need to act on it so we can come to a resolution for those who are affected by this horrifying condition.

Finally, I thank the Minister for his comments, and particularly on his commitment to publishing the Down Syndrome Act guidance in the autumn, which I am sure will be welcomed by many. I hope there will be specific measures to raise awareness of Down’s syndrome regression disorder, and a pathway so that parents, carers and those with Down’s syndrome regression disorder can get support. Signposting can often be helpful in showing them where to go.

One thing that comes up time and again, when speaking to parents of children or young people with Down’s syndrome regression disorder, is that they are often unaware of it until it happens. It is helpful to understand that what is happening to their child is not unique, and that it is a recognised condition for which treatment is available. That is one of the more helpful things that the Government can do.

Again, I thank everyone for taking part in this debate, and I hope this is the start of real progress on the issue.

[Sir Jeremy Wright (in the Chair)]

I add my thanks to all who participated.

Question put and agreed to.

Resolved,

That this House has considered Down’s syndrome regression disorder research.