Down Syndrome Act 2022: Local Authority Guidance

Motion made, and Question proposed, That this House do now adjourn.—(Taiwo Owatemi.)

I feel so strongly about the subject of this debate because of one particular campaigner in my constituency, Millie-Anna. Her commitment to raising awareness and campaigning on a range of issues for people with Down syndrome is inspiring. She is a leading light for people with this condition everywhere.

The main thing I have learned from my discussions with Millie since becoming her Member of Parliament is that, when making policy that affects people with Down syndrome, the best thing that the Government can do is listen to those who actually live with it, as well as their families and groups such as the National Down Syndrome Policy Group. That is why I put in for this debate today: to urge the Minister and her Department to listen to groups such as the all-party parliamentary group on Down syndrome and the National Down Syndrome Policy Group, and to make publishing the Down Syndrome Act guidance, which this Parliament has compelled the state to do, a Government priority. The guidance is essential for making sure that those with Down syndrome are treated with the respect and dignity that they deserve across a range of public bodies—from the NHS and the school system to other local authority services such as housing. If done well, it could set the gold standard for publishing other guidance for those with unique conditions.

Importantly, the guidance must be specific to the unique needs of those with Down syndrome. People with Down syndrome may sometimes have learning disabilities, but Down syndrome is not a learning disability. In my view, the civil servants are seeking an easy life by mopping up the issue with everything else, but that is not what Parliament has told them to do. The Secretary of State for Health and Social Care rightly called out NHS England as a public body that served the institution rather than patients and the instructions of this House, but frankly, when it comes to this matter, the Minister needs to look at the Department of Health and Social Care itself.

In the Department’s call for evidence, it was mooted that the guidance could be extended to cover those with broader learning disabilities. That was never the purpose of the Act and risks watering down the legislation so far as to make it meaningless, particularly given that the call for evidence also made it clear that the needs of those with Down syndrome are distinct. The extension of the guidance would undermine the Act’s whole reason for being. Will the Minister commit to separating learning disabilities from the guidance completely and instead add a supplementary document? That would be a way of pleasing all interested parties without watering down the guidance.

Currently, only 25% of those with Down syndrome are included in mainstream secondary schools. Some 94% are unemployed, and sadly their life expectancy is just two thirds that of the general population. If we provide authorities with specific guidance, I really believe that we can move the dial and that those with Down syndrome can play a full role in society and be afforded the opportunities that they deserve.

Specific guidance has the power to improve health outcomes by directing NHS professionals, and it will improve school outcomes, as it will stop those with Down syndrome from automatically being pushed towards specialist schools when they may benefit from being in the mainstream. As part of that, I hope that the Minister will be able to confirm that professionals delivering services to people with Down syndrome will have to undertake Down syndrome-specific training and that that will be included in the forthcoming guidance.

The publication date for the draft guidance has faced multiple delays; the most recent extension—that it should be published by Easter—has been postponed yet again. The new target is set for the summer. Sir Liam Fox’s Act got on to the statute book as far back as 2022, but still families are left waiting. I say it again: Parliament has given its instruction and the relevant officials should get on with it. Unfortunately, today is just the latest in a long list of debates, questions and letters from the all-party parliamentary group and the National Down Syndrome Policy Group, which time and again have been brushed aside and ignored.

Following the passing of the Act, each integrated care board in England has been required to have a board-level executive lead for Down syndrome, who is accountable for ensuring that the ICB meets its duties and supports people with Down syndrome effectively, including implementing the Down Syndrome Act 2022. However, as my right hon. Friend the Member for Beverley and Holderness (Graham Stuart) pointed out last week in his Westminster Hall debate, there are currently only three listed leads for the 42 ICBs in England. Progress has been far too slow in all these areas. That, frankly, is an affront to the democratic process and reflects badly on this country.

Although I recognise the difficulties in transitioning from one Government to the next, I feel strongly that this issue needs to be at the top of the list of the Minister’s priorities. This is about a binding statute and it is really not a party political matter. Even when submitting my application for this debate to the Table Office, my original wording was flagged because the commitments were officially made under the previous Government. I am sure that that was some kind of administrative confusion, but will the Minister commit to the official record that bringing the guidance forward is also a policy of this new Government?

When Sir Liam’s Act was passed, it was a landmark piece of legislation. It gave so much hope to families across the country and sent the message that their campaigning and hard work had been rewarded but, as is so often the case, MPs now face an ongoing battle with the grinding Whitehall machine.

As well as specific guidance being necessary, the Act creates accountability in public institutions. I am afraid that the Minister’s officials are again dragging their feet in their own self-interest. They have never wanted to set the precedent that the public could find someone accountable and responsible for their care. God forbid anybody in the British state should be held accountable, but Parliament has legislated to give instructions, and I want my constituents with Down syndrome to know who is responsible for their care.

In getting on with it and properly capturing people’s unique needs in the specific guidance, the Government need to engage with the right people. However, of the key stakeholder groups tasked with developing this guidance, only three of the 11 organisations involved are specifically focused on Down syndrome and are expert in the condition.

Furthermore, the civil service has admitted in correspondence that it is unsure of the specific needs of those with Down syndrome. This is understandable, but why not listen to those who do understand, those who are part of the community and the Down syndrome APPG? Why not listen to people like Millie Anna?

The APPG and the NDSPG have been pushing for a meeting for six months, and I am afraid to say that each time they have been rebuffed with a generic response. I hope that my raising this issue today, following last week’s debate secured by my right hon. Friend the Member for Beverley and Holderness, will be the wake-up call the Government need to take this issue seriously.

Sir Liam has contacted the Chair of the Health and Social Care Committee to request an inquiry into this ongoing issue and to explore the reasons for the delays in the publication of the guidance. This is something I wholeheartedly support. From my discussions with the APPG, I know it has found that the Minister’s response to last week’s Westminster Hall debate left many unanswered questions, so I hope that bringing this topic back to Parliament today has given the Minister a chance to develop her response.

I am afraid to say it is also notable that the Minister responsible for this area of policy has been absent from both this debate and last week’s debate, and I would be grateful if the Under-Secretary of State for Health and Social Care, the hon. Member for West Lancashire (Ashley Dalton), will pass on my asks.

Given the delay and the treatment of the Down syndrome community, which has been far from ideal, I now think that a meeting with the Secretary of State is required to reassure those with Down syndrome that the Government have not forgotten them. Will the Minister commit today to arranging such a meeting in the very near future?

We need to get this guidance published as a priority, but only if it reflects the true intentions of Sir Liam’s original Bill—specific to Down syndrome and with proper accountability. I thank the Minister for making the time today. I look forward to her response on all these issues, particularly on: arranging a meeting; separating learning disabilities from Down syndrome in the guidance; the current lack of ICB leads; and a timeline for the publication of the guidance associated with the Act.

I thank the hon. Member for Windsor (Jack Rankin) for securing this debate on such an important topic. I am also grateful to him for his work with the all-party parliamentary group on Down syndrome.

People with Down syndrome should have the same opportunities to participate fully in society like everyone else, but we know this does not always happen. There is a pressing need to raise awareness of the needs of people with Down syndrome and how they can be met. While every person with Down syndrome is a unique individual, they often face common health risks.

For example, we know that almost half of children with Down syndrome are born with a heart condition. We also know that people with Down syndrome may need additional support with their speech, hearing or vision. And as the average life expectancy of a person with Down syndrome continues to rise—an increase I am very pleased to see—this means that more people require additional support in later life. This may be additional support with new, age-related health needs, as well as increased demand for social care services.

This Government are committed to ensuring that all people with Down syndrome receive the care and support they need to lead the lives they want in their communities, and we are taking action to achieve that by implementing the Down Syndrome Act. The Act lays the foundations to ensure that every person with Down syndrome can live a full and fulfilling life through accessing the health and care services they need, receiving the right education, securing appropriate living arrangements that work for them, and being supported into employment. We recognise that there is still much to do to achieve that, but I can assure the hon. Gentleman and the House that the Government are working on the implementation of the Act as a priority.

The Down Syndrome Act requires the Secretary of State for Health and Social Care to give guidance to relevant authorities in health, social care—including local authorities—education and housing services on what they should be doing to meet the needs of people with Down syndrome. Earlier this month, Minister Kinnock wrote to sector partners and the all-party parliamentary group on Down syndrome with an update on the development of the guidance, including the Government’s plan to put the guidance out for consultation by the summer. That followed a roundtable on 26 November, which Minister Kinnock—

Order.

Oh, sorry!

Twice!

I’m so sorry!

That followed a roundtable on 26 November, which the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock) convened to discuss with partners how we can improve life outcomes for people with Down syndrome and the opportunities that the guidance presents in support of that.

We appreciate that many of the issues that have been raised are borne out of a desire to ensure the guidance is as effective as possible and published as soon as possible. We know just how important the guidance is. I can assure the hon. Gentleman that a huge amount of work has been, and continues to be, carried out to develop the guidance. And we, like others, want to make sure the guidance is fit for purpose and impactful.

It has been vital that people with lived experience, and the organisations that work to support them, are involved at every stage of the work to develop the guidance. A range of sector engagement has taken place. That includes a national call for evidence, partner working groups, and a review of evidence to gain a better understanding of the specific needs of people with Down syndrome. Throughout the process, there have been differences in opinion on the scope of the guidance and how it should be drafted. Officials have worked hard to build consensus on these issues, but, as I am sure Members can appreciate, it is not always possible to resolve differing opinions quickly, especially on a topic as important as this. While that means the development of the guidance has taken longer than we all had hoped, it is only right that the issues are given the due consideration they deserve. The Minister responsible set out his position on the issues at hand in his recent letter to sector partners.

Our position remains that the guidance will be Down syndrome-specific, in accordance with the Government’s statutory duty under the Act. It is our intention to include references to where the guidance could have wider benefit. That is in line with the commitment made during the Bill’s passage through Parliament. This is not about moving the focus away from Down syndrome. The guidance is about meeting the needs of people with Down syndrome. It is about taking the opportunity, through the guidance, to help as many people as possible. Officials will continue to work with partners to ensure the guidance has the maximum benefit for all communities involved.