Down’s Syndrome

Luke Evans Excerpts

Wednesday 19th March 2025 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

It is a pleasure to serve under your chairmanship, Mr Turner, and to respond in this debate. I credit the now Minister, the hon. Member for Bristol South (Karin Smyth), who said, when speaking about this issue in January 2022:

“Our constituents expect us to see guidance and perhaps be part of scrutinising it, raising objections and problems and improving it—that is the role of a Member of Parliament”.––[Official Report, Down Syndrome Public Bill Committee, 26 January 2022; c. 7.]

We have seen that exemplified here today. I give credit to my right hon. Friend the Member for Beverley and Holderness (Graham Stuart) for all he has done to raise this issue, but he was actually trumped by the hon. Member for Thurrock (Jen Craft), to whom I pay tribute for her ability to speak so openly, so personally and in such an informed way about the issues at hand.

In January 2022, the then shadow Minister closed by saying,

“this is an example of how Parliament and the proper role of Members of Parliament can be made real. That is only for the good of our constituents.”––[Official Report, Down Syndrome Public Bill Committee, 26 January 2022; c. 7.]

I agree with her entirely.

Turning to the debate itself, it is unusual to have unanimous feelings from across the House, but that is what we have heard in this debate. It is an accolade to everyone that we have got this far, but some things are still outstanding, particularly two issues—the progress of seeing the guidance and ensuring that it is accurate and effective. It is important to ensure that the guidance is robust and reflects the needs of the community. We do not want to rush publishing the guidance, which could mean that key issues are not addressed, because it would undermine the efforts of the last three years and fail the very people the Act is aimed to support.

My former colleague, Sir Liam Fox, who has been mentioned here and introduced the private Member’s Bill, has written to the Chair of the Health and Social Care Committee about these reforms; with your permission, Mr Turner, I would like to quote some extracts. He said:

“When the House of Commons unanimously passed the Down Syndrome Act, it felt like a real dawn had arrived for those with Down Syndrome and their families. We were promised new government guidelines covering health, education and social care that would phenomenally improve service provision and provide accountability to service users”.

He said later:

“Despite repeated promises we have not yet seen the formation of an effective cross Ministerial task force. There has been little Ministerial engagement with stakeholders, with many identical letters being sent out in response to demonstrably different queries. Now, three years after the legislation reached the statute book, this is completely unacceptable.”

He finished by saying:

“I believe that it is now time for both Ministers and officials to be held to account for the lack of progress in producing coherent guidelines, something that is regarded as a betrayal by many of those who were so encouraged and inspired by the passage of the Down Syndrome Act itself”.

Therefore, to echo many of the sentiments expressed in this Chamber today, I have some gentle questions about the guidance.

First, though, it was interesting to hear from the hon. Member for Mid Cheshire (Andrew Cooper) that a letter has been sent out, which I welcome. I wonder whether the Minister might take back to the Department the suggestion that a copy of the letter might be placed in the Library, for the public and all of us to see.

For my first question: can the Minister clarify whether the updated guidance will be published, and if so, when? Secondly, will she commit to holding a debate or a statement on the guidance, on having it laid before Parliament? Thirdly, how will the Government monitor compliance with the guidance?

To help with the above, the National Down Syndrome Policy Group, which drafted the original Down Syndrome Bill and worked with Sir Liam Fox and previous Ministers to support its journey through Parliament, has been trying to engage further with Ministers. It has highlighted to me multiple requests for Ministers to meet the APPG on Down syndrome, the policy group and MPs, which have yet to be successful. I echo that call: will the Minister commit today to her fellow Minister meeting with the policy group and the APPG to follow this up?

The theme of World Down Syndrome Day, which is indeed this Friday, is “improve our support systems”. We know that, with the growth in life expectancy for people with Down syndrome, access to social care will be critical. Therefore, can the Minister confirm whether the needs of people with Down syndrome will be considered in the first stage of Baroness Casey’s commission into adult social care? With the Government’s 10-year plan in production, could the Minister outline how Down syndrome will be addressed in the context of that plan?

I look forward to hearing from the Minister about how this Government will build on the foundations of the Down Syndrome Act, and about the strengthening and enabling of support. If we see it through that prism, the world shines brighter when we see people for their abilities rather than their disabilities.

--- Later in debate ---

[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.

[Dr Luke Evans]

Will the Minister give way?

[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.