Down’s Syndrome

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Various versions of draft guidance have been produced, but none of them even completely covered what was required, let alone adequately.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

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?

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.

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.

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.

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.

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.

Order. I call Bobby Dean.

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.

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.