Down’s Syndrome Regression Disorder

Jim Shannon Excerpts

Tuesday 8th July 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a real pleasure to serve under your chairship, Sir Jeremy. I thank the hon. Member for Thurrock (Jen Craft) for raising the issue, and for how she participates in all debates—with obvious knowledge, compassion and understanding. We thank her for that. Having this debate enables us to contribute.

I am going to give an example of a constituent in Newtownards who went through Down’s syndrome regression and describe the impact that that is having on mum, dad and child. The condition is not always understood—it is only understood by those it directly affects. Down’s syndrome regression disorder is a condition in which individuals with Down’s syndrome experience a sudden loss of previously acquired skills and abilities. I am going to explain that in relation to the couple in Newtownards and their child—she is a young lady now, to be fair. The condition may involve a change in eating patterns, such as not wanting to eat, and extreme slowness and low energy, which may or may not be associated with weight loss. These are things that their child never had before, but all of a sudden they do. There can be enhanced insomnia, obsessive-compulsive behaviours, a loss of independence in activities or a need for significant assistance with activities. Problematically, the person may also be aggressive, not because they are aggressive, but because their frustration sometimes leads to that. They may display anger or frustration, with or without behavioural outbursts. Those are all things that happened.

When I think about this condition, I think of a family I helped last year with their daughter’s disability living allowance renewal. They are in their late 70s and care for their daughter, who has Down’s syndrome. She walks the floors, night and day, in pain. She is in her 50s, and her joints are reacting to the continued walking. Because she is in pain, she has begun to lash out, not because that is her nature—that was never her nature. Her mum and dad have lovingly cared for her for more than 50 years, but their age and the regression mean that they cannot do so in the way that they did. They find it more difficult.

This week, I had the awful news that the father has been diagnosed with cancer. The question for the family is this: how will they cope without their dad? I helped them with the DLA renewal—I understood the issues and tried to put them across as best I could—but I often wonder why someone has to have a DLA or personal independence payment renewal for Down’s syndrome. It is almost inconceivable to me that it happens. But the question is not just about that. What happens while the dad, nearing 80, is battling cancer? What happens if he passes on from this world? Those are questions not simply for that family in Newtownards, but for families throughout the United Kingdom of Great Britain and Northern Ireland who are ageing and wondering what the next step will be for their adult vulnerable child—an adult in so many ways, but also a child in others.

The underlying need for that family, and for so many others like theirs, is support. They do not know how to handle their child who has stopped responding to them, and feel alone with the changes. As a society, we have rightly moved away from institutionalising Down’s syndrome children. But, with great respect, I believe we have also abdicated our responsibility towards adults with Down’s syndrome and their families—and that needs to change.

In Northern Ireland, the incidence of Down’s syndrome is one in 770 births. That shows the level of support needed for families, and for us back home. My gut feeling is that the numbers are probably the same over here on the mainland. It is not acceptable to throw PIP at a family and walk away. They need respite care for weeks, maybe longer, and day support classes to give their child routine and something to live for.

I am involved with an organisation called East Coast Day Opportunities. It is run by two ladies, Janine Patton and Llewellyn McClurg, in Portavogie in the Ards peninsula where I live. They worked for 20 years at the Tor Bank special school and were touched by the fact that after their education ended at the age of 18, vulnerable adults were left at home all day, so they fought for a form of funding. I know it is not the Minister’s responsibility—it is not about that—but they are still fighting to ensure that individual young people receive their funding. There should be no battle. Dedicated support should be available to enable families to keep their child at home with them. I think in particular of that family in Newtownards who are under such pressure.

In conclusion, support and succour are needed, and that is what we look to the Minister to provide. Regression must not necessarily mean the end of home care. The only way around this is to acknowledge that we have a hard obligation that we must do better in fulfilling.

[Several hon. Members rose—]