Down’s Syndrome

Wednesday 19th March 2025 Westminster Hall

17:35

[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Various versions of draft guidance have been produced, but none of them even completely covered what was required, let alone adequately.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.

17:52

[Jen Craft (Thurrock) (Lab)]

It is an honour to serve under your chairship, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this important debate.

Down’s syndrome regression disorder is an aspect of Down’s syndrome that has been, until now, largely overlooked. It affects roughly 1% to 2% of people with Down’s syndrome and usually presents between the ages of 10 and 30. It is a truly horrific condition. People with Down’s syndrome regression disorder change, almost overnight. I met a mum whose son developed Down’s syndrome regression disorder. Overnight, he became non-responsive, uncommunicative and catatonic. She said it was like everything that was him had left.

Young people who previously held down jobs or voluntary positions, and had many interests, hobbies and a love of life, lose the ability to speak, lose continence and retreat into themselves. The change is not gradual; it is stark, unexpected and profound. There is a fundamental lack of awareness of the condition. It is often wrongly diagnosed as early-onset dementia or late-diagnosed autism, even though it does not fit the profile of either of those conditions. There is currently no pathway for diagnosis, and progress is often fraught. Finding a clinician who recognises the symptoms and will treat is, by and large, impossible. However, there is hope: 80% of people who receive the right treatment in a timely manner achieve some prospect of recovery.

I want to be clear: if a typical child who does not have Down’s syndrome stopped eating and taking any interest in jobs overnight, and if they suddenly became catatonic and completely unresponsive, it would be treated as a medical emergency. People whose children have Down’s syndrome, and who have finally managed to speak to the right clinician, have been told, “You need to take your child to A&E.” If it was a typical child, that would be happening, but because that child has Down’s syndrome, it is overlooked. Will the Minister meet with me and individuals affected by this disorder to discuss how we can best create awareness, and what their thoughts are on how we can create a pathway to diagnose and treat it?

I would also like to touch briefly on my reflections as a parent of a child with Down’s syndrome, and what I think would be generally helpful in the space. Many of us feel that some kind of pathway for parents whose child is born with Down’s syndrome would be extraordinarily useful. When their child is born, or when they receive an antenatal diagnosis, they very often think, “What lies ahead? What can I expect? What does my future look like?” Down’s syndrome is the most common chromosomal condition, and we know that 50% of children born with Down’s syndrome will have a heart condition, and there is a higher prevalence of conditions such as leukaemia. By and large, those with Down’s syndrome do not have a very strong immune system—as I know every flippin’ winter, when my child gets cold after cold.

I have had lovely responses and gained a level of knowledge about what to expect from various parts of my child’s condition. We have cobbled that together from speaking to other parents, through WhatsApp groups and Facebook groups, and sometimes from speaking to professionals and support groups. It would be helpful to have that set out officially, so that parents know what lies ahead, what to expect and what to look for.

This is a very small thing, but when people with Down’s syndrome have a fever, their temperature sometimes goes down rather than up. It is really unusual, but it is normal for the condition, and it is quite useful to know as a parent. It is also useful to know how to diagnose things, because people with Down’s syndrome do not present conditions typically, including conditions that can be really awful. Parents have lost children to sepsis because it does not present as it would with a typical child, so knowing how to diagnose it is really useful.

As people transition into adulthood and make those steps into the adult world, it is important to have an idea of how people with learning disabilities and Down’s syndrome can expect to be treated. What kind of things help them to live full and happy lives? As their parents and caregivers, what kind of things should we be encouraging them to take part in? That is extraordinarily helpful to know.

I will keep my speech brief, as I know other Members want to speak, but I will just end by reflecting that Friday is World Down Syndrome Day. In our community, we typically see it is a day of celebration, as well as an opportunity to present a challenge to policy makers. This year, we are asking them to ensure that we have the right support.

People will see this debate who have just received a diagnosis of Down’s syndrome. They might be receiving it today; they might be receiving it antenatally or postnatally. When I received that diagnosis seven years ago, it was a shock. I felt like the carpet had been pulled from under my feet, and I was devastated. I look back at that moment with shame at the thought that I was so devastated at the news of this person who became the beating heart of our family. She is joyous, although she is not always happy. That is a misconception—she is not—and if people say that, I will say, “Oh, did I get a wrong one?” Of course, I did not. She is stubborn—I like calling girls stubborn—she is determined, and she is feisty.

She is also a fantastic dancer. At a community event we went to, I was there as an MP, but she had me up dancing in the middle of the floor. I was not in the background; I was right there, and she dragged me into the heart of it. She is really funny, and she is so kind, especially with her sister. There is a really brilliant statistic that 95% of people who have a sibling with Down’s syndrome think that they have enhanced their life. She has made me a better person, and she has made my husband a better person. When she loves, she loves deeply, and she loves hard. People who meet her share that and feel that love with her.

The brilliant thing is that, if a parent has a child with Down’s syndrome, they join this wonderful community. I have met some of my best friends through that community and we are there to support each other. There are some brilliant groups; I will give a shoutout to Faye and Claire from our local Down’s syndrome group, who welcomed us with open arms and showed us what our life is. We are taking what we call the scenic route, not the quick path. It is a lot better than the casual straight line. Who wants normal? It is boring, and they showed us that joy.

Upwards with Downs in Harlow is a fantastic group that organises so many wonderful events, including a holiday we have been on with people who get it. There is also Downright Excellent in Hackney, and I say to my wonderful friends Charlotte and Kirsty: what a brilliant and fantastic community we have. Happy World Down Syndrome Day—I love all of you. If anyone is ever worried about what the future looks like, come and talk to me, or to any of us, because we can tell you that it is not just going to be okay; it is going to be brilliant.

[Several hon. Members rose—]

[Karl Turner (in the Chair)]

Order. I am imposing a time limit of four minutes. To show us how to do it very well, I call former Education Secretary Damian Hinds.

18:00

[Damian Hinds (East Hampshire) (Con)]

It truly is a pleasure to see you in the Chair, Mr Turner, and it truly is a pleasure and a privilege to follow the hon. Member for Thurrock (Jen Craft)—I do not know if I can. There are times in this place when it is a real privilege to have heard from a colleague, particularly when they share something very personal that helps to inform our democracy, and she has just done that many times over, and I thank her. Indeed, I am sure we all thank her very much for it.

I also thank and commend my right hon. Friend the Member for Beverley and Holderness (Graham Stuart) for securing this important debate. As the hon. Lady said, we are coming up to World Down Syndrome Day. It is already Down’s Syndrome Awareness Week, so it is particularly apt that we should be having this debate.

It is my honour to co-chair, with the hon. Member for Mid Cheshire (Andrew Cooper), the all-party parliamentary group on down syndrome. Down syndrome was not something I knew a lot about beforehand; it just so happens that the co-founders of the National Down Syndrome Policy Group, Ken and Rachael Ross, happened to be constituents of mine. But my God, through that link I have come into contact with the community that the hon. Member for Thurrock was just talking about, which is the most enormously wonderful thing. We had an event a couple of weeks ago over in Portcullis House. There was a flash mob in Portcullis House, there was dancing and there was singing, but there were also challenging speeches from members of the Down syndrome community, who it is always important to hear from directly.

In the APPG, we have heard a number of testimonies about people’s frustration with the education system. I am pleased that Down syndrome is now included as a category in the school census, which means that it is possible to take a more targeted approach, but those issues carry on into employment, as my right hon. Friend the Member for Beverley and Holderness said.

There is so much work to be done, but the Down Syndrome Act 2022, which was carried through by Sir Liam Fox, was a really important milestone and a really important achievement to build on. I do not really have time to say it all, so I will just very quickly commend Sir Liam again for the work he did then and for his continued advocacy today.

I also want to recognise the work of Ken and Rachael and everything they did to support the Act through Parliament, and everything they have done since. That includes their work locally with Portsmouth hospitals on a Down-specific maternity pathway, which I know as a constituency MP; in a completely different way, their work with the British Academy of Film and Television Arts to make sure that the voices of people with Down syndrome are heard in mainstream films; and also their work on special schools and making sure that more children with Down syndrome can be in a mainstream setting when that is right for them. I also want to recognise the work of all the MPs involved, including the Minister, who was on the Bill Committee with Sir Liam Fox to consider his private Member’s Bill.

As my right hon. Friend the Member for Beverley and Holderness said, it is now several years since that Bill was enacted. It is really important that we press on with the guidance and that it is specifically about Down syndrome. That is not in any way to reduce the issues faced by people with a broader set of learning difficulties or disabilities, but this is specifically the Down Syndrome Act 2022, to look at those particular issues and challenges. We need that ministerial cross-departmental taskforce, to make sure that the guidance is as sound as it can be and is produced as quickly as it can be.

I also thank the Minister’s colleague, the Minister for Care, the hon. Member for Aberafan Maesteg (Stephen Kinnock), for his continued engagement. We continue to extend an invitation to him, and to the Minister, to join us in the APPG when they can, to hear further from members of the community about how important all this work is to them.

18:00

[Andrew Cooper (Mid Cheshire) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Turner. I declare an interest as co-chair of the all-party parliamentary group on Down syndrome. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on his comprehensive speech and on securing this debate, which holds immense significance for individuals with Down syndrome and their families, especially as we approach World Down Syndrome Day on Friday. That day was chosen because the 21st day of the third month represents the triplication of the 21st chromosome, which is the cause of Down syndrome. I will focus my comments today on the Down Syndrome Act, a landmark piece of legislation that recognises the unique needs of people with Down syndrome, and the ongoing work to update and implement the guidance that will help bring it to life.

As we have already heard, there are an estimated 47,000 people with Down syndrome people in the UK, yet, despite its being the most common chromosomal condition, people with Down syndrome continue to face barriers to achieving their full potential. That is where the Down Syndrome Act comes in. For the first time ever, we have legislation focused specifically on this community, taking into account the distinct health, developmental and educational needs unique to people with Down syndrome. With the right interventions, many people with Down syndrome can lead full, independent lives, attending mainstream schools, gaining employment and participating fully in society. To achieve that and to improve life outcomes for people with Down syndrome, we need more than just general disability support: we need Down syndrome-specific strategies.

This is where the long-overdue guidance will play its part. The guidance will determine the success of the Act and be a practical road map that provides clarity on how the principles of the Act should be implemented. Without it, the Act will just remain words on the page. The preparation and implementation of the guidance, however, has faced challenges. We know that there have been significant delays in updating the guidance. More importantly, there are concerns that the current draft of the guidance does not reflect the original intent of the Act and lacks the Down syndrome-specific focus in line with the Government’s statutory duty.

I thank the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock), for writing to me yesterday to assure me that he has listened to those concerns, and that he is engaging with stakeholders and working with all relevant Departments to produce a second draft of the guidance, with a view to putting it out for consultation by the summer. My ask of the Minister is to ensure that the second draft of the guidance reflects the feedback raised by the National Down Syndrome Policy Group, the Down’s Syndrome Association and others. I am sure he will agree that we need guidance that is robust, inclusive, and reflective of the needs of the community it is intended to support.

Importantly, an accountability mechanism must be included to ensure that individuals and organisations responsible for the implementation are held to their obligations. Additional direction and training should be considered for external bodies to help them to understand fully their roles in effectively implementing the guidance in the first place. I hope the Minister will give due consideration to these points as the second draft is prepared.

The Down Syndrome Act and its guidance offer an incredible opportunity to improve outcomes for people with Down syndrome, but we must ensure that the guidance reflects the specific needs of the community it aims to serve. To ensure that that is the case, I hope the Minister will agree, on behalf of the Minister for Care, to meet with representatives of the APPG on Down syndrome and the National Down Syndrome Policy Group to discuss and address our key concerns. By working together, we can create a future where people with Down syndrome are not only included, but truly empowered to reach their full potential.

18:08

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship for the second time today, Mr Turner. I wish you well in this new role, and I hope we will have many engagements in this Chamber. I thank the right hon. Member for Beverley and Holderness (Graham Stuart) for raising this issue and introducing the debate. He has taken the mantle on well and I congratulate him. In the short time I have, I will give three inspirational examples of those with Down’s syndrome from Northern Ireland. I know the parents of one of them personally.

First, many people will have seen James Martin from Belfast; the Minister, who always has a close eye on what is happening in Northern Ireland, will know him. Last year at the Academy Awards he was an inspiration to so many, showing that the opportunities are limitless for that young man. There is a place in our society for so many different skills and abilities. I am truly thankful for those who are at pains to portray acceptance in the mainstream. James did us all proud at the Oscars, and set the scene for more to be done.

Secondly, young Kate Grant was Northern Ireland’s first Down’s syndrome model to walk at London fashion week. What an inspiration that young lady was. Our society has made limits, but they are being changed, which can only be a good thing. In setting the scene, the right hon. Member for Beverley and Holderness talked about how we must change the limits and ensure that young people have opportunities.

Thirdly, my parliamentary aide volunteers in a local Campaigners clan in Newtownards. In her clan is a young boy called Harry; he and his younger sister are integral members of the group. Harry played the role of a wise man in the nativity play this Christmas, delivering his iconic line, “Look at the star!”, with great confidence and gusto. He attends a special school but is well integrated in this wee group, and the inspirational aspect is that he is not treated as different by the children around him. They just see him as Harry; they attach no Down’s syndrome label to him, but accept him as he is.

I love to see and hear those stories of integration and I think the right hon. Gentleman hopes to see that sort of integration across society. We all know the days of stigmatising Down’s syndrome children are well in the past, and rightly so. Now is the time to step up and help these children and adults to find their place in our society. I believe that that is happening more, and that is very positive.

I have one concern, which is that children with Down’s syndrome can be aborted up to birth in Northern Ireland, under the horrific imposed abortion regime. It is an absolute stain on this House that it made the decision to impose that regime in Northern Ireland. I cannot highlight the wonderful steps forward that society is taking without begging once again that allowing abortion until birth simply because a child has Down’s syndrome is removed from our legislation. We voted against that measure at the time, but this House passed it for Northern Ireland.

I will never forget the words of young Heidi Crowther, who has Down’s syndrome, urging people not to allow abortion until birth, saying:

“My life has as much value as anybody else’s.”

That is so true, and the worth of people like her to communities around the world is beginning to be understood. We must encourage and support children and adults—and parents, too. I look to the Minister, as I always do, to ensure that families have access to help and support throughout this United Kingdom of Great Britain and Northern Ireland, which is only made richer and stronger by our differences.

18:12

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to see you in the chair, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this debate. The Down Syndrome Act is simple, but brilliant—but it is powerless without the guidance to accompany it. That is why this debate is timely.

I also call it timely because the elements of the Act determine the very structure that can support a child through to adulthood, from birth through to work. The Act depends on three main pillars, the first of which is healthcare. At this time, we are putting in place a 10-year NHS plan, putting together the NHS of the future, and looking at how we can keep ourselves well; we are putting in early intervention measures and ensuring that we have the workforce needed in the future. If this guidance is to have effect, we need the workforce and the structures to support individuals and their families. Now is the time to look at that and to put in the additional screening and support that a person with Down syndrome needs to optimise their health and keep well throughout their life.

The second pillar is that we are having a massive review of the education system at the moment. We are looking at curriculum change, recognising that the broadening of the curriculum will be much more inclusive. As we review SEND and the whole education system, it is timely to bring in this guidance. It cannot just be guidance around Down syndrome looking in; it must be looking out at other Departments. Again, the time is now. Look at the data: the figure of 80% of children with Down syndrome attending primary school drops to between 25% and 37% in secondary school. That deficit in itself indicates that we need significant change in our education system. We need a schools system that is nurturing, therapeutic and integrated, so that no child feels on the outside of the education they are rightly entitled to.

The third pillar is the place of work. We need to ensure that there are more opportunities for people with Down syndrome to engage in the labour market. Just yesterday, the Government published their plan “Pathways to Work”, which I see as a plan in two halves. The first half will enable more people to access the labour market, to follow the career of their dreams, and to have their skills and talents recognised. We need to ensure that everybody with Down syndrome has that opportunity where it can be afforded—if not in a formal workplace, by volunteering in the community or being able to have the most life-enhancing opportunities available to them. When I talk about the second half of the plan, I have deep concern for people with Down syndrome, looking at the proposed thresholds for personal independence payment in which people will have to score at least four points to meet the threshold to access vital funding to keep them independent —the key word in personal independence payments. We need to ensure that we feed into that debate.

When we get this right, it will be for the benefit of the whole of society. In York, I think of those people who work in West Offices, where the café is run by United Response and provides real work opportunities, and of the Once Seen theatre company, where I see such talent on display. We must get this guidance—

[Karl Turner (in the Chair)]

Order. I call Bobby Dean.

18:16

[Bobby Dean (Carshalton and Wallington) (LD)]

It is a pleasure to serve under your chairmanship, Mr Turner. I thank the right hon. Member for Beverley and Holderness (Graham Stuart) for securing the debate today and for articulating the key points of the Act so well. I cannot move on without also thanking the hon. Member for Thurrock (Jen Craft) for her inspiring contribution. She really did her community proud today.

This issue came to my attention because I have a constituent called Lucienne who sits on the National Down Syndrome Policy Group and runs a local group called Get On Downs. I was at its annual celebration this morning—we had tea and cake, we threw balls around a ball pit, and I wore funky socks as demanded by the event—unfortunately, you cannot see them, Mr Turner, but I am still wearing them. I got to meet Noah, Lily, Stephen and Charlotte, all people living with Down syndrome and thriving in that loving space. I asked Charlotte what she would like me to say to the Minister, and she said she would like me to tell the Minister that she is fantastic—so I have done that.

I also spoke to parents there, who told me about the relief of having that space, including for themselves, so they could talk to other parents and share experiences. They also had some serious points to make about the Act, which they were all aware of. A common theme was the education system and that the specific needs of Down syndrome children are not being met, even though the smallest of adaptations and interventions can make such a massive difference. Schools are not aware of that and we need to get the guidance sorted for them.

I also heard a story about someone moving on to post-16 education and the demands on them to take maths and English to a particular level, when what they actually need is the vocational skills. They want to become an animal carer and wish they could just have access to a vocational course without the hard maths and English requirements. I also heard about the need for more support to stay in work. Charlotte did Christmas cover in retail, but companies were not looking to keep her on.

There were warm words for Lucienne—or Lu, as she is known—and she was described as a “life saver” for setting up that local group. She has also set up an amazing initiative with the local hospital trust. The healthcare information provided at birth can be daunting, warning about some of the things that parents of children with Down syndrome will have to face. Lu wanted to flip that on its head and provide care packages to new parents of children with Down syndrome that congratulated them and talked about all the joys ahead of them. I want to recognise that brilliant initiative.

It is fitting to give the last word to Lu, and these are the questions that she wants to ask the Minister. What is happening with the guidance, and why the delay? Will the Minister agree to meet the National Down Syndrome Policy Group? Can the Minister reassure us that the draft guidance will be Down syndrome-specific? Lu wanted to labour the point about the specific learning profile that requires specific interventions. She asks, “What is the point in a Down Syndrome Act if it is not specific to people with Down syndrome?”

18:19

[Jess Brown-Fuller (Chichester) (LD)]

It is a pleasure to serve under your chairmanship, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this important and timely debate ahead of World Down Syndrome Day this Friday.

What a pleasure it was to take the opportunity before the debate, as we were slightly delayed, to chat to marvellous Millie, who is an incredible advocate for those who have been touched by Down syndrome.

In my constituency of Chichester we are fortunate to have an incredible charity, the Chichester and Arun Down Syndrome Support Group, which works tirelessly to fill the gaps left by failings in public service provision. Ahead of this debate, the charity highlighted to me many of the challenges that people with Down syndrome face, particularly in accessing the support they need throughout their education. One of its core initiatives as a charity is the bespoke schools outreach programme, which ensures that children with Down syndrome receive the tailored education they require. They require additional support throughout their education, yet many families struggle to obtain EHCPs from local authorities.

In West Sussex, the picture is stark: only 3.6% of EHCPs were issued within the statutory timeframe of 20 weeks in 2023, and the situation has not got much better. Those delays force children with Down syndrome to remain in unsuitable educational environments where their needs are not met, which hinders their opportunities. Most importantly, when an EHCP is issued, we need the accountability to see that that EHCP is delivered.

The charity also highlighted to me the cliff edge of support that people living with Down syndrome face at the age of 18, when they are no longer in an education provision. I was pleased to visit Together Our Community at its exciting new venue in Chichester, which is due to open next month. That will provide a space for TOC members and a public-facing café where adults with additional needs between the ages of 18 and 35 will have the chance to learn and develop essential skills. For people with Down syndrome, charitable organisations such as those provide vital support and services and give these incredible people the opportunity to thrive, not just survive.

The Down Syndrome Act recognised the needs of those living with Down syndrome and rightly acknowledged that public services must take those needs into account across health, social care, education and other local authority provisions. However, the Act must be properly resourced. The NHS website lists a range of specialists that a person with Down syndrome may need to see, including speech and language therapists, physiotherapists, opticians and occupational therapists. Yet local organisations consistently report a lack of those essential services, which undermines the opportunities for people with Down syndrome to live comfortably or independently. Three years on from Royal Assent, the Act is not supporting those who it was designed to support.

The Liberal Democrats have long called for all individuals with long-term conditions or disabilities to have access to a named doctor, which would shift care from the corridors of hospitals to local communities. That is especially crucial for people with Down syndrome, who not only have learning disabilities but are at a significantly higher risk of conditions such as dementia, seizures and leukaemia, as the hon. Member for Thurrock (Jen Craft) mentioned.

The impact of social care on people with Down syndrome cannot be overstated, which is why the Liberal Democrats are calling for a comprehensive overhaul of social care policy. While we welcome the cross-party commission to establish a long-term agreement on social care, we strongly believe that it can be concluded within one year, not three.

While the Down Syndrome Act was a step in the right direction, real change requires more than warm words; it demands proper funding and meaningful action. From healthcare and social care to employment and independent living, people with Down syndrome deserve better. As the right hon. Member for Beverley and Holderness stated, the guidance is where we are severely lacking at this moment in time. The Government must prioritise this issue, and we will continue to push for the improvements necessary to enhance quality of life for all.

18:23

[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.

18:28

[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.

[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.

18:37

[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.

18:37

Sitting adjourned.