Contribution
It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate and thank the right hon. Member for Beverley and Holderness (Graham Stuart) for securing this debate, and for giving us all the chance to mark World Down Syndrome Day on Friday. No one has done that better than my hon. Friend the Member for Thurrock (Jen Craft) this afternoon. Her child is the beating heart of her family, and that joy is absolutely with all of us. She has spread that joy today and we are grateful to her.
I am also grateful to the right hon. Member for Beverley and Holderness for his support for the Down Syndrome Act. As he highlighted, I was pleased to support the Act with his right hon. Friend and my constituency neighbour at the time, the former Member for North Somerset, Sir Liam Fox. It was a marvellous thing to be part of. As my hon. Friend the Member for York Central (Rachael Maskell) said, it was a simple but quite brilliant piece of legislation. I am always grateful to the hon. Member for Hinckley and Bosworth (Dr Luke Evans) for quoting my comments from different times at the Dispatch Box; hopefully they were all carefully chosen.
This Government want to see a fair Britain where everyone lives well for longer. I absolutely recognise the importance of the Down Syndrome Act in helping to achieve that. The Act gives people with Down syndrome the building blocks they need for a healthy life, and we have heard about some of those today: access to the health and care services they need, receiving the right education, securing living arrangements that work for them and being supported into employment were mentioned by the hon. Member for Carshalton and Wallington (Bobby Dean) and my hon. Friend the Member for York Central, as well as the Lib Dem spokesperson, the hon. Member for Chichester (Jess Brown-Fuller).
By raising awareness and understanding of the needs of people with Down syndrome, we can help ensure that every person with Down syndrome has the opportunity to live a full and fulfilling life. Today’s debate is an excellent opportunity to come together to mark World Down Syndrome Day. I commend those in the Public Gallery, and the many people who have been in contact with or are known to Members. This year’s theme is “improve our support systems”, which is incredibly important. It is something that we are striving to achieve through developing the statutory guidance under the Down Syndrome Act.
We are committed to ensuring that people with Down syndrome receive the care and support they need to lead the lives they want to in their community. However, as we have heard this afternoon, there is significant work to be done to make that a reality. The Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock), is working hard to implement the Act. Under the Act, the Secretary of State for Health and Social Care is required to give guidance to relevant authorities in health, social care, education and housing services on what they should be doing to meet the needs of people with Down’s syndrome.
As Members have highlighted, the Act was formally commenced on 18 March 2024 by way of regulations. That brought into force all the provisions of the Act, and it was a necessary step towards the publication of the guidance. I do not think it has been mentioned today, but shortly after that point we had the general election, and I appreciate that the delays are frustrating for campaigners and people involved. The Minister for Care has written to sector partners and the all-party parliamentary group on Down syndrome with an update on the guidance and next steps. That includes our intention to put the guidance out for consultation by the summer.
Engagement with people with Down syndrome, their families and supporters, sector colleagues and experts has been invaluable throughout the development of the guidance. Over 1,500 responses were received to a national call for evidence, which is being used to inform the guidance, in addition to sector engagement and a review of the evidence to gain a better understanding of the specific needs of people with Down syndrome and how those can be best met by relevant authorities.
On 26 November 2024, the Minister for Care convened a roundtable of partners to discuss how we can improve life outcomes for people with Down syndrome, and the opportunities that the guidance presents in support of that. We are grateful for the collective efforts and insights of individuals and organisations across the country, which have enabled us to make great strides in our development of this important piece of guidance. We recognise that some time has passed since the Act became law in April 2022.