Chris Stephens – 2023 Speech on World Down Syndrome Day

The speech made by Chris Stephens, the SNP MP for Glasgow South West, in the House of Commons on 23 March 2023.

I congratulate the right hon. Member for North Somerset (Dr Fox) on securing this debate, and on the passage of his Act. I enjoyed his contribution this afternoon, advocating for individuals in the Down syndrome community. I assure him that I was at the parliamentary event on Wednesday, and there were people from Scotland down in the Lobby discussing some of those issues. It was a privilege to be there. It is also a privilege to be an elected representative, and one of the privileges that come with that is that we meet those we represent who speak truth to power. On Saturday, my constituent, Danielle Urie, came to see me at my Ibrox surgery. She asked me to participate in this debate, which is why I am here this afternoon. I asked Danielle to write to me about some of the things she wanted to say, and after the exchange I had with the right hon. Gentleman about diagnostic overshadowing, I am afraid that, sadly, there is an example of that coming up.

Danielle is currently going through the complaints procedure with the health service in Scotland to discuss some of this. I asked her, and her son Steven, to go through their experiences, and I will read what Danielle sent to me last night:

“My name is Danielle Urie. If my son Steven could speak, I’m sure this is what he would say. ‘My name is Steven I am 11 years old. From 2019 to 2021 I was diagnostically overshadowed by doctors which resulted to damage in my body that can never be reversed, while sitting in chronic pain and bleeding for two years. I am now left with a permanent stoma and my large bowel being completely removed. During this time I had been treated with no respect, and left with no dignity.’ If Steven was a typical child who could voice for himself I don’t think any of this would have happened. I want you to all know the catastrophic consequences that can happen with diagnostic overshadowing, because it’s real and it happens more than you all think. To have no control on what happens with your child’s healthcare is terrifying . I don’t want my child or any child in fact to be added to the statistics of people with Down’s syndrome dying as a result of being diagnostically overshadowed.”

I want to thank Danielle for having the bravery to write to a Member of Parliament to share that particular experience.

The right hon. Gentleman invited us to talk about what is happening in other devolved nations, and I have some constructive criticisms about what is happening in Scotland. I do not think that everything is wrong with what the Scottish Government are doing, but I have some comments to make. The Scottish Government’s position is that they take a wider view and are committed to introducing the learning disability, autism and neurodiversity Bill as part of their programme for government. There are opportunities there. In delivering the Bill, the Scottish Government want to improve opportunities, outcomes and support for people with Down’s syndrome.

There will be a consultation on the Bill later this year. I will certainly be assisting Danielle, and any others, as a part of that. It will provide an opportunity for people to view the policy options that could be included in the draft Bill, including whether it should establish a commissioner. As part of their scoping work, the Scottish Government ran events with a wide range of Scotland’s disabled people-led organisations and national charities. The Scottish Government are working towards a human rights-based approach to ensure the Bill is fully co-designed with people who have lived experiences. It is very important, when shaping legislation, that people with those lived experiences are involved from the outset.

I would like to see the words “Down’s syndrome” included in the title of the Bill. I think that would be welcomed by those who came down from Scotland to the event in Parliament on Tuesday. Why do I think that is important? People with Down’s syndrome are more likely to be born with a heart condition and more likely to get leukaemia. People in the Down’s syndrome community are more prone to infections and thyroid problems, and more susceptible to eye and hearing problems. We want to ensure that those with Down’s syndrome get extra health checks, for example, and have access to speech therapy. It is very important that people with Down’s syndrome have those opportunities. Those are some of the reasons why I want the Down’s syndrome community in Scotland have the words “Down’s syndrome” in the title of the Bill. I will be working with Danielle and others to ensure that that is the case.