Down’s Syndrome

Graham Stuart Excerpts

Wednesday 19th March 2025 Westminster Hall

[Graham Stuart (Beverley and Holderness) (Con)]

I beg to move,

That this House has considered Down’s syndrome.

It is a pleasure to serve under your chairmanship, Mr Turner. I assume that the Minister responsible for this area of policy is still the Minister for Care, the hon. Member for Aberafan Maesteg (Stephen Kinnock)—the Minister for Secondary Care is nodding. I understand that he has to be somewhere else, but it is great to see the Minister in her place.

I organised the debate to call on the Government to implement the Down Syndrome Act 2022, which received Royal Assent three years ago, as Members will be interested to note. Here in the mother of Parliaments, an Act was passed with the democratic engagement of Members from both sides of the House, but three years later it has still not been implemented. It is therefore about time that it was; we need it.

The first requirement—the first command—of the Act is that the Government should issue guidance because of the specific needs of people with Down syndrome. They were supposed to issue such guidance for local authorities, health authorities, education authorities and everyone else engaged in the support of people with Down syndrome.

Various versions of draft guidance have been produced, but none of them even completely covered what was required, let alone adequately. In 2022, the then Minister for Care and Mental Health, my former right hon. Friend the Member for Chichester, assured us that the guidance would be “fit for purpose” so we can ensure that people with Down syndrome can access “the support they need”, and that the final guidance would be published in the next year. The previous Government did not fulfil that pledge, and as we sit here today, people with Down syndrome still have not seen that historic Act fully in force.

As I said, the draft versions of the guidance so far, according to my understanding—although I do not claim any great expertise—are flawed in a number of ways. Instead of recognising the unique needs of people with Down syndrome, they simply reduce Down syndrome to a subset of a type of learning disability. That limited perspective does a disservice to those with Down syndrome.

For instance, individuals with Down syndrome often require tailored speech and language therapy, yet the most recent version of the guidance, published in December, makes only vague references to specialist therapy. My friend, my former right hon. Friend Sir Liam Fox, who was the driving force behind the Act, put it perfectly. He said:

“This legislation was specifically for those with Down Syndrome as a definable collection of predictable medical conditions and specific life challenges.”

The Act says that it is

“to make provision about meeting the needs of persons with Down syndrome; and for connected purposes.”

In trying to cater for all individuals with learning disabilities, the guidance misses the mark, failing to provide for the very people it was meant to support when the Act received Royal Assent three years ago.

There are reasons to be optimistic. The Prime Minister has rightly pledged to lead a Government of builders, not blockers. Members on both sides of the Chamber, from all political backgrounds, can all stand united in a shared consensus that the guidance needs to be built and issued, and that we need to get the blockers out of the way. We can agree that people with Down syndrome must be recognised as having specific needs, not just generic ones, and that support must be in place to ensure that they have equal access to opportunities to thrive in all aspects of life.

What is truly disappointing is that the blockers of progress are not really elected representatives or indeed Ministers, but, I fear, civil servants—those entrusted with carrying out the will of Parliament. Too many of them have obstructed the efforts of Ministers in two different Governments to implement the Act. Despite repeated promises, we still have not seen the creation of an effective cross-ministerial taskforce. I hope that the Minister will comment on that, because if there is blockage and resistance within the Government machine, Ministers need to come together. There would not have to be a permanent taskforce, but there should be one, two or perhaps three meetings at maximum where Ministers get together and ensure that the will of Parliament is brought to fruition.

Engagement with key stakeholders has been less than adequate. When the stakeholder group was formed to lead on this work, there was no consultation with Sir Liam Fox, the promoter of the Bill that became the Act, or with Rachael and Ken Ross, the founding officers of the National Down Syndrome Policy Group, who also should have been included, and who were a driving force behind the thinking around the Act. That is not good enough—it is not a party political point. The Prime Minister has my full support to ensure that the Minister here today and her colleague the Minister for Care are empowered to do what they were partly appointed to do, which is to fully implement the Act.

I will say a little more on Down syndrome, which is a genetic condition caused by a chromosomal anomaly. While most people have 46 chromosomes, individuals with Down syndrome have three copies of chromosome 21 in each cell, rather than two. There are an estimated 47,000 people living with Down syndrome in the UK, making it the most common chromosomal condition. The good news is that people with Down syndrome are achieving more than ever before: attending mainstream schools, gaining meaningful employment and making invaluable contributions to our communities, as well as living longer.

There is a risk, however, that we see that progress as a reason to rest on our laurels. Instead, it shows the huge potential of people with Down syndrome, if only we can unlock it, and the urgent need to do more. There should be no limit to our ambitions for people with Down syndrome, which is why we should not wait one day more than we need to in order to deliver the guidance promised in the Down Syndrome Act.

The first step towards meaningful change is the improvement of healthcare. People with learning disabilities die, on average, 24 years younger than those without, and are twice as likely to die from treatable conditions. Whether due to significant delays in diagnoses, unsafe hospital discharges or poor co-ordination between the NHS and other services, one thing is clear: many of those deaths are preventable. Doctors certainly do not mean to harm people with Down syndrome. Instead, it is likely that poor healthcare results from a lack of specific knowledge and training needed to give people with Down syndrome the tailored support that the condition requires.

Following the passage of the Act, NHS England issued statutory guidance in 2023, mandating that every integrated care board appoint a named executive lead at board level to drive better outcomes for people with Down syndrome. That was to provide accountability within the system, so we could say that the Ministers are responsible, not civil servants. However, in the implementation —in the delivery on the ground across the country—of course civil servants are responsible. That is why it was an explicit part of the campaign around the Act, and an explicit promise from a Minister at the Dispatch Box, that we would see people appointed—not so that they could be hidden, but so they could be publicly available, contacted and asked what they are doing within their area.

That was so that we could challenge not only the health system, but schools on what they are doing and why, in so many parts of the country, a Down syndrome child is automatically assumed to need to go to a specialist school when a lot of the evidence is they do better in mainstream—but only, of course, if the people in the schools have been given the support and skills to deliver that improvement. A few days ago, however, when I sought to find out who those named accountable individuals are to allow the Down syndrome community to hold the Government and the system to account, I was able to find a publicly nominated lead in only three of the 42 ICBs in England, and two of those leads are called David Jarrett.

I ask the Minister, what is going on? Can we make sure that those leads are publicly named and prominent on the websites of ICBs; that lists are issued and kept up to date; and that everyone in the Down syndrome community can easily find out who is responsible for the delivery of those services? That would ensure that not only health, but the wider community of public services is a servant of people with Down syndrome, rather than turning a person with Down syndrome into a supplicant.

After healthcare, I turn next to education, which is crucial to the life chances of people with Down syndrome. As I have said, research suggests that people with Down syndrome often achieve better outcomes in mainstream education than in specialist schools, provided that it is appropriate for their specific needs. Officials in the Department for Education are best placed to offer guidance on that, which highlights the importance of an effective cross-ministerial taskforce.

The Minister will have already discovered in her relatively short time as a Minister—we all know what it is like—that Departments other than where such Acts are made tend to be quite resistant to them. Sometimes the only way to cut through and make sure that sufficiently senior civil servants take on board these Acts of Parliament and do what they are obliged to do on a statutory basis is for Ministers to be called together to issue such an instruction and push the system to do what it is supposed to do. Otherwise those Departments will sit in their own lane, following the particular priorities of their Secretary of State, and utterly ignoring their statutory obligation to deliver on an Act of Parliament.

Some progress has been made, but there is more to do. Statistics from NHS Digital reveal that only 6% of working-age adults with learning disabilities who receive long-term social care are employed. In other words, 94% are not. When we meet the people who are and see what they can do, we ask, how many more are there? If only we put in place the right co-ordinated system, how many more could have much more fulfilling lives?

We should get the incentives aligned. If there are fears now about a person with Down syndrome losing benefits, it might not be them deciding—they may not even be spoken to—but members of their family or their social worker might decide, “Oh, it is best to take no risks and just keep them on benefits,” rather than supporting them into a job where they can be full members of society, contribute and benefit from that activity.

Even more troubling, 68% of those who are employed work less than 16 hours a week. Those figures are not just numbers; they reflect the deep systemic barriers that still limit opportunities for people with Down syndrome in the workforce. Despite a range of initiatives, it is clear that we need stronger, sustained efforts to ensure that people with Down syndrome can access fulfilling long-term employment. Only then will we truly break down the barriers to their independence and potential. I hope that it is by now clear to the Minister why we must break down those barriers, and why it is critical that the will of Parliament, in the form of an Act of Parliament that is now three years old, is upheld and implemented, and that change is delivered without further delay.

The time for action is now, so I would be grateful if the Minister could answer the following questions. When will the promised cross-ministerial taskforce be created? At the very least, could she speak to her colleague the Minister for Care and push for one? I know that it is hard to get Ministers to turn up for some other Department’s cross-ministerial taskforce, so it often takes personal contact, an agreement that it is not going to run on forever, and someone saying, “Look, this is important. Let’s get this over the line. Please come along.” We need to get the right Minister at the right time, with sufficient seniority around the table and a real will to enact change and make a difference. If that could come out of this debate, it would be fantastic.

Will the Minister ensure that the consultation group contains only Down syndrome-specific organisations, so that the legislation supports people with the condition, as is set out in the Act? There has been a tendency to open up consultations to everybody engaged with learning disability, so people with little or no understanding of the specifics of Down syndrome have been engaged in the consultations run by civil servants. The whole thing has run into the ground and lost the specific focus of the Act.

The National Down Syndrome Policy Group informed me that the draft guidance issued to sector groups contained significant omissions. I always find it much easier to commit to meetings on behalf of colleagues than to commit myself, so I hope I can tempt the Minister to do so. Will the Minister commit the Minister for Care to meeting Rachael and Ken Ross—I would also love to attend—as soon as possible? They are the founding officers of the National Down Syndrome Policy Group, and they do exceptional work for people with Down syndrome. They are in the Public Gallery alongside Millie, who recently gave evidence to the all-party parliamentary group. Millie is always available to correct any of us when we get our policies wrong, as she will attest. Given that it has been three years, will the Minister provide a clear date—an aspiration from the Government —for when we will get comprehensive guidance? When can we get it ready, in a final version, to go through all the sign-off processes of Government? When can we expect it to be officially issued? Those are not just procedural questions; they are vital to ensuring that the promises made to people with Down syndrome are delivered, and that we move forward with the urgency and specificity that this issue demands.

Hon. Members in this Chamber will speak for themselves, but I am sure they all stand with the Minister in this effort. On behalf of the 47,000 people with Down syndrome across the country, we urge the Minister to ensure that a suitable and proper version of the guidance is produced quickly, and that is truly reflects the experiences and needs of people with Down syndrome, specifically. If alongside that exercise someone wants to produce separate, more generic guidance, that is fine; but can we ensure that the guidance described in the Act is delivered for people with Down syndrome, and that it is published and fully implemented without delay?

A great opportunity lies ahead for all of us. We can be part of delivering meaningful, lasting change for thousands of people, now and for generations to come. I am sure support will come from hon. Members on both sides of the Chamber, and I hope we will send the Minister out from this debate determined to ensure that her colleague, the Minister for Care, does the right thing.

--- Later in debate ---

[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.

--- Later in debate ---

[Graham Stuart]

We have had 10 speeches in this debate, which is fantastic. I think we all agree that the stand-out speech was that of the hon. Member for Thurrock (Jen Craft). It is great to have the whole House coming together in this way—a number of colleagues focused on that—and to have the pledges from the Minister. I think we can move forward with enthusiasm and engage with the Minister for Care. Led by the co-chairs of the APPG, my right hon. Friend the Member for East Hampshire (Damian Hinds) and the hon. Member for Mid Cheshire (Andrew Cooper), we can ensure that we have a streamlined meeting or meetings to ensure that the Minister’s time is best used, the voices of the community are heard and the guidance is swiftly produced.

Question put and agreed to.

Resolved,

That this House has considered Down’s syndrome.