Contribution
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.