Health and Care Act 2022 (Consequential Amendments) Regulations 2025

Lord Kamall Excerpts

Thursday 4th December 2025 Grand Committee

[Baroness in Waiting/Government Whip (Baroness Blake of Leeds) (Lab)]

My Lords, these technical regulations will ensure that the Down Syndrome Act 2022 is up to date with current NHS structures. There are an estimated 47,000 people in the United Kingdom with Down syndrome. Despite existing legal duties, individuals with Down syndrome continue to face significant challenges in accessing the care and support they need. This Government are determined to break down barriers for people with Down syndrome and other disabled people. The Down Syndrome Act 2022, alongside the broader aims set out in the Government’s 10-year health plan for England, will help us to achieve this.

I will begin by outlining the requirements of the Down Syndrome Act. The Act requires the Secretary of State for Health and Social Care to issue guidance to relevant authorities across health, social care, education and housing on the actions they should be taking to support the needs of people with Down syndrome. On 5 November we launched a public consultation on draft guidance under the Down Syndrome Act. We recognise the importance of ensuring that our documents are accessible, and Easyread versions of the draft guidance and survey questions have been made available so that everyone is able to make their voice heard. People can respond to the survey online, via post or by email, according to their individual preferences and needs.

The draft guidance consolidates and raises awareness of the practical steps that relevant authorities should take to meet the needs of people with Down syndrome. Additionally, it helps to clarify the support and services that individuals with Down syndrome can expect to receive. We expect that the guidance will not only improve support for people with Down syndrome but benefit those with other conditions or a learning disability who have similar needs.

This Government are committed to working with disabled people to ensure that their views are at the heart of what we do. The development of the draft guidance involved significant engagement with people with lived experience, as well as organisations that support them. The consultation offers another chance for these communities to express their views.

For the guidance to deliver the improvements we want it to, effective local implementation will be essential. On 9 May 2023, NHS England published statutory guidance that says that every integrated care board should identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interests of people with Down syndrome. The guidance also says that each ICB should have a designated lead for learning disability and autism, and for children and young people with special educational needs and disabilities. Collaboration between ICB leads and other partners across the integrated care system will be crucial. The ongoing legislation will help us assess whether the guidance is clear and informative for relevant authorities in meeting their legal duties to support people with Down syndrome. We will carefully consider all feedback to ensure that the final guidance is fit for purpose.

I will now explain the changes that these amendment regulations will make. The regulations are designed to bring the Down Syndrome Act in line with changes to NHS structures made by the Health and Care Act 2022. Under the Down Syndrome Act:

“Relevant authorities must have due regard”


to the final statutory guidance

“in the exercise of their relevant functions”,

but the Act does not create any new functions beyond this duty. The Schedule to the Act specifies which authorities must have due regard to the guidance and the functions to which it applies.

The regulations will amend this Schedule, replacing outdated references to clinical commissioning groups with integrated care boards and updating references to the National Health Service Commissioning Board with NHS England. This is an important technical change, as the Health and Care Act 2022 abolished CCGs, replacing them with ICBs, and renamed the National Health Service Commissioning Board as NHS England.

For authorities not listed as relevant authorities in the Schedule to the Down Syndrome Act, the guidance will not be statutory, meaning that they are not legally obliged to have due regard to it. These amendments will bring ICBs and NHS England within the scope of the Act’s requirements, providing clarity and helping to ensure effective implementation. The regulations also align legislation with NHS England’s statutory guidance on ICB leads for Down syndrome. ICB leads are responsible for implementing the guidance, and it is therefore essential that ICBs are referenced in the legislation.

It is important to note that the final guidance under the Down Syndrome Act will not be published until after these amendment regulations come into force. Our intention is to publish the guidance before the planned abolition of NHS England comes into effect. However, we recognise that other ongoing government reforms may affect the timing and content of the final guidance. To maintain accuracy and relevance, the guidance will be kept under review and updated to reflect new policy and legislative frameworks as necessary.

A practical consideration is the timing of these regulations. They are drafted to come into force the day after the day on which they are made. This will ensure that the Down Syndrome Act duty to have due regard will apply to the correct authorities as soon as the final guidance is published. The regulations will not have any material effect until the final guidance is published, so we do not believe that further public engagement or notification is needed at this stage.

By making these important and timely updates to the Down Syndrome Act, the regulations before the Committee will offer vital assurance that guidance is implemented effectively and in the spirit intended when the Act was passed. This supports our aim to improve life outcomes for people with Down syndrome and ensure that they receive the care and support they need to live the lives they want to. I beg to move.

[Lord Kamall (Con)]

My Lords, I thank the Minister for setting out the purpose of these regulations. I reflect that in politics there are times when you have some difficult days, but there are also days when you feel it is worth while. I remember when we passed the Down Syndrome Act. I was a Health Minister at the time, and it was one of the most rewarding days I have had as a politician. The credit was not to me; it was to all the legislators who got involved, as well as the many charities, but it is at such times that you feel the work we do here is incredibly worth while.

As the Minister explained, these are technical measures, and we understand that they update references in the Down Syndrome Act 2022 to reflect the changes in the Health and Care Act. As the Minister said, this particularly concerns the establishment of ICBs, or integrated care boards, to replace the clinical commissioning groups. Clearly, the current wording is out of date. For that reason these are sensible regulations, and we are obviously happy to support them. We also welcome the Government’s commitment to help those with disabilities and learning disabilities, which the Minister outlined.

While the changes are technical, they take place against a backdrop of significant structural change. Only yesterday I was contacted by the Minister to discuss some of the changes that will happen when NHS England is abolished and where some of those responsibilities will lie—I understand that there will be a Bill before Parliament.

The Government have announced plans to abolish NHS England by April 2027, but there is as yet no clarity on when the required health Bill will be introduced—I hope we can get something on that—and how the statutory functions under the Down Syndrome Act will be transferred or continued. I completely appreciate that these are early days, but I wonder whether the Minister can answer now or in writing what input there has been and what the thinking is behind transferring some of these statutory functions when that restructure takes place. We would welcome some reassurance that the duties currently held by NHS England ICBs in relation to the Down Syndrome Act will be maintained until the future health Bill provides a new framework. I think that is obvious, but we need some sort of reassurance. We believe that people with Down syndrome and their families deserve that certainty and want to make sure that they are not disrupted by the organisational change.

We also note that the Explanatory Memorandum confirms that there is no statutory review clause for these regulations and, while the technical amendments themselves are straightforward, the absence of a formal review means that there is no mechanism to ensure that these provisions are revisited. I understand that the Minister said that they have come to a stage where they do not necessarily believe that further consultation is required, but I just wonder about some of the reviews. The absence of a formal review could mean that there is no mechanism to ensure that these provisions continue when they are revisited, such as when NHS England is abolished or when the ICBs’ responsibilities are altered. We want to ensure that the statutory duties continue and so we would welcome some clarification on that. Also, how do you monitor the continued effectiveness of statutory guidance and make any more adjustments if required?

Finally, we note that the consultation is ongoing and welcome the fact that the Government have continued to engage with stakeholders throughout this period, ensuring that the guidance remains practical and responsive. I understand that it might be felt that there is no need for any further consultation because all views have been heard, but I think that would give some reassurance in case there are views that need to be heard and have not been. We may say with certainty that there are no more views, but we just do not know what will happen in the future. Also, both the Health and Care Act 2022 and the Down Syndrome Act mandated responsibilities for the ICBs but there is a difference between having responsibilities and ensuring that they are carrying out those responsibilities, and how we monitor that.

Aside from those questions, we support these regulations. We recognise their technical purpose and necessity. At the same time, we hope that the Government will provide reassurance regarding the transitional arrangements and the ongoing oversight of statutory functions so that the objectives of the Down Syndrome Act 2022 are fully realised for the people it is designed to support. We recognise that when the Act was passed it was only the first step to make more people in the system aware and make sure that they are aware of their statutory duties. I am not going to comment on the merits of the changes that are coming—some are positive and some will cause concerns—but we have to ensure that those statutory functions continue so that people with Down syndrome continue to be served in the way that the Act was originally intended. I look forward to the response from the Minister.

[Baroness Blake of Leeds (Lab)]

I thank the noble Lord, Lord Kamall, for his very constructive comments. I completely agree that we have some difficulties with Bills moving across but we are absolutely committed to improving services for people across the country who have significant needs and we are pleased to update noble Lords on our progress. He quite rightly reflected that we are going through a period of structural change, but I hoped I outlined in my opening remarks that that should not get in the way of progress on this. I think that there are enough checks and balances in place to make sure that we have an open door for comments to come in.

In particular, we have a set process for the current legislative framework. A clear consultation framework has been laid down with specific timings, explaining how that will all fit together with the legislative changes. The most important reassurance that the noble Lord asked for is that we will keep the guidance under review and ensure that we accommodate any changes or lessons learned. In my view, consultation needs to be a live experience; it cannot be done just once and put in the history books. I hope that that gives him the reassurance that he needs.

I also take this opportunity to reaffirm that our absolute aim, which I know is shared by the noble Lord, is to improve the lives of people with Down syndrome and people with other conditions. Of course, this is a Private Member’s Bill, which brings its own strictures around how it can be covered. I emphasise again that we will achieve this by publishing guidance under the Down Syndrome Act. We hope that the guidance and the process around the consultation will continue to raise awareness and improve our understanding of the needs of people with Down syndrome. The progress that has been made has been significant and I place on record our thanks to all the organisations and people who have raised the profile of Down syndrome and done such an incredible job. It is important that all relevant authorities are brought together to continue to deliver that effective care and support, regardless of NHS structures.

I hope that I have given the necessary assurance that the guidance will be implemented as intended. With that, I thank noble Lords for their attendance and the noble Lord, Lord Kamall, for his contribution.