PARLIAMENTARY DEBATE
World Down Syndrome Day - 23 March 2023 (Commons/Commons Chamber)

I beg to move,

That this House has considered World Down Syndrome Day.

I am grateful to have secured this debate, and I thank colleagues from all parties for their support in being able to do so. Two days ago I was honoured and privileged to be able to speak on behalf of the United Kingdom at the United Nations in New York on the 12th World Down Syndrome Day. It was an acknowledgement of the United Kingdom’s role as the country that has been the first to legislate in this area, of which we should be extremely proud. It was important that we took that opportunity to make the case.

When we passed the Down Syndrome Act 2022, it was a recognition of the strength of our electoral system. With the first-past-the-post system, whatever its handicaps, we are real constituency MPs with real constituents, and the fact that we are exposed to the complex problems they have enables us to be responsive to their needs and them to know who to go to when they need help with the problems they face. I also think that passing this legislation was a recognition of something we do not always do as politicians. One of the intrinsic problems in a democratic system is that we tend to get more credit for dealing with a crisis than preventing one. One of the key elements of this legislation is that it shows that Parliament can anticipate problems before they become a serious crisis-ridden issue. I will come back to that, if I may.

I thank all the charities associated with Down syndrome for the work they have done since the passage of the legislation, and I thank all those voluntary groups who helped with the consultation. I particularly thank the National Down Syndrome Policy Group, not least for its support for our function in Parliament, which I was unable to attend due to being in New York. I thank my hon. Friend the Member for Meon Valley (Mrs Drummond) who stood in so expertly to chair such a successful event.

The theme for World Down Syndrome Day this year was “With Us Not For Us”, and thinking about legal capacity and supported decision making is incredibly important.

We all expect and take for granted that we can make decisions about our lives—from where we live and whom we live with to what we study and where we work—and because we take these choices for granted, we must not forget that other people do not necessarily have the ability to do so. It is therefore absolutely right that people with Down syndrome are involved in all the decisions that affect their lives.

As I said when I was in New York, when a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population and so, inevitably, do their families, who will face different challenges. Those challenges come, as we all know, in the form of medical problems, educational needs and long-term care challenges. The consequential change in life expectancy was one of the main reasons that we passed the legislation in the first place. I believe that every individual with Down syndrome has the same right to life, quality of life, dignity and independence that the rest of the population take for granted.

I congratulate the right hon. Member on today’s Backbench Business debate and the Act that he got through Parliament. Whether a child attends a special educational needs and disabilities-specific school or a mainstream school with SEND support is not dependent on any particular condition or diagnosis, but dependent on where the child’s needs can be best met. Children with Down syndrome can thrive in mainstream education, so does the right hon. Member agree that increasing awareness of the condition among education professionals, parents and all children is important in ensuring that children with Down syndrome have access to the right learning environment for them?

I am grateful to the hon. Lady for making that point, because we can pass as much legislation as we like, but if the professionals at the sharp end, who are required to implement any changes or guidance, do not have sufficient understanding of the problem they are facing, we are all at a deficit in our response. I think the issue of professional education is so important not just for teachers, for whom it obviously is important, but for the medical profession, the social work profession and those involved in local government, who will deal with some of those issues relating to care, particularly long-term care. I think it is an extremely important issue.

I was able in the UN debate to show how the United Kingdom has a very proud record in legislation in this general area. The UK has a long-standing tradition of ensuring that the rights and liberties of disabled people are protected. We ratified the UN convention on the rights of persons with disabilities in 2019. Internationally, our disability inclusion and rights strategy sets out the ambition to embed disability inclusion across all our diplomacy, policy and programmes. The Equality Act 2010 legally protects people in England, Wales and Scotland from discrimination in the workplace and in wider society. We also have the Mental Capacity Act 2005, covering England and Wales, to ensure that every attempt is made to support someone to make decisions about their own lives, and that of course includes people with Down syndrome.

I would like, if I may, to say a word about the Down Syndrome Act and remind us why we passed this legislation. Primarily, it was about empowerment. The Act legislates not for Down syndrome, but for people with Down syndrome. It requires the Government in England to produce Down syndrome-specific guidance relating to health, social care, education and housing services. I hope that Members from Scottish and Welsh constituencies may be able to update the House on how this legislation is being adapted and implemented there. I will come back, if I may, to the point about its being Down syndrome- specific, because I have some concerns that that may be being lost in some parts of the consultation process.

It is important to remind ourselves about the legislation. Under the Act, public authorities such as hospitals, schools or social care providers cannot ignore the guidance when commissioning and delivering services. The guidance must set out what the unique needs of people with Down syndrome are, and what public authorities should be doing to ensure that the support needs of people with Down syndrome are met to enable them to live fulfilling lives. I will come back to this element of the guidance, because one of the issues we discussed in Committee—this has been a controversial issue in this House in relation to other legislation—is when does the guidance become instruction. If Ministers are issuing guidance that is in effect instruction, surely that should be laid before the House of Commons so that we can recognise the importance of that and scrutinise how ministerial authority is being used.

I think that for too long there have been too few levers available for individuals, families and their advocates, including us as Members of Parliament when it comes to getting fair treatment for our constituents with Down syndrome. After all, what is the point of rights in legislation if we cannot enforce them and if there is no mechanism to do so? That was one of the key elements we discussed during the passage of the legislation, and it led to two very important and, I think, innovative changes: the first is on parliamentary scrutiny, and the second is on individual empowerment.

One of the problems we have faced before is that, when Ministers issue guidance, there is very little ability for parliamentary Select Committees to take direct oversight of it. One of the principles we established—and I am very grateful to my right hon. Friend the Member for Chichester (Gillian Keegan), who is now the Secretary of State for Education, for her support in establishing this principle—is that if the guidance is in fact instruction, the guidance would be laid before Parliament, which of course means that the Education Committee, the Health and Social Care Committee and local government can all look at it in real time.

One of the things we considered was whether we would have to put a sunset clause on this legislation to enable Parliament to look at it again. The mechanism that we decided on—I think rightly—in this House and in the other place was that, in publishing the guidance, we would have real-time oversight, because when our constituents bring problems to us, we are all able to write to the Chair of whatever Committee it is and ask them to look into that particular aspect of how the Down Syndrome Act is functioning. That gives us, as Members of Parliament, a lever that we did not have before when we simply wrote a letter to a Minister and hoped for the best, which is not sufficient to implement the rights of our constituents in the way that I think we envisaged during the passage of the Act.

This will be very important for people in the Down syndrome community who believe they are being diagnostically overshadowed and that things are being missed. Does the right hon. Gentleman agree with me that that is particularly important when enforcing someone’s rights in relation to healthcare?

It is. Diagnostic overshadowing is very important, in that we should not miss things in people with Down syndrome because we are looking the other way, or we are distracted by the diagnosis and not looking sufficiently at the person. Greater professional education—and this goes back to the point made by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier)—is a key part of the empowerment of the individuals for whom this legislation was produced. I know from my own medical education that there was not a great deal of it that involved us learning about specific needs. For the medical profession, the sort of overlooking that the hon. Gentleman describes is a real risk if the thought is not there that someone may see a different position from the one they should because of the very overshadowing that he describes. I imagine he may enlighten us further on that particular issue, and I hope he will because it is a real issue that needs to be examined fully.

The second important change in our legislation was that we included in it the need for a named individual on the new integrated care boards to be responsible for the implementation of the Down Syndrome Act. A very senior Member of this House said to me during the passage of the Bill in Committee, “Do the Government realise the floodgates that they may be opening in agreeing to this?” I said that I was not sure, but that it really was not my problem. I think this is a tremendous innovation, because all too often we have an anonymised bureaucracy when it comes to the delivery of the things that Parliament intends. We can vote for things in this House and, with taxpayers’ money, we can fund them, but if we do not know who is responsible for the delivery in our own locality, it becomes difficult for us as Members of Parliament to know who to get in touch with.

The de-anonymisation of the civil service, which is something I have long and profoundly believed in doing, received its first outing in that Act. It may be a by-product —in my mind it was not that; it was an essential principle —but none the less it is extremely important. With this new system, for the first time, individuals, families and advocates for people with Down syndrome will know who is responsible. For once, there will be a named person in our system who people can turn to for either assistance or redress, depending on the nature of the problem. I hope we will extend that principle further in the provision of public services. For too long in this country, taxpayers have provided the funding, but they do not have accountability in the delivery mechanisms of those public services. It is, in many ways, a quiet revolution that I hope this Act will usher in. It is a principle and a precedent that has been much understated in the interpretation of what Parliament has done.

The guidance itself has been subject to long and detailed consultation, and I look forward to the draft publication in the summer. The Government face a number of challenges with this, which are worthy of debate. One question that was frequently raised in both Committee and the House was, “What about those with problems similar to those with Down syndrome; are we effectively creating a ladder of preferment in the provisions of public services?” Quite wisely, the Minister at the time said that it would be reasonable to consider those with overlapping problems at the same time as we were looking at the implementation of the Act. I say gently, however, that while that is absolutely right, we must also remember that the Act is specific to Down syndrome. When it comes to Down syndrome there is no doubt about the diagnosis, and unlike many other conditions where there are overlapping symptoms and signs to consider, there is no doubt about it. Down syndrome is not a subset of other conditions or of learning disabilities, although on a Venn diagram there will be a huge overlap; it is a specific condition and we must regard it as such.

I would like the Government to consider some specific areas, one of which relates to education rather than health. This is a formal request to Ministers to add Down syndrome as a separate category to the annual school census. Why? Because there is currently no Down syndrome-specific school data available, including numbers, location, or educational settings, because individuals with Down syndrome are included only in the general special educational needs and disability school numbers. If we are to have specific legislation, it makes sense to have specific data with which to interpret the success of its implementation. Children with Down syndrome in the education system will have specific speech and language issues, significant fine and gross motor delay, cognitive delay, hearing loss, visual issues—we detailed that on Second Reading—social and emotional needs, and specific and unique learning profiles associated with Down syndrome. Some of those conditions will be shared with other syndromes and medical conditions, but many will be specific to Down syndrome. If we are not to get the overshadowing problem, we must be clear about what we need to know about this.

In New York I was able to set out the sort of cases and advances that we have made in this country by being able to utilise a range of tools that enable people with Down syndrome to make more decisions for themselves. As we have a better understanding, for example among social workers and community medical staff, we are increasingly able to deploy those tools to ensure that those who have a voice—a voice that would not necessarily traditionally be recognised in our system—are able to make more decisions for themselves. That was at the heart of what the UN 12th World Down Syndrome Day meant.

I do not wish to speak any longer than necessary and take up colleagues’ valuable time, so I will end with this quote from Heidi Carter, who I have come to know increasingly well. She is a valiant campaigner for Down syndrome rights, and she states:

“I have shown everyone that Down syndrome is not something to be scared of and that people with Down syndrome live happy, amazing, fulfilled and independent lives!”

Congratulations to her and her husband on their marriage. I wish them well. She said:

“We are not going to give up. I think that all human life is valuable and should be treated with respect however many chromosomes we have!”

I do not believe there is a single one of us in this House who would not agree with that sentiment.

I congratulate the right hon. Member for North Somerset (Dr Fox) on securing this debate, and on the passage of his Act. I enjoyed his contribution this afternoon, advocating for individuals in the Down syndrome community. I assure him that I was at the parliamentary event on Wednesday, and there were people from Scotland down in the Lobby discussing some of those issues. It was a privilege to be there. It is also a privilege to be an elected representative, and one of the privileges that come with that is that we meet those we represent who speak truth to power. On Saturday, my constituent, Danielle Urie, came to see me at my Ibrox surgery. She asked me to participate in this debate, which is why I am here this afternoon. I asked Danielle to write to me about some of the things she wanted to say, and after the exchange I had with the right hon. Gentleman about diagnostic overshadowing, I am afraid that, sadly, there is an example of that coming up.

Danielle is currently going through the complaints procedure with the health service in Scotland to discuss some of this. I asked her, and her son Steven, to go through their experiences, and I will read what Danielle sent to me last night:

“My name is Danielle Urie. If my son Steven could speak, I’m sure this is what he would say. ‘My name is Steven I am 11 years old. From 2019 to 2021 I was diagnostically overshadowed by doctors which resulted to damage in my body that can never be reversed, while sitting in chronic pain and bleeding for two years. I am now left with a permanent stoma and my large bowel being completely removed. During this time I had been treated with no respect, and left with no dignity.’ If Steven was a typical child who could voice for himself I don’t think any of this would have happened. I want you to all know the catastrophic consequences that can happen with diagnostic overshadowing, because it’s real and it happens more than you all think. To have no control on what happens with your child’s healthcare is terrifying . I don’t want my child or any child in fact to be added to the statistics of people with Down’s syndrome dying as a result of being diagnostically overshadowed.”

I want to thank Danielle for having the bravery to write to a Member of Parliament to share that particular experience.

The right hon. Gentleman invited us to talk about what is happening in other devolved nations, and I have some constructive criticisms about what is happening in Scotland. I do not think that everything is wrong with what the Scottish Government are doing, but I have some comments to make. The Scottish Government’s position is that they take a wider view and are committed to introducing the learning disability, autism and neurodiversity Bill as part of their programme for government. There are opportunities there. In delivering the Bill, the Scottish Government want to improve opportunities, outcomes and support for people with Down’s syndrome.

There will be a consultation on the Bill later this year. I will certainly be assisting Danielle, and any others, as a part of that. It will provide an opportunity for people to view the policy options that could be included in the draft Bill, including whether it should establish a commissioner. As part of their scoping work, the Scottish Government ran events with a wide range of Scotland’s disabled people-led organisations and national charities. The Scottish Government are working towards a human rights-based approach to ensure the Bill is fully co-designed with people who have lived experiences. It is very important, when shaping legislation, that people with those lived experiences are involved from the outset.

I would like to see the words “Down’s syndrome” included in the title of the Bill. I think that would be welcomed by those who came down from Scotland to the event in Parliament on Tuesday. Why do I think that is important? People with Down’s syndrome are more likely to be born with a heart condition and more likely to get leukaemia. People in the Down’s syndrome community are more prone to infections and thyroid problems, and more susceptible to eye and hearing problems. We want to ensure that those with Down’s syndrome get extra health checks, for example, and have access to speech therapy. It is very important that people with Down’s syndrome have those opportunities. Those are some of the reasons why I want the Down’s syndrome community in Scotland have the words “Down’s syndrome” in the title of the Bill. I will be working with Danielle and others to ensure that that is the case.

First, I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all the work he did to ensure the Down Syndrome Act 2022 became law.

During our lifetime, there has been a significant change in attitude towards Down syndrome. Undoubtedly, there is still more that can be done to improve the quality of life and opportunities of people with Down syndrome, but as we mark the 18th anniversary of the first World Down Syndrome Day, we should not forget the progress that has been made in understanding the condition and supporting those with Down syndrome to be treated fairly so they are able to live full and productive lives.

I speak with personal experience. My father had an elder brother, Donald, who had Down syndrome. I was only told of his existence when I was 27 years old and pregnant with my second child. Donald died in 1946, aged about 25. He spent all his life in an institution, which was standard practice at the time. My father did not talk about his brother. He found it too painful. My mother explained to me that when my father was a small child, my grandmother had taken him with her every month to visit his brother in the institution and the experience had traumatised him.

When I spoke during the Down Syndrome Bill debate last year, I referenced the BBC series “Call the Midwife”, which documented attitudes towards Down syndrome and how they started changing in the 1950s and 1960s as people with Down syndrome were able to take an active part in their communities. Not only have attitudes changed, but life expectancy has increased dramatically in recent decades from 25 years in the 1900s to 60 years today. Medical science has advanced and people can live extremely healthy and long lives, and make a great contribution to our society.

I am incredibly grateful for this opportunity to celebrate the achievements and contributions of people with Down syndrome to their local communities and to our society as a whole.

I congratulate the right hon. Member for North Somerset (Dr Fox) on securing the debate. We are all encouraged by the situation. What comes to my mind is a young gentleman called James Martin, the 31-year-old who starred in the roaring success, “An Irish Goodbye”. He has gone from working in Starbucks to living his dream by winning a globally recognised award. Most importantly, he has never let his disability get in the way of goals and achievement. Does the hon. Lady agree that James is a true role model to all individuals out there who feel that society restrains them due to their disability, and reminds them that the world is their oyster—or in this case, their Oscar?

I thank the hon. Gentleman for his intervention. He is absolutely correct.

In Stoke, the Stoke and Staffordshire Downs Syndrome Social Group was set up in 2016 by a family in my constituency after their son was born with Down syndrome and the couple walked away from hospital with just a factsheet about the disorder. Today, the group meets regularly in Birches Head and is making a difference to the lives of more than 50 families by organising regular trips and activities, as well as supporting families emotionally and connecting them with wider support groups.

I would also like to highlight the great WorkFit programme for its role in making workplaces more inclusive. WorkFit is an employment programme that matches places and supports individuals with Down syndrome into work, with more than 1,000 individuals successfully accessing the service to date. In my constituency of Stoke-on-Trent Central, I was delighted to hear that the programme supported Grace into her role at Dunelm distribution centre, where she works dealing with returns from customers. She works two days a week and really enjoys being part of a great team who are very supportive. She uses her computer skills to process returns from customers and is very proud of her job.

Last week’s Budget outlined ways in which we would like to see a greater proportion of working-age people in employment, with a specific emphasis on supporting disabled people into work. One thing I would like to see is an improvement in ensuring that public transport services are available for travelling to and from work, so that a lack of access is not a barrier to that aim. Indeed, while it is wonderful to hear stories like Grace’s, according to the Down’s Syndrome Association, people with Down syndrome often face barriers and prejudice, lack of opportunities, low expectations, stereotyping and other negative attitudes. A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, but only 6% have a paid job.

Everyone should have the right to work. People who have Down syndrome want to work for the same reasons as everyone else: to earn their own money, learn new skills, meet new people, feel valued, contribute to society, and have the chance to be more independent. Work is important for so many reasons and is a key part of our personal ambitions. For employers and their workforce, being equipped with the knowledge and understanding of how to better support a colleague with the condition is at the heart of the matter. In fact, it is key to achieving an inclusive work environment.

The same goes for education. The majority of children with disabilities in developing countries are currently out of school, while many of those enrolled are not in learning. To ensure that all children have access to quality education, education policies and practices must be inclusive of all learners, encourage the full participation of all, and promote diversity as a resource rather than as an obstacle. I was listening to an interview with a teacher recently, who said that she had seen such a difference in her class after moving from retrospectively altering her lesson plans for children in the class with Down syndrome, to thinking about how she can make a plan that includes the needs of all her pupils from the beginning. When we think about successful inclusion, it is about how are we supporting teachers to include and value everyone from the start, as opposed to adapting and modifying in retrospect.

The theme of this year’s World Down Syndrome Day is “With Us Not For Us”. I think that reflects my point well: a move from the outdated charity model of disability to working with others to treat them fairly so that they have the same opportunities as everyone else.

Mr Deputy Speaker, I hope you will forgive me, but my constituent Ed Daly is in the Public Gallery with his mum, Jane. They spoke at the event on Tuesday in Parliament and they are fantastic advocates for this cause. Everything my hon. Friend says absolutely sums up what they have been saying to me. Will she, as I do, pay tribute to them?

I absolutely do pay tribute to them. I cannot see them in the Public Gallery, but it is wonderful that they are here to listen to the debate and to hear all the support there is for them in the House.

Support in decision making is really good. We all need help from people who know us and want the best for us. But people should have the right to make the final decision, the right to dignity and individuality, and the right to be in control of their lives.

It is a huge pleasure to speak in this afternoon’s debate. I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing it, for his groundbreaking work in this area and for his Bill, which was passed into law last year.

As we have heard, the theme of this year’s World Down Syndrome Day is “With Us Not For Us”—apt recognition of the fact that people with disabilities have the right to be treated fairly and to have the same opportunities as everybody else, working with others to improve their lives. Nowhere is that exemplified more brilliantly than through the work of the world-famous, world record breaking Music Man project—a Southend-based education and performance service for people with physical and cognitive learning difficulties such as Down syndrome.

The Music Man project reverses perceptions around disability, including Down syndrome, on a scale rarely seen before. The project has been so successful that there are now regional centres across the United Kingdom and even around the world. None of that would have been possible without the incredible leadership and drive of the Government’s disability and access ambassador for arts and culture, Southend’s very own hero David Stanley BEM. He really does deserve a knighthood. David’s mission in life has been to support people with learning difficulties to achieve what would once have been unthinkable. He is the living embodiment of, “With Us Not For Us”.

David Stanley’s students recently performed alongside the Massed Bands of His Majesty’s Royal Marines in the Mountbatten festival of music at the Royal Albert Hall. A total of 15,000 people gave them a standing ovation over three performances. One such supporter was none other than His Majesty the King, who rose to his feet to applaud these incredible musicians. It was a remarkable moment and testament to the power of music to shine a light on a once forgotten society.

Quite rightly, in February this year, David Stanley received a special recognition award from the National Lottery for his work with the Music Man project. Everyone in Southend is incredibly proud of his work and that of these incredible musicians with Down syndrome who are achieving so much. Some will know that one of their astonishing achievements was to come out with a Christmas single, “Music is Magic”, which made the top 10—it may have been at No. 10, but never mind. It was an amazing record, featured on BBC1’s “Breakfast”, Sky News, ITV’s “Good Morning Britain” and across national radio and press. It was officially launched with a performance at the Painted Hall in Greenwich, and the Prime Minister was presented with his own copy by the Leader of the House. I took my team to Waterloo station where the musicians were performing. It was an incredible and joyous occasion to help them and to sing with them there.

Not content with just storming the charts here in the UK, the Music Man ambassadors—bandassadors—also stormed America on their recent concert tour to San Diego, where they performed onboard the iconic aircraft carrier the USS Midway. Their groundbreaking collaboration with the Royal Marines connects elite military musicians with people with learning disabilities, through the universal language of music. Last year, they also received four “yes” votes from the celebrity judges of “Britain’s Got Talent”. Simon Cowell described them as

“like drinking a glass of happiness”.

Watch this space.

I could go on about the project’s incredible musical success. As I have said, it is the perfect example of “With Us Not For Us”. The students are treated as fellow musicians and enjoy the same incredible opportunities to express themselves and share their talents. As a result, musicians with Down syndrome are now role models for their community and global ambassadors for the UK’s accessible arts and culture. David Stanley himself says,

“Sometimes it feels as if I’m clinging on for the ride while they go on and make history.”

In preparing for this debate, I contacted the ex- headmistress of one of our special schools in Southend, who is now the CEO of the SEN Trust. There is more we can do to support people living with Down syndrome. Jackie Mullan, a brilliant champion of education for people with disabilities, has shared with me her concerns about the lack of post-19 college options for people with Down syndrome in Southend. There should be more options for people leaving college, whether that be entering the world of employment or enjoying better daycare opportunities. Sadly, at the moment, those are few and far between in Southend and are difficult to access due to the pressures on social worker workloads. She has even heard reports of families who have waited over six weeks just for a phone call to be returned about the options available. There should be a review of the guidance issued, looking at what is and is not available. That must be improved. I would be grateful if the Minister could confirm that the Government are looking into that.

There is so much to celebrate about the Down syndrome community and the champions we have in Southend, including Jackie Mullan and David Stanley. They are heroes, but only because of the incredible passion, energy, excitement and enthusiasm of the students they look after.

It is a pleasure to speak in this debate and I am pleased to see colleagues here who have come with their own experiences. I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on securing the debate and I thank him for his work with his Bill.

We discuss lots of issues in this Chamber, often prompted, lobbied for or orchestrated by individuals who have the loudest voices, including those who organise the petitions we debate in Westminster Hall, which have to have 100,000 signatures. Those people know how to work the system, so this afternoon it is good to take part in a debate prompted by those whose voices have been heard less frequently over the years. Those voices sometimes belong to less able-bodied people or, as in this case, those who have Down syndrome.

My hon. Friend the Member for Stoke-on-Trent Central (Jo Gideon) spoke movingly about her own experiences; it was emotional for her to relate those experiences to us. She spoke about her father and his experience of having a brother who was left in care. There was a time when people with Down syndrome or other disabilities were always put into care. That was a terrible time and I am very pleased that we have now moved beyond that.

My hon. Friend the Member for Ashfield (Lee Anderson) mentioned the caring role of parents who are able—or in some cases not able—to look after people who are suffering from these terrible conditions. We should pay tribute to them, especially those in the Public Gallery today. I have to admit that I could not undertake that role. I do not, unfortunately, have children, but I would find it very difficult to look after the day-to-day needs of anyone with any kind of disability. I will be honest and say that I could not do that. I pay tribute to my sister, who is undertaking a caring role at the minute. As I have explained to her, that is not something that I could do. Some people, like me, simply cannot do that.

Several years ago, I went to visit Saira and Anthony Hettiarachchi, who run the Dillon care home in West Hendon. Both Saira and Anthony are friends of mine. Saira was a Conservative councillor and worked in the sector for many years, meaning she was able to take some of those skills to her work at the council, including in children’s services. During my visit, she introduced me to many of the people she looked after, perhaps because their parents were unable to do so or because Saira’s care home was able to provide better care for them. She introduced me to a boy with Down syndrome called Michael, who did not have great verbal or other communication skills but could dance; actually, he danced rather well. He was a bit more like a cat than I am. He could dance and he was able to express himself. I was quite amazed at the time that someone who I thought would not be able to undertake that physical exertion was able to do that.

Later on, I saw Michael again, when I was at the St Joseph’s Pastoral Centre in Hendon. I saw not only Michael but other children with Down syndrome. They all seemed to communicate with each other, as they were winning awards, in their own special way. It was interesting to see because they were a group within the group and they were acting just like other children. There was no difference between them. It struck me that they were like anyone else, and had the same hopes and aspirations.

I have visited the Larches community trust in Edgware on several occasions, as I mentioned in my maiden speech, which was established by Linda Edwards. On one visit to the centre, I was asked, as many of us often are, to say a few words without any notice. I thought, “I’m going to take a risk, on this occasion. I’m going to say what I think.” I know the Whips complain that I often not only say what I think but vote the way I think is appropriate, but on that occasion I thought I would take the chance, and it was worth it.

I spoke about people with Down syndrome and I said how they were coming out of the darkness and into the mainstream. An example I raised was about a person called Liam Barstow, who many people will know better as Alex Warner, the character in the soap opera, “Coronation Street”. Liam was born with Down syndrome and was discovered by the producers of “Coronation Street” when they ran a workshop for actors with disabilities, called Breaking Through. They were so impressed with his abilities, they decided to create a role for him. One producer said, “It’s not some politically correct thing. We found there a really great actor with a wonderful sense of timing.”

I do not really watch soap operas, but on the occasions that I have seen “Coronation Street” I have been quite amused by some of lines that Liam has. We all know Roy Cropper is a character in “Coronation Street” who runs the local café. I would not call him a ladies man, but there was an occasion when he had two female acquaintances who were friends. Liam delivered a wonderful line, asking Roy if he was a “playa”, which was a hilarious moment.

There have been other examples of people with Down syndrome in popular culture. Other people have spoken about their experiences today, which is good, and this is a very serious issue, but we need to highlight other ways in which people with Down syndrome have made great contributions. I particularly like the film, “The Peanut Butter Falcon”. It is about a boy with Down syndrome who escapes from an assisted living facility and befriends a wayward fisherman on the run. The reason he escapes is that he wants to become a professional wrestler, which brings across to us that people with Down syndrome have hopes and aspirations, just like anyone else.

Like the hon. Member for Strangford (Jim Shannon), I have to raise the film “An Irish Goodbye”, which I have watched twice. For those who have not seen it, it is set in a working farm in rural Northern Ireland and follows the reunion of estranged brothers Turlough, played by Seamus O’Hara, and Lorcan, played by James Martin, after the untimely death of their mother, hence the title of the film. Lorcan wants to continue working the land he grew up with, but Turlough decides he should go and live with their aunt on the other side of Ireland. To prevent that, Lorcan says he has a bucket list his mother wanted to complete and will only leave the farm if he and Turlough have completed every single wish on their mother’s list—all 100 of them. I suggest people watch the film because it is a wonderful example of an individual who has broken free from stereotypes to become a commanding actor.

I highlight both productions because for many years people with disabilities, including those with Downs syndrome, have been written off and consigned to a lifetime on benefits. That is repugnant and I believe that both Liam and Jack have established themselves as actors.

As the hon. Member for Strangford said, Jack used to be a barista, which he claims he would be quite happy to go back to, but I hope he continues to act. He has recently been filmed playing a harmonica in a bar, which shows he has a range of talents and interests. Maybe there should be a genre of films with leading characters with Down syndrome, but before I am criticised for singling people out, I would say viewers who watch these productions will experience empathy with these characters, get used to seeing their point of view and come away with an acceptance that they face additional hardships, but still have the same hopes and desires as everyone else. People with Down syndrome are not the others in society that they once were.

I have often thought we could include more people in what we do in this place, and the debate today is a good example of that. We should ensure that people who suffer from Down syndrome are given the opportunities they deserve, and that they come into the mainstream and perform their best role in life.

May I congratulate the right hon. Member for North Somerset (Dr Fox)? Further into my speech I may disagree with him slightly—it will be a gentle disagreement—but I totally acknowledge his knowledge and his passion for people with Down’s syndrome. Unfortunately I was not able to make the reception on Wednesday, but I did manage to get my picture taken with the right hon. Member and tweet it out on World Down Syndrome Day; I think many of our constituents might have been quite surprised to see that.

It is always a pleasure to speak in these Thursday afternoon debates, because they are generally consensual and we really learn a lot. As the SNP spokesperson on disabilities I was not entirely sure whether I would be the right person to sum up in this debate, but I think I probably am, because of the passion that the people around me are exhibiting this afternoon. I will probably throw away my prepared speech now and just crib bits and pieces.

It is always a pleasure to follow Members such as my hon. Friend the Member for Glasgow South West (Chris Stephens). Everyone can be assured that he will assist his constituents to push the Scottish Government with their new Bill, because he is passionate about helping his constituents. The hon. Member for Stoke-on-Trent Central (Jo Gideon) spoke about her personal experience and about changing attitudes to Down’s syndrome and life expectancy. As one of the older people speaking today, I can vouch for that: when I was younger it was very difficult to see anyone with Down’s syndrome as we went about our daily living, but now things are very different right across the United Kingdom.

The hon. Member for Ashfield (Lee Anderson) spoke about real people; there cannot be many of us who have not met a real person with Down’s syndrome. The hon. Member for Southend West (Anna Firth) talked about the Music Man project and about the theme for this year’s Down Syndrome Day, “With Us Not For Us”—a motto and an expectation that we should all think about when we are dealing with people with disabilities. The hon. Member for Hendon (Dr Offord) paid tribute to those who care. I am pretty sure that he, too, cares about lots of things, but I understand his reluctance to put himself out there as a carer.

The right hon. Member for North Somerset wanted to know more about what is going on in other areas. Before I get on to that issue, I might just get over the point on which we might differ slightly. Like other Members, I get briefings from lots of organisations for many debates in this House. Genetic Alliance has written to me with its concerns about the guidance on the right hon. Member’s Act. It is worth just mentioning those concerns, which touch on the point that when Parliament passes a Bill there are often consequences that we do not see and a debate always opens up about what has not been included or what people think might have been included.

Given that people with Down’s syndrome form friendships with people with other genetic conditions and meet them regularly, as they are accessing similar services, Genetic Alliance has concerns that perhaps more thought should be given to guidance for those with other conditions. However, I absolutely take on board what the right hon. Member and my hon. Friend the Member for Glasgow South West have said.

I just want to clarify that the point of the Down Syndrome Act is not to exclude other conditions or other genetic conditions. It was specifically discussed on Second Reading and in Committee that where there is overlap, of course it makes sense to have common provision. However, Down syndrome is different: there is a bigger, defined population who have not just learning difficulty issues, but a whole range of very specific medical conditions that require specific remedies. As has regularly been pointed out, the life expectancy for someone with Down syndrome was 13 years when I was born, whereas it is now in the 60s. That is why it is important that we establish a beachhead for such conditions. Actually, I do not think we are in any disagreement whatever.

I am very relieved to hear that from the right hon. Gentleman, but I felt obliged to speak about the issue, because there are concerns. I would like the Minister to take on board those concerns from Genetic Alliance, because no one ever wants to pass a Bill that is seen as excluding or not actually helping other people—that is the main point of the briefing that I received today. As I say, I am very relieved not to be in dispute with the right hon. Member.

I want to talk a wee bit about the Scottish Government’s position. As my hon. Friend the Member for Glasgow South West said, they are taking a wider view of Down’s syndrome in the Bill that they want to bring forward. One of the main differences in how the Scottish Government propose legislation is the way they look at the issues and consult very widely—there are many groups that they regularly consult on disabilities. They always use lived experience, which I think is the most important thing for people to take forward.

The Scottish Government have also looked at a human rights-based approach. That ties in very well with this year’s World Down Syndrome Day theme, “With Us Not For Us”, because we need to look at human rights in their entirety, especially for people with Down’s syndrome and for people with conditions that are different but that have similar difficulties. That is why the Scottish Government have committed to incorporating in Scots law the UN convention on the rights of persons with disabilities—always within their legislative competence, hopefully. I think this Government should also think about including that in Bills. I think we are going to have difficulties with human rights discussions, shall I say, in this Parliament going forward; I hope we do not, but I think we all have to realise that everyone has human rights and they have to be adhered to. We should not, in any size, shape or form, be looking to remove any of them from any group of people at all.

As has been said today, it is really important to remove as many barriers as we can for everyone, and especially for those who have Down’s syndrome. It is really important that we look at what people can do, not at what they are not able to do—or not able to do yet. It is refreshing, and important, that people with Down’s syndrome are involved in mainstream education. When I was a further education lecturer, I was involved with a college with many courses for young people who had left full-time education to continue learning. On that subject, there is a wonderful café in my constituency called Windmills. The preparations for it were first made in 2006 at a local school, Firpark high school. It has done great work over the years, and continues to do great work, in training young people with learning disabilities, including Down’s syndrome, and teaching them how to gain qualifications so that they can work in other areas, but especially in the café.

Let me say in conclusion—because I am aware that I may be overrunning—that I find taking part in debates such as this interesting, educational and informative. I congratulate the right hon. Member for North Somerset on all that he does, and I am sure many people have benefited, and will benefit, from his Act.

I echo other Members in congratulating the right hon. Member for North Somerset (Dr Fox) on securing this important debate. We all know what a passionate and—most importantly—effective campaigner he has been in supporting people with Down syndrome and their families. His Down Syndrome Act, which Opposition Members were proud to support, represents an important opportunity for us to make progress on delivering the support that people with Down syndrome deserve, so that they can lead as full and equal a life as everyone else.

Let me say as an aside that I think what the right hon. Gentleman is trying to do has important implications for wider public sector reform. There are many issues and problems that people have talked about for years; the question is, how do we make change? The right hon. Gentleman’s mechanism in this instance is to use a specific Act providing for named individuals who are held accountable, and for guidance that actually secures change. However, there are other methods of securing changes in public services—for instance, through legal rights—and I am a strong champion of direct payments and personal budgets, which give people and their families the power to change those services. We need to focus on making a difference and putting the users of services and their families at the heart of the system, making them equal partners in care. We will never get healthcare, education and work support right unless we do it in partnership with people.

I am a long-standing champion of the vision pioneered by the group Social Care Future, which consists of people who use services and their families: that we all want to live in the place we call home with the people and things we love, in communities where we look out for one another and where we can contribute, doing the things that matter the most to us—not what somebody else tells us we want to do or should do, but what we ourselves want to do. That is the vision that Opposition Members are championing. In the 21st century, and in what, despite all our problems, is still one of the richest countries in the world, it should not be seen as extraordinary, but the truth is, I am afraid, that for too many of the 47,000 people in the UK living with Down syndrome, it remains far from reality.

Members have rightly spoken of the progress that has been made, but I think it is also important to use this debate to demonstrate how much further there is to go. The first issue I want to raise is that of health and health inequalities, to which many Members have referred. We know that people with Down syndrome are more likely to experience problems with their hearts, bowels, hearing and vision, and have an increased risk of infections. I think it disgraceful that so often the outcomes are so poor for people with Down syndrome because of what is known as diagnostic overshadowing, when symptoms are ignored and put down to Down syndrome rather than being diagnosed properly and addressed.

There are two issues on which I think we should focus. The first is the need to ensure that children with Down syndrome have the regular check-ups they need with paediatricians and GPs. We know that too many families find those services too hard to access, and the current number of vacancies in the NHS—133,000—as well as all the other problems that people are experiencing when trying to see GPs and other doctors are having an impact on that. When she responds to the debate, will the Minister tell us when we will finally see the Government’s workforce plan for the NHS? May I also cheekily ask her once again whether she will adopt Labour’s plan to bring about the biggest expansion of the NHS workforce in its history, which we would pay for by scrapping the non-dom tax status? Members will understand that I want to put forward practical solutions today and to be realistic about the challenges, and that is what I intend to do.

Does the hon. Lady accept that it is a question of not just the size of the workforce but their understanding of the problems? If in health, as in education and social care, the professionals are not aware of the difficulties faced by the population with Down syndrome, no number of extra professionals or services will make a real difference.

The right hon. Gentleman must have read the next line in my speech. Of course, it is not only an issue of staff shortages and vacancies. I think that the real issue, which the right hon. Gentleman mentioned earlier, is training. If people are not trained to understand an issue and to understand its manifestations, they will not be able to put it right. In some other areas, I have seen medical schools and universities pioneering new forms of training, in which those who have a condition and their families become part of the training module to explain what the implications are. I hope that the Minister will tell us what action the Government are taking in this regard, and whether the guidance that will be issued will involve changes within medical schools or for nurses and other healthcare professionals.

The second area in which progress is needed is social care. It is, I believe, the biggest area in which the right support for people with Down syndrome is too often lacking. Whatever Conservative Members may say, I think it is important to understand the context in which the Down Syndrome Act will be working, and to take into account the difficult situation relating to social care. Just last week, research from the learning disability charity HfT revealed that nearly half the social care providers in England have been forced to close part of their organisations or hand back contracts to councils as a result of cost pressures in the last year. More than half a million people are awaiting a social care assessment, a review, or the start of a service or direct payment, and a survey conducted by the Down’s Syndrome Association found that 43% of family carers said their adult child was in need of an assessment, with some waiting as long as two years for that basic service.

What all this means, of course, is that families tend to be left to pick up the slack, often having to leave their own jobs or reduce their hours because they cannot obtain the help that they need to look after their loved ones. The fact that there are 165,000 vacancies in the social care workforce is having an impact on the support that is available to families with Down syndrome. We need to address both the issue of the care workforce and wider reforms.

Last week, the Health Service Journal reported that there are due to be cuts in the money announced for social care reform in the 2021 White Paper. A sum of £500 million was set aside to improve the training and career progression of the care workforce, but the Health Service Journal said that that is going to be cut by half. It also said that the £300 million to better integrate housing, health and care is set to be cut, with cuts to the budgets for unpaid carers and the use of technology.

This is really important, because unless we join up services and support, people with Down syndrome will not be able to live the lives they choose. The issue of housing is critical. Just 28% of people with learning disabilities live in supported housing, yet we know that 70% of people with a learning disability want to change their current housing arrangements to give them greater independence. Will the Minister confirm whether those reports are true? Are the Government going to cut £250 million for improving the training of the social care workforce and £300 million from the budget to better integrate health, care and housing? [Interruption.] It is not a disrespectful question; it is a question that has a direct impact on the lives—

I said it was disappointing.

It is not disappointing; it is my job to hold the Government to account. I would like the Minister to answer that question.

The hon. Member for Southend West (Anna Firth) mentioned help to work, which I am passionate about. Work gives purpose, independence and dignity, but only 5.5% of adults with a learning disability in England were in paid employment as of 2020, yet 65% of people with learning disabilities say they want to go out and work. The hon. Member asked about what was happening in her constituency. I recently visited the Leicester Royal Infirmary, which is doing pioneering work with Ellesmere College, a college for students with special educational needs, to give them the skills and experience they need to get to work, with pioneering apprenticeships. I visited a young woman who was working in the hospital café. I asked her what she thought, and she said that her ambition now was to set up her own café and employ others. I think that shows that if people are given the chance and the support, real progress can be made.

The Down Syndrome Act presents a real opportunity for change. It creates a duty on the Secretary of State to issue guidance to relevant authorities on how to meet the specific needs of people with Down syndrome. That will cover many of the issues I have outlined, and I hope the Minister will update us on when it will start to make an impact on the ground. I understand that the call for evidence on the Act closed in November. When will we see the Government’s response? We need to act quickly to make real progress to transform the lives of people with Down syndrome and ensure they can live the life they choose.

I would argue that wider action is needed to support the NHS and social care so that we have the investment and reform we need to improve lives, but I hope the Minister will address in detail my questions about the reports. I understand that the Government will produce an update on social care, possibly next week. Will the Minister answer my question and say whether the funds the Government promised will be available?

I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all his hard work over the years campaigning and supporting people with Down syndrome. I, too, attended the reception on the Terrace earlier this week. I met lots of people from around the country, some with Down syndrome, but with campaigners, supporters, friends and family. In particular, I pay tribute to the National Down Syndrome Policy Group and its founders, Ken and Rachael Ross, who are in the Public Gallery.

I had the pleasure of meeting the advisory team this morning in No. 10, where we held a roundtable with young people with Down syndrome. They certainly put my feet to the fire with their questions and the progress they want to see. They have joined us this afternoon, too. Florence, Harshi, Ed, Max, Fionn, Tommy, Charlotte, James, Heidi and Rula asked extremely difficult questions, and I have promised to update them on progress. That just shows the strength of feeling and the range of support from people around the country.

As we celebrate World Down Syndrome Day and the achievement of those who suffer with Down syndrome, will the Minister join me in congratulating my constituent Jade Kingdom, who is now a Guinness world record holder as the first person with Down syndrome to complete a sprint triathlon. She overcame her health conditions to achieve this and raised £30,000 for the North Devon Hospice.

That is a fantastic achievement, and I congratulate Jade on her amazing ability. I wish I could do something similar.

Tuesday marked the 12th World Down Syndrome Day. My right hon. Friend the Member for North Somerset was not able to join us on the day because he was at the UN in New York to showcase the work done in this Parliament. Many countries are now looking to us as they try to do something similar. He has not only changed the lives of people with Down syndrome in this country; he is making a difference globally, too.

As part of the World Down Syndrome Day celebrations, I am wearing my different socks to showcase the three strands of chromosome 21, which apparently look like socks and are the cause of Down syndrome. The socks highlight Down syndrome and the amazing contribution that the incredible people with Down syndrome make to our communities and society.

The hon. Member for Glasgow South West (Chris Stephens) spoke about his constituent Danielle, her son Steven and the very real issues of diagnostic overshadowing. My hon. Friend the Member for Stoke-on-Trent Central (Jo Gideon) spoke about her uncle Donald and how difficult it was for her family. She also spoke about what life was like in the past for people with Down syndrome.

My hon. Friend the Member for Ashfield (Lee Anderson) spoke about Jossie, who I am sure has a wonderful future ahead of her. My hon. Friend the Member for Southend West (Anna Firth) spoke about David Stanley and the Music Man team, who cheer us up with their wonderful performances.

My hon. Friend the Member for Hendon (Dr Offord) spoke about the dancing ability of his constituent Michael. He also spoke about Liam. I am a “Coronation Street” fan, and Liam is not currently at Roy’s Rolls, but I look forward to his next episodes because he has a good sense of humour.

It is important to celebrate people with Down syndrome and to recognise the barriers they face. It was wonderful to see the actor James Martin win an Oscar for his brilliant performance, but we must not forget why we are here today.

The Down Syndrome Act became law in April 2022, and I will now update the House on its progress. My right hon. Friend the Member for North Somerset and the Education Secretary, my right hon. Friend the Member for Chichester (Gillian Keegan), ensured the passage of the Act. We all have a responsibility to make sure it is not the end of the story by implementing the Act and getting the guidance out.

At Downing Street this morning, the young people asked when we will see those changes. We will deliver guidance for professionals working in health, social care, education and housing, to try to bring together support for people with Down syndrome. The guidance will set out tangible, practical steps that organisations should take to meet the needs of people with Down syndrome. It will raise awareness of the specific needs of people with Down syndrome, and it will bring them together with the relevant authorities to make support more easily accessible.

We launched our national call for evidence in July 2022, in the spirit of “With Us Not For Us,” and we heard from hundreds of people across the country. We had more than 1,000 responses on the needs and asks of the various communities. I thank everyone who responded or participated in the focus groups. It is thanks to them that we received so much evidence, which officials are now going through to analyse the data. We will shortly provide a summary of the key findings.

It is essential that people’s lived experience informs the development of the guidance, and that people with Down syndrome are involved at every stage. We will shortly set up a working group to oversee the development of the guidance. Once drafted, the guidance will be subject to further public consultation to make sure we have it absolutely right.

My right hon. Friend the Member for North Somerset asked some practical questions about the guidance, and we recognise that the issues and the services supporting people with Down syndrome sometimes overlap with the issues and the services supporting other people with learning disabilities and learning difficulties, which we need to consider. But I am absolutely clear that this guidance is about people with Down syndrome, because we want to help as many people as possible, to make it feasible for relevant authorities to implement this guidance in practice and to ensure that there will be oversight of it in Parliament.

We are committed to considering the inclusion of employment and other public services through the call for evidence. We heard that best practice in supporting employment and benefits services is also going to be included in the guidance. We know that employment can have a significant benefit in terms of living independently and participating fully. That is why it is so important that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Corby (Tom Pursglove), has sat through this afternoon’s debate. He was also at the reception earlier in the week, along with the Education Secretary. This is a cross-Government approach, and we cannot act just with one Department on its own. That shows that the full strength of the Government is behind these changes. We will also be looking at transport and leisure facilities, and removing some of the barriers to enable people with Down syndrome to be able to fully participate in the activities that they want to do. We will be working with other Departments to consider how to best incorporate those areas into the guidance.

To ensure that the guidance is implemented in practice, every integrated care board will be required to have a named lead for Down syndrome. As my right hon. Friend the Member for North Somerset said, we want there to be a clear person accountable. The named lead will be responsible for ensuring that the Down Syndrome Act is implemented in practice. NHS England is currently developing its statutory guidance for ICBs, including for the Down syndrome lead role. Having a named lead for Down syndrome will help to ensure that the specific needs of people with Down syndrome are considered when services are designed and commissioned. One speaker this afternoon said that that would open the floodgates for change, but we absolutely need change to happen, so I do not necessarily have a problem with that. My right hon. Friend also touched on the school census. I wish to reassure him that although we have missed the deadline for 2023-24, we are looking at 2024-25 for this. We will be discussing that with the Education Secretary, because we recognise the importance of the school census and gathering that information.

I thank everyone who has taken part in the debate. It has been a consensual debate and it shows Parliament at its best when we work together to deal with these challenges. I pay tribute to the families, carers, organisations and professionals who work tirelessly on behalf of people with Down syndrome, but I pay a particular tribute to those with Down syndrome themselves. It is indeed “With Us Not For Us”—I absolutely get that message. That is why we are here today. I also want to pay tribute to the officials at the Department of Health and Social Care—David Nuttall and his team—who have got that message loudly too and are working with the community to make sure that the Act and the guidance address their needs. Next year, I am sure that we will update the House further on the progress that has been made.

With the leave of the House, may I thank all colleagues who have taken part in this debate? As the Minister just said, this is the House at its best, which almost certainly means, sadly, the media coverage at its least. As they say, “If you want a secret kept, say it in Parliament, outside Prime Minister’s questions.”

A couple of points are worth reiterating. There are those concerned about people with similar conditions to Down syndrome being left aside, but I do not believe that to be true, because of the measures that were considered and the commitments given in Committee by the Government. Although, again, it is worth pointing out that people with Down syndrome share a number of characteristics with other groups, they are, none the less, a discrete population. I wish the hon. Member for Glasgow South West (Chris Stephens) well in his attempts to get Down syndrome included in the Scottish Government legislation, because there is a problem of genuinely unintended consequences. Leaving it out could result in legislative overshadowing and we may unintentionally leave the Down syndrome groups isolated in their legal rights.

One thing that has come out loud and clear from this debate is the need for professional education, whether in health, education or social care. I worry about not only diagnostic overshadowing but social overshadowing, whereby the need for people to live, earn and be independent is hidden by a stigma, which is still all too prevalent and needs to be removed. We in the UK have taken a great lead on this issue, as was reflected at the United Nations on Tuesday. We should relish this challenge as a country. We talk about global Britain in a whole range of areas, including diplomacy and security, but should not one of the great challenges for global Britain be our setting an example on social care that the rest of the world wants to follow? That would be something to achieve.

Question put and agreed to.

Resolved,

That this House has considered World Down Syndrome Day.