Down’s Syndrome

Bobby Dean Excerpts

Wednesday 19th March 2025 Westminster Hall

[Bobby Dean (Carshalton and Wallington) (LD)]

It is a pleasure to serve under your chairmanship, Mr Turner. I thank the right hon. Member for Beverley and Holderness (Graham Stuart) for securing the debate today and for articulating the key points of the Act so well. I cannot move on without also thanking the hon. Member for Thurrock (Jen Craft) for her inspiring contribution. She really did her community proud today.

This issue came to my attention because I have a constituent called Lucienne who sits on the National Down Syndrome Policy Group and runs a local group called Get On Downs. I was at its annual celebration this morning—we had tea and cake, we threw balls around a ball pit, and I wore funky socks as demanded by the event—unfortunately, you cannot see them, Mr Turner, but I am still wearing them. I got to meet Noah, Lily, Stephen and Charlotte, all people living with Down syndrome and thriving in that loving space. I asked Charlotte what she would like me to say to the Minister, and she said she would like me to tell the Minister that she is fantastic—so I have done that.

I also spoke to parents there, who told me about the relief of having that space, including for themselves, so they could talk to other parents and share experiences. They also had some serious points to make about the Act, which they were all aware of. A common theme was the education system and that the specific needs of Down syndrome children are not being met, even though the smallest of adaptations and interventions can make such a massive difference. Schools are not aware of that and we need to get the guidance sorted for them.

I also heard a story about someone moving on to post-16 education and the demands on them to take maths and English to a particular level, when what they actually need is the vocational skills. They want to become an animal carer and wish they could just have access to a vocational course without the hard maths and English requirements. I also heard about the need for more support to stay in work. Charlotte did Christmas cover in retail, but companies were not looking to keep her on.

There were warm words for Lucienne—or Lu, as she is known—and she was described as a “life saver” for setting up that local group. She has also set up an amazing initiative with the local hospital trust. The healthcare information provided at birth can be daunting, warning about some of the things that parents of children with Down syndrome will have to face. Lu wanted to flip that on its head and provide care packages to new parents of children with Down syndrome that congratulated them and talked about all the joys ahead of them. I want to recognise that brilliant initiative.

It is fitting to give the last word to Lu, and these are the questions that she wants to ask the Minister. What is happening with the guidance, and why the delay? Will the Minister agree to meet the National Down Syndrome Policy Group? Can the Minister reassure us that the draft guidance will be Down syndrome-specific? Lu wanted to labour the point about the specific learning profile that requires specific interventions. She asks, “What is the point in a Down Syndrome Act if it is not specific to people with Down syndrome?”