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The Minister for Secondary Care (Karin Smyth)
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.
Graham Stuart
Several colleagues have mentioned the need for specificity—if the Minister is coming on to that, then great. Would it be fair to say that it is the intent of the Government—I am not looking for cast-iron promises, because we know how challenging these things are—that we should see the guidance issued before the end of this year, all things being well?
Karin Smyth
We want to ensure that the guidance is published as soon as possible, and we appreciate patience while we make that happen. It is important that we continue to work with people and organisations with lived experience to develop the guidance. We hope that the update we provide will assure everyone of the priority attached to that important piece of work.
As for the scope of the guidance—with regard to other genetic conditions or learning disability—a commitment was made during the Bill’s passage through Parliament to consider the links and overlaps with other genetic conditions and/or a learning disability. Therefore, the guidance will be Down syndrome-specific, in line with the Government’s statutory duty—which we are clear about—under the Act. It will also include references to where it could have wider benefit. We want to take the opportunity of the guidance to help as many people as possible and to provide examples of good practice to support relevant authorities to implement improvements in practice.
On employment, we heard through engagement with our partners that employment is crucial to improving life outcomes. People with Down syndrome can bring many skills and strengths to the workplace. We want every person with Down syndrome who can and wants to work to have the right support and opportunity to do so. That is why a dedicated chapter on employment will be included in the guidance.
On implementing the guidance, we know that ultimately much depends on how the guidance is put into practice across our communities. To support implementation, NHS England published statutory guidance on 9 May 2023 to require that every ICB had a named lead for Down syndrome. I think that the right hon. Member for Beverley and Holderness said that there was only one, and I recognise the name, because it is my own area—well done, them. That might not have happened, but it was said in 2023.
The executive lead on Down syndrome will lead on supporting the chief executive and the board to ensure that the ICB performs its functions effectively in the interests of people with Down syndrome. We recognise the importance of ensuring that people with Down syndrome are able to make complaints, if they have concerns about the quality of and access to care. We expect the named lead to ensure that concerns are acted on at the local level.
Karin Smyth
I am sorry, but I think I have only a minute to go.
This week has been a powerful reminder of how far we have come regarding awareness of Down syndrome. It has also made us reflect that much more remains to be done. When the guidance is launched for public consultation, we will welcome Members’ support to ensure that the communities they represent are aware of it and can share their views.
I will just highlight the issue of regression, which my hon. Friend the Member for Thurrock mentioned. The guidance will deal with specific health needs, and regression will be part of that.
I thank the right hon. Member for Beverley and Holderness again for securing the debate and other hon. Members for joining the discussion. In particular, I thank the co-chairs of the APPG, the right hon. Member for East Hampshire (Damian Hinds) and my hon. Friend the Member for Mid Cheshire (Andrew Cooper), for their work, and everyone who works tirelessly to improve our support systems and services. It is incumbent on us all, working with people with Down syndrome, their families and carers, to get this done.
I appreciate that a number of requests have been made for different individuals and groups to meet my hon. Friend the Minister for Care. He is keen to do that. I will not make specific commitments, although the right hon. Member for Beverley and Holderness tempts me to do so, but I will make the commitment that my hon. Friend will be in touch via his office with colleagues who made such requests, to ensure that we make best use of the time and bring people with us on the implementation of this guidance, which is so crucial—I remember my time on that Bill well. I am thankful for the opportunity to be part of the debate this afternoon.