Down Syndrome Bill

House of Commons, 26 November 2021.

Liam Fox (Conservative, North Somerset)

I beg to move, That the Bill be now read a Second time.

Before I turn to the purpose and contents of this Bill, let me begin with some thanks. First, I thank those who helped us out at our photoshoot the other day: Fionn, Max and Freddie. I am sure that all those Members who were there would like to add their appreciation. We are very sorry that it took so long, but we are very grateful to them for their patience and their fortitude. I also thank the 107 MPs who turned up to offer their support on that occasion. I thank the role models for those with Down’s syndrome, particularly Tommy Jessop and Bethany Asher, who have blazed a trail for others to follow.

I thank the co-sponsors of the Bill, my hon. Friend the Member for Bolton North East (Mark Logan), the hon. Member for Bristol North West (Darren Jones), my hon. Friends the Members for Bury North (James Daly) and for Carshalton and Wallington (Elliot Colburn), the hon. Member for Ceredigion (Ben Lake), my hon. Friend the Member for Don Valley (Nick Fletcher), the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), my hon. Friend the Member for Meon Valley (Mrs Drummond) and the hon. Members for North Antrim (Ian Paisley) and for Oxford West and Abingdon (Layla Moran). It is quite a roll of honour.

I also thank the organisations that have supported us, in particular Edel Harris, the chief executive of Mencap, Ken and Rachael Ross of the National Down Syndrome Policy Group and Portsmouth Down Syndrome Association, Sue Dennis and Joanna Thorn of Up and Downs Southwest and others including Positive About Down Syndrome, PSDS and Annabel Tall, my constituency assistant, whose son Freddie, who has Down’s syndrome, was the reason we first met when she came to one of my constituency surgeries.

Finally, I thank those who have helped us get the Bill to this point, especially the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), who has gone out of her way in the most exemplary fashion to help us get the Bill to the shape it is in today. I also thank David Nuttall, one of the civil servants in the Department of Health and Social Care, who has been instrumental in putting the Bill together. Civil servants do not always get fulsome praise on the Floor of the House, but let me say on this occasion that it is more than deserved. Finally, I thank David Goss in my own office, whose tireless efforts have helped Members of Parliament and those involved play a full part in where we have got to today. If I have missed anyone else, it is my memory, not my lack of appreciation that is at fault.

The first question that people have tended to ask about this private Member’s Bill is, “Why? Why this issue, and why now?” Let me answer that in three ways. First, there is the challenge faced by those who have Down’s syndrome. 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. Inevitably, their families, too, will face different challenges. They will come in the form of medical problems, educational needs and long-term care challenges.

Let me start with the medical challenges. The medical problems associated with Down’s syndrome can manifest in many ways. Congenital heart defects are often first. Approximately half of all infants born with Down’s syndrome have a heart defect. Down’s syndrome is a major cause of congenital heart disease and the most frequent known cause of atrioventricular septal defects. There is also likely to be: higher incidence of hearing loss and poor vision, with increased incidence of cataracts; orthopaedic problems, including hip dislocations; and, more seriously, leukaemia. Children with Down’s syndrome are at an increased risk of developing any type of acute leukaemia. In particular, they are 150 times more likely to develop acute myeloid leukaemia and around 30 times more likely to develop acute lymphoblastic leukaemia. There is also increased incidence of hyperthyroidism, low thyroid function, obesity and Alzheimer’s disease in later life. People with Down’s syndrome are also more prone to infection and may struggle with the respiratory infections, urinary tract infections and skin infections that the rest of the population will deal with relatively easily.

Next, we come to intellectual development issues, one area where public perception tends to be inaccurate. Although it is true that people with Down’s syndrome usually have some degree of developmental disability, it is often mild to moderate, which means that for many a fulfilled life with meaningful employment and social integration is possible. Lumping every child with Down’s syndrome into the category of “severe learning difficulty” is to fail to understand the reality and complexity of the situation.

Robert Buckland (Conservative, South Swindon)

My right hon. Friend has come to a very important part in his speech, because there is a real concern among people with Down’s syndrome and their families that the system or other people ascribe a value to their lives that they have no business in doing. The value of the lives of people with Down’ syndrome is immense, and what we should be doing is making sure that they can access mainstream services just like the rest of us, rather than ascribing some sort of lower value to the quality of their lives.

Liam Fox (Conservative, North Somerset)

I am grateful to my right hon. and learned Friend, because he makes an important point that I will return to later about the need for dignity and independence, and to stress that there are no second-class citizens when it comes to Down’s syndrome.

Mark Pawsey (Conservative, Rugby)

I congratulate my right hon. Friend on introducing this Bill and securing Government support for it. He gave a roll call of organisations that support people with Down’s syndrome, many of which are local. I wish to give credit to the great work of New Directions in my constituency and the support it provides to people with Down’s.

Liam Fox (Conservative, North Somerset)

I am grateful to my hon. Friend, who is correct in what he says. I am sure that Members who speak in this debate will wish to highlight charities and other groups in their constituencies that play a major supportive role and without which parents would find it much more difficult, as would people with Down’s syndrome, if that help were not there. We could all spend pretty much all day going through a range of different groups, and I reiterate that if I have omitted any in my introduction, I apologise for doing so.

The second reason for bringing this Bill forward is that we are dealing with a defined population—about 47,000 in the United Kingdom—who have a clear diagnosis. Trisomy 21 will not be confused with any other condition. At this point, it is worth my saying a word about mosaic Down’s syndrome, which affects about 2% of those with Down’s syndrome. For children with mosaic Down’s syndrome, some of their cells have three copies of chromosome 21 but other cells have the typical two copies. For the purposes of this Bill, it is my intent that this group should have the same application of provisions as others.

I come to this issue from many different angles—personal, medical and political. When I was growing up, the boy next door to me, Drew Houston, had Down’s syndrome. What is interesting is how as a child it is so much easier to accept difference and to accept people for what they are, rather than putting categories on to them—would that that would continue through all our lives. As a GP, I, naturally, dealt with individuals and families who had the range of medical conditions that I mentioned earlier. As Members of Parliament, we can all recognise why there is such widespread support for this Bill throughout the House, because we have all had to deal with the complexity of issues involved here. We are talking not just about a learning difficulty, not just about a range of medical conditions or not just about social care here; we are talking about a plethora of issues that can affect families and it can be energy-sapping for parents and individuals alike to have to deal with those number of challenges simultaneously and for a very long time.

I have a slightly odd personal link to that, as I worked at the genetics laboratory at the DuPont Institute in Wilmington, Delaware, which is well known to the current American President—the institute, not me. Studies have indicated that single palmar creases, which used to be known as simian creases, are observed in 28% to 86% of people with Down’s syndrome—it is one of the things that doctors look at—but in only about 1.5% of the rest of the population. I am part of that 1.5% with a perfect single palmar crease, so I was one of those whose chromosomes were checked while I worked there.

I digress. The third reason why the Bill is timely and necessary is that of life expectancy. When I was born, the life expectancy of someone with Down’s syndrome was 13 years. By the time I became a junior doctor, it was 30 years. Today, it is 58 years and people with Down’s syndrome are now living into their 70s. That makes a huge difference, because they are the first generation who will outlive their parents, and that has been a major impetus for me to bring the Bill forward.

In medicine, we have made huge improvements in dealing with congenital heart disease; ear, nose and throat conditions; and leukaemia. When I took up my first medical job in haematology-oncology in the Glasgow Royal Infirmary in the early 1980s, we were in the early stages of developing the treatments for leukaemia that have brought us to the position that we are in today. Today, successful cardiac surgery allows many Down’s syndrome children with heart conditions to thrive as well as any other child with Down’s syndrome born with a normal heart.

Interestingly, the cure rates for some leukaemia patients with Down’s syndrome are exceptionally high compared with the general population. In general, the cure rate for childhood acute myeloid leukaemia is already very high at about 75%, but Down’s syndrome children with a specific sub-type of AML called acute megakaryocytic leukaemia have an overall survival rate of about 80% to 100% compared with only 35% in non-Down’s syndrome children. It is thought that the same genetic mutation that leads to leukaemia in those children also helps them to respond better to a certain type of chemotherapy.

It has been found, however, that the cure rate of acute lymphoblastic leukaemia is slightly lower in children with Down’s syndrome than that expected in the general population, at about 60% to 70% compared with 75% to 85%. That is perhaps due to the fact that, as I mentioned, children with Down’s syndrome are more prone to infections and more likely to suffer from toxic side effects of chemotherapy than other patients.

As I mentioned, perhaps the greatest impact of the much to be welcomed improvements in life expectancy and health outcomes is the additional pressure on parents. It is extremely difficult, if not impossible, for most of us to understand what it must be like to wake up every morning and ask, “What will happen when I am not here?” We have a chance to lighten that burden on the parents of children with Down’s syndrome.

Lia Nici (Conservative, Great Grimsby)

I wholeheartedly support my right hon. Friend’s Bill. On that point, does he agree that it is important to make sure that people with Down’s syndrome and other learning difficulties have the right to services when they are younger because it is vital to ensure that they are as independent as possible as adults, so that parents and carers feel that their children will have a good, long, healthy life?

Liam Fox (Conservative, North Somerset)

I completely agree with my hon. Friend, and I will come to the point about early intervention later because it is key, as in so many other things, to good outcomes.

The effects of this Bill should be a genuine example of what we talk a lot about these days, which is levelling up. In most parts of the country, our healthcare is good, reflected in improved health outcomes and life expectancy. When it comes to education, especially special needs, every Member of this House of Commons will be aware that it is patchy. We would do well to level up to the level of the best when it comes to special educational needs. However, when it comes to social care, the understanding of the implications of the increased life expectancy has not filtered through to every local authority that needs to make plans for long-term healthcare. I feel this is one of the most vital elements in bringing forward this legislation, because what would be completely unacceptable, a stain on our country and a scandal is to see those whose parents have died being, in future, placed in inappropriate institutions—in elderly care homes or, worse, mental health institutions. That is something that I think would bring shame to our country, as well as an utterly inappropriate lifestyle for those to whom we should be giving the best possible care.

Our improvements need to be mirrored across all our sectors. This Bill will result in the respective Secretaries of State giving instructions to local health authorities, clinical commissioning groups, local education authorities and local authorities in charge of long-term care to ensure that they make provision for, in the words of the Bill, “persons with Down syndrome”. Of course, it would be nonsensical for us to freeze the position in which we find ourselves today, which is why we require flexibility in the Bill. That is why it sets up an advisory committee, which will help the Secretary of State change those instructions as necessary and as conditions, the quality of our medical care and understanding improve over time.

There is one thing the Bill does not currently deal with, but it will when it comes back in Committee, and that is the issue of redress, for having increased rights is of no use if they cannot be enforced. Of course, the standard reply of what some people who no longer work in Downing Street prefer to call “the blob” is that the redress should be either a judicial review or to bring a civil case in the courts. To families fighting to get provision across medical services, educational services and social care, that is almost an insult.

We need to find ways of redress that are efficient, quick and cheap if we are to deliver on what I think everyone in this House believes to be the purpose of the Bill itself. I have discussed this extensively with the Government, and we were not quite able to bring in the provisions I wanted in the form that the Bill would require, but the Government, as I am sure the Minister will confirm later, intend to bring this forward as an amendment in Committee. It is far better that we get the right provisions in the Bill than that we go off half-cock now and have to amend them later. Let us get it right, not least so that those in the other place know that we have full agreement across the Bill in the House of Commons.

There are those who seem to imply that those with Down’s syndrome can just be grouped with various disability groups for whom legal provision already exists. I have to say that, in the last few days, I have become somewhat surprised at where some of these voices have come from. Let me be very clear—this goes to the point my hon. Friend made a few moments ago—and this is what Tommy Jessop’s mum told me this morning:

“People with DS are identifiable with identifiable characteristics but many are not getting the help they need. There are specific medical needs that need to be addressed. There are specific identifiable ways of helping them to learn. And there are identifiable strategies for helping them physically. Eg developing muscle tone or specific speech therapies”.

That was the very point about early intervention that my hon. Friend made in her intervention.

Our improvements in care have brought huge benefits, including increased life expectancy, but they also bring new challenges as those with Down’s syndrome increasingly outlive their parents. Without our actions, perfectly preventable human tragedies would occur, and if there is any point in our being in politics surely it is to ensure that such tragedies do not happen.

Ruth Jones (Labour, Newport West)

The right hon. Gentleman is making a powerful speech and I whole- heartedly support his Bill. As a paediatric physiotherapist in a former life I spent a lot of time working with brilliant groups, and my time with the self-help group for the Down’s syndrome children and their parents was among the best and happiest; it was really useful and hopefully the parents got the support they needed because it was all-encompassing and all-groundbreaking—social care, health, speech and language, audiology. Does the right hon. Gentleman agree this is the way we should go forward and that it is very important that these families get the support they need from the very beginning?

Liam Fox (Conservative, North Somerset)

The hon. Lady makes a powerful point: there must be a holistic approach because although the delivery of government exists in the silos of health and education and social care, the needs of patients do not. The complex, interactive needs of patients must be dealt with in exactly the holistic way she describes, and hopefully this Bill will ensure that that integration occurs to a greater degree in the future than, sadly, it did in the past.

The hon. Lady also makes the good point that today we are seeing an example of Parliament at its best: united across the traditional party divides to deal with an issue we have all experienced and where we all know things have to improve. I hope that while this Bill, to my regret, applies only to England, we will soon find ways to make its provisions available to all parts of the United Kingdom.

Ian Paisley Jnr (DUP, North Antrim)

rose—

Liam Fox (Conservative, North Somerset)

Unsurprisingly, I shall give way to the hon. Gentleman.

Ian Paisley Jnr (DUP, North Antrim)

I congratulate the right hon. Gentleman on what he has said so far. It is unfortunate that legislative consent is not going to be considered in Scotland or Wales yet, and we hope we can encourage them to take that on and drive it forward. I hope the Northern Ireland Executive Minister of Health will adopt this and we will be champions together in this groundbreaking legislation.

Liam Fox (Conservative, North Somerset)

I am grateful to the hon. Gentleman for his point and perhaps I should explain why we did not bring this forward as a whole of the United Kingdom Bill. I did not want this to become an argument about the rights and wrongs or responsibilities of different parts of devolved Administrations in the United Kingdom; it has to be about people. If we can encourage other parts of the UK, through whatever systems of government are responsible for these issues, I hope the unity that exists across the House and the fact that this Bill was sponsored by all parties in the House of Commons will be a guiding light to those other parts of the United Kingdom about the urgency of making these rights available to all.

I end on the following point. This is not a Bill about a condition. It is not about dealing with Down’s syndrome; it is about people who deserve the same ability to demand the best health, education and care as the rest of our society. It is not on our part an act of charity; it is an act of empowerment and a recognition that all members of our society must have a right to respect, independence and dignity. That is why I have brought this Bill forward.

Suzanne Webb (Conservative, Stourbridge)

Will my right hon. Friend give way?

Liam Fox (Conservative, North Somerset)

No, as I am concluding.

For all the Drews, Freddies, Maxs, Fionns, Tommys and Bethanys it is not our voices that resonate in Parliament today, but theirs, and my message to them is, “You have been heard, at last.”

Douglas Chapman (Scottish National Party, Dunfermline and West Fife)

I thank the right hon. Member for North Somerset (Dr Fox) for not only initiating this important Bill but taking it to its Second Reading today. Many will be watching the debate, and the progress of the Bill, with great interest. Perhaps one of the reasons for that is that many people know people with Down’s syndrome, either as family members or relatives, or from their work in the community. They also know and appreciate the joy that Down’s syndrome children and adults bring to the community, the amount of love they give and what they contribute to their family, their school, their college, their workplace or their community.

I am a dad who would not change a thing; we have, in our son Andrew, a young man of whom we are very proud. While young people with Down’s syndrome can have superpowers—I believe they really do have superpowers—many need varying levels of support from their local NHS, their teachers, their education professionals and the local council to ensure that essential services such as housing, appropriate care and job opportunities are available to them.

The right hon. Member and many other Members have mentioned the voluntary sector and the support that it provides. I think there are many parents who would be quite lost if that support was not forthcoming from the voluntary sector. Let me give a special mention to Down’s Syndrome Scotland and, more locally in my constituency, Disability Sport Fife, which does a tremendous job to integrate people with a range of difficulties into sport. As I say, it does a fantastic job, and that needs to be recognised. No one said that being a parent is an easy job, but supporting parents and children who have that extra chromosome makes our society a better place, and this Bill will provide improved support so that lives can be lived with more ambition, fulfilment, independence, care and protection.

Finally, I thank the Government for their support for the Bill. I hope that, should it be passed, our colleagues in Wales, Northern Ireland and Scotland will look at it sympathetically and introduce equivalent measures across the UK. I wish the Bill Godspeed.

Charles Walker (Conservative, Broxbourne)

Thank you, Mr Speaker, for making special provision for my guest today, who is up in the Public Gallery. Corina Gander and I met at 7.15 am in a very cold car park in Cuffley with our walking shoes. As you are aware, Mr Speaker, there are problems with transport today, so we arrived in Moorgate and then spent an hour in the rain getting here, but it is an important occasion and we both wanted to be here. Corina is the mother of Daisy. Daisy has Down’s syndrome, and she is going to be watching this with her mum later tonight on Parliament TV, as will Daisy’s four sisters and her proud grandparents.

I first met Corina nearly two years ago. She came to tell me, in no uncertain terms, that what was happening in Hertfordshire was not good enough; there was not enough support for her and her daughter. I did not know a huge amount about Down’s syndrome then—I know a lot more now—but I said to her, “So what are the problems?” My right hon. Friend the Member for North Somerset (Dr Fox) brilliantly identified them in his introductory speech.

“Fundamentally,” Corina said, “the illness is just not taken seriously. When my daughter was born, she had terrible breathing difficulties. I kept saying to the doctors, ‘My daughter is struggling with her breathing,’ and they said, ‘Well what do you expect, Corina? She has Down’s syndrome.’” Then, one day, a health visitor came who had a relationship with the family, and she said to Corina, a worried mother, “What would you do, Corina, if this was one of your four other daughters?” Corina said to the health visitor, “I’d take her to A&E.” The health visitor said, “Well you know what to do, then, don’t you? I’ll hold the baby; you get your coat. We’re going to A&E.” That child, Daisy, was on life support for a month and then spent another three months in hospital. That is the stigma that my right hon. Friend is trying to address today.

Beyond stigma, my right hon. Friend identified other areas that need to be addressed—fragmented services, for example. At the moment, services are almost always fragmented. A young child will need physiotherapy, which will be in one place. Occupational therapy will be in another place. Speech and language will be elsewhere. Community paediatricians will be in another place. Then there are opticians, audiology and so on. It can be exhausting to navigate specialist services, but particularly so when one has a child who is very demanding of one’s time and other family commitments. We need to make it easier for parents to get the support that they need and, most importantly, their children need.

Ruth Jones (Labour, Newport West)

The hon. Gentleman is making a powerful speech in support of the Bill. He highlights a very important point about the need for integrated children’s services. At Serennu children’s centre in my constituency, all the services are under one roof, including the voluntary sector, and it is a comfortable place for families to go to. Children are not scared and families are not anxious. Does he agree that that is the best way forward?

Charles Walker (Conservative, Broxbourne)

The hon. Lady—I think we are all hon. Friends today—anticipates the next part of my speech and I will not detain the House for too long.

Members of Parliament love to take credit for all the wonderful things they do, but I take no credit for this at all. This is entirely down to Corina. She said, “Right, Charles, you seem like a motivated, engaged individual. Let’s convene a meeting of all the people who matter to me and my daughter.” So we did that and I actually came up with a few names that were not on the list.

Who did we have on the list? We had the wonderful Alison Patrick, who is a fellow traveller and parent. We had an amazing man called Dr Nick Cholidis, who is Daisy’s consultant, because consultants need to be absolutely at the centre of this. We had the wonderful—and I do say wonderful—county councillor, Teresa Heritage, who is the cabinet member for children, young people and families. When we were travelling up on the train, Corina and I did say that she was a diamond. It is not often that we identify county councillors as a diamond, but she is a diamond and I hope she is listening. It is a function of modern politics that everybody has very, very long titles, so I do apologise. We also had Dr Jane Halpin, joint CEO of Hertfordshire and West Essex Integrated Care Systems and clinical commissioning groups. I must also give a special mention to Sally Orr of the CCG and Andy Lawrence, Hertfordshire County Council’s lead for social care.

Now, why are all those names important? Because the point of my right hon. Friend’s Bill is to bring services together and integrate them.

Liam Fox (Conservative, North Somerset)

I am very grateful to my hon. Friend for giving way. Everything he says is absolutely correct. Does that not have an added importance in an era of greater life expectancy, when we can no longer depend on parents taking those with Down’s syndrome to services? Those services must be able to be independently provided to those who need them, without the need for parents to be a part of the equation.

Charles Walker (Conservative, Broxbourne)

My right hon. Friend is so right. As a constituency MP—we are all constituency MPs first and foremost—like him, I have met parents in their 70s and 80s who are distraught and worried, as they know their time on this earth is coming to an end and they are so concerned about the welfare of the children they love. I expect all of us have seen that or will see that during our time in Parliament, and thanks to my right hon. Friend we can now begin to alleviate that grinding worry that parents have.

We convened that wonderful meeting and something amazing happened: we got a Down’s syndrome therapy advice clinic in Hertfordshire Community NHS Trust. We now have an integrated therapies advice clinic in place in Hertfordshire. It is only a pilot, but it is being run in the community hospital in Welwyn Garden City. It is in the constituency of my right hon. Friend the Member for Welwyn Hatfield (Grant Shapps), but I feel I can mention it because my constituents use it as well. I am so pleased that as a result of an intervention—as a result of parents wanting to get the very best for their children and engaging with a variety of service providers, as the hon. Member for Newport West (Ruth Jones) mentioned—we are actually making progress.

The Minister, in her wonderful “Dear colleague” letter, made it clear that there will be a consultation process. My right hon. Friend the Member for North Somerset is looking forward to that process because he wants to get more from Government, and who would dare to resist him in those demands and requests put so charmingly? I will participate in that, Corina will and many, many people in Hertfordshire will want to take part.

But Members of Parliament are very good at knowing best, and Corina, on the way in, said, “Charles, I’ve written you a little note in case you can’t think of what you want to say”. I am going to read her note word for word. It is 220 pages—no, 220 words; my speech was 220 pages. It will take one minute and then I will firmly sit down back in my seat, on my backside.

Corina said:

“Can you imagine being born a little different, just a little. Imagine with that difference comes challenges. Everything takes time. You have to work so much harder to reach the milestones but you do reach them it all just takes a little longer and a lot of determination. Yet with the support of Health services and local authorities your life is easy because you receive all the help available to enable you to achieve. Now imagine you have Down syndrome and being told because you look a little different those services are not available to you.

Accept your difference and just get on with it. A facial feature should never determine the care and support someone receives.

We are all born equal and a disability should never deprive anyone to a great quality of life.

Every child with Down syndrome will grow into a successful adult we just need our health services and local authorities to help parents in guiding them there.

Not much to ask really.

I can guarantee you that you will never meet a more stronger determined person than that of someone with that extra chromosome, but no one should need to get the strength and determination from having to fight everyday of their life.

Those battles need to end, parents need to be parents and we all need to recognise that having Down syndrome is really just being a little different.”

I thank my right hon. Friend for what he is doing today. He is an inspiration to 47,000 people and all their parents, and all of us.

Ian Paisley Jnr (DUP, North Antrim)

Thank you for calling me in this debate, Mr Speaker. It was an absolute honour to be asked to be a joint sponsor of the Bill by the right hon. Member for North Somerset (Dr Fox), and I congratulate him on the way in which he has manoeuvred this piece of creative legislation through the minutiae of Government and civil service—not only to get it to the Floor of the House, but to do so with a fair wind from Government. The indications from Government are that they will support and endorse what is trying to be achieved.

It is amazing, when we read the terms of the Bill and think about what it tries to achieve, that this has not been done before. That is what is so groundbreaking about it. This was a clear and obvious gap that the right hon. Member, through the discoveries he made, realised needed to be plugged. The Bill will do that. It is also a fine example of where private Members’ Bills come into vital use. This House would be poorer if private Members’ Bills were not part of the democratic process in our nation. That is very important.

When we come into this House on a daily basis, we probably do not notice the architecture or the windows in the way that many people do. However, the huge window that we see as we walk into St Stephen’s Chapel and through the hallway there is the equality window, on which there are the scrolls of rights and equality legislation that this House has been engaged in over the centuries. This Bill is landmark legislation. It will stand with that equality and rights legislation. That is how important the Bill is to the House and to the nation. We are saying, “Yes, people with Down’s syndrome are different, but they are equal, and this makes them equal under the law—equally entitled to all the rights and liberties that our laws provide for every other citizen.” That is what is so crucial about today’s debate.

Two Down’s syndrome babies are born every week in Northern Ireland—there is a high prevalence there—but that is not something to be scoffed at; it is something to be celebrated. This is an instance in which we celebrate life and we cherish life, and the fulfilment that that life can give. The Bill will help to normalise that sense of celebration: if people are given everything to live for, they will lead fulfilled and proper lives.

We have seen some impressive and inspirational accounts of the Down’s syndrome experience in Northern Ireland and what parents have done. They share the view that that Down’s syndrome experience is equal, which is why this law is needed to encourage the various authorities in Northern Ireland to support it. In our newspapers recently we read the story of little Jacob Smyth, whose mum and dad, Ciara and Adam, helped to set up a charity called Joy 21 after he was born. That charity shares the very positive message of what having a Down’s syndrome child means, and all the things that can be done to ensure that that child has a full and fulfilled life. There is no doubt that if a child is raised in a positive atmosphere, no matter what disadvantages people may say are involved, that positive environment will help to create the circumstances of a full and vital life.

Another positive story is that of Grace Wilson, a 14-year-old girl from Newtownabbey. When she was born, people were saying to her mum and dad, “Sorry about the circumstances.” The parents were not sorry about the circumstances; they were joyous to have a lovely little girl, and that little girl has exceeded all their expectations, because mum and dad made sure that she was mainstreamed, and was seen not as different and excluded but as part of our society. That is what changed little Grace’s life and made her exceed all her parents’ expectations.

If we limit people’s expectations by lowering their horizons, they will have less fulfilled lives. If we allow them to aim for the highest horizons possible, they will have the most fulfilled lives possible. The Bill allows that to happen, because it makes it clear that the Government must take account of the specific needs of people with Down’s syndrome when exercising their “relevant functions”, and must have due regard to the guidance issued by the Secretary of State when exercising those functions as set out in the Bill.

Another story is that of William Graham, a councillor from Bushmills in my constituency whose son has Down’s syndrome. That lad has always been part and parcel of the community, and he and his parents exemplify the fact that there is nothing different here—“nothing to see here”. This young lad leads a normal life. He works on a farm like other kids in the area, and has grown up to become a key member of his community.

We must ensure that this Bill allows people to see that where there is difference there must be equality—that where there is difference we can also be equal. I hope that the legislative assembly in Northern Ireland, the Scottish Parliament and the Welsh Assembly will all grant legislative consent. I believe that today is a landmark day, which will go down in history as the day when this process really got under way, and that our legislators will follow in this groundbreaking and world-leading piece of legislation. I commend it to the House. I also thank the Minister for the note that she gave us all earlier this week, indicating that the Government support the Bill and want to drive it forward.

Flick Drummond (Conservative, Meon Valley)

My neighbour Matilda has Down’s syndrome. She is now 14, and I have watched her grow, develop and participate fully in family life. I have seen her going to school, running, cycling—occasionally somewhat precariously—and playing tennis, as well as being part of a street dance team. Life seems pretty typical for her. She goes to a mainstream school, Admiral Lord Nelson School in Portsmouth, where she is very much part of school life.

Yet I am aware of the barriers placed in the way of Matilda’s development, from accessing the school of her choice to having the right healthcare and, particularly, appropriate speech and language provision. Some of the simplest decisions are made very tricky because, although the decision of the parents and the individual is often taken into account, they have to interact with many Government agencies, as others have mentioned, which takes time. They sometimes have to fight for provision, which takes time. All of this is happening when they are just trying to enjoy family life.

From early on, I became acquainted with an incredible organisation in my then constituency called Portsmouth Down Syndrome Association, which has paved the way for many children in Portsmouth and the surrounding area, including Meon Valley and beyond, to be properly supported in education and to be given better access to healthcare; their needs are better met because the charity provides training to the health professionals involved. It is a place where new parents can meet others straightaway and have a wonderful support network around them, but perhaps most importantly, because the charity is involved in so many areas of day-to-day life, the support can be taken for granted.

The celebration of inclusion means that Portsmouth and Meon Valley see these children everywhere. The awareness that has been raised by this charity through clubs, societies, nurseries and schools has meant that the path for children with Down’s syndrome has got a lot better than at any time I have known.

As the MP for Meon Valley, I now have the founders of Portsmouth Down Syndrome Association, Rachael Ross MBE and Ken Ross, as my constituents. I cannot see them in the Public Gallery, but I know they are listening because they have been on the radio and various other media over the past few days. They have been instrumental in helping with this Bill. Many hon. Members will have met their son Max at the drop-in event on Tuesday, and I have followed his progress through school and into college. I have seen what he has managed to achieve through properly adapted processes delivered by this charity, and I am excited for his future.

However, from speaking to many colleagues, I know these stories are not typical of the outcomes, or at least of the outcomes they are aware of in their constituencies: families with little support from external bodies and children who are faced with struggle at all stages of their childhood, with very little prospect of employment as adults.

Mencap and NHS England reported in 2018 that only 6% of adults with a learning disability who are known to local authorities had a job. It is fundamentally not right that, due to a lack of awareness, in many parts of the country people with Down’s syndrome do not have the same opportunities that I see supported and delivered where I live by Portsmouth Down Syndrome Association.

It is also not right that these services have to be delivered by charities, when the state, with specialist advice, is capable of stepping in to support in these areas. As a consequence, when my good friend and colleague, my right hon. Friend the Member for North Somerset (Dr Fox), tabled the Down Syndrome Bill, I jumped at the chance to support him. I am honoured to be a sponsor of this Bill.

The framework delivered through this Bill will have lasting and far-reaching benefits for people with Down’s syndrome in England. I pay tribute to Ken and Rachael Ross and to Annabel Tall for all their work on this landmark Bill. I am extremely grateful that the Government have agreed to back the Bill, and I look forward to ensuring it becomes an Act that will help to transform lives.

Meg Hillier (Labour/Co-operative, Hackney South and Shoreditch)

I also congratulate the right hon. Member for North Somerset (Dr Fox) and pay tribute to Portsmouth Down Syndrome Association. I grew up in Portsmouth, and it is not a big place, but the association has a reach that seems to have helped Members on both sides of the House and across the country. I thank the National Down Syndrome Policy Group and the all-party parliamentary group for Down syndrome, which between them have led to the right hon. Gentleman tabling this world-leading Bill.

Just before the 2019 election, there was a lonely group of women standing in the Upper Waiting Hall with an exhibition about the challenges of being parents of children with Down’s syndrome—everything from maternity to education. It was bad luck they chose a difficult time to be here. I was about the last person in the building, and they were not able to speak to many Members, but they were determined and others since have been determined, and they have led to this point today. They got the all-party parliamentary group going and this Bill in place. It is always tempting when we get the chance to run a private Member’s Bill, because we get so many requests, so I pay tribute to the right hon. Gentleman for choosing this issue.

The Bill is long overdue. People with Down’s syndrome have additional challenges, but they are human beings and they have human rights. This is, in essence, human rights legislation.

We know the challenges: the National Audit Office and the Public Accounts Committee, which I have the privilege of chairing, have highlighted the lower health outcomes of people with learning disabilities in general, and there are particular issues for children and young people with Down’s syndrome. There is currently no specific requirement for people with Down’s syndrome to receive adapted services so, by obliging the Secretary of State to provide guidance, the Bill is a really important step. That guidance is needed in so many areas, including health, education, social care and, crucially, employment.

The right hon. Member for North Somerset highlighted the important issue of life expectancy, which was echoed by the hon. Member for Broxbourne (Sir Charles Walker). So many parents are worried about what will happen to their child as they grow up. People with Down’s syndrome are living longer, which is fantastic news, but any parent of any child with a disability, including a child born with Down’s syndrome, worries about what will happen to them. The state has needed to step up for some time, so I congratulate the Minister for giving the Bill a fair wind today, because it will provide some reassurance to parents.

I wish to pay tribute to my constituent Godwin, who is 17 and whose parents, to whom I also pay tribute, have spent some time sharing their experience with me. Godwin has been mainstreamed through education in Hackney and is now in sixth-form college, but he is approaching a difficult point and there is a challenging time ahead. It has not been an easy ride all the way through, but employment is the next step. His parents tell me that they are told too often that catering is the answer. As others have highlighted, only 6% of people with learning disabilities are in employment. There have been prejudices in maternity care and information and in education; we need to see that step change and the provision of support for a range of employment opportunities. That will be a challenge.

The Bill is right to require the Secretary of State to provide guidance, updated as necessary. We have previously had debates about what someone is paid to do a job and what a job is; a job is about human dignity and purpose and we should not write people off when they have come through mainstream education or narrow their opportunities. There are people with Down’s syndrome who are mainstream actors and mainstream in other roles, but they are the exception, not the rule. I hope the Minister will work with colleagues across Government to make sure that these issues are raised in other Departments.

There is currently no formal advice, even in respect of education. Godwin was well supported, but even then there were challenges. It is not difficult to train teachers. If people are trained in how to speak to someone with Down’s syndrome and explain what is required of them, that will benefit all children in the classroom.

One thing that I have learned about people with Down’s syndrome is that they are incredibly patient, but now is their time. They have waited long enough, and we must do all we can to ensure that this legislation leads to the correct services and support being available to them. The Bill is the first step, but, as we have highlighted repeatedly, paid employment is an issue, education support is patchy, health outcomes are still poor and parents worry about their children as they become adults.

This is a human rights Bill, but we need not just to pass it; we need to challenge the Government—I know the Minister will be up for this—to set metrics and targets and to measure every year the progress we should see in outcomes for people with Down’s syndrome. There is still a lot of heavy lifting to do. This Bill is a welcome beginning, but I think everyone in the Chamber stands four-square with the Government and the right hon. Member for North Somerset, and with all people with Down’s syndrome in this country and their families, in saying that we will keep watching and make sure that this legislation is implemented by this Government and Governments to come.

John Lamont (Conservative, Berwickshire, Roxburgh and Selkirk)

I am delighted to speak in this debate. Like others, I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on bringing the Bill forward and championing this worthy cause. I also pay tribute to the tireless work of others involved in this important campaign. Indeed, earlier this week I had the pleasure of meeting Tommy Jessop, who has been instrumental in spearheading the campaign.

A legitimate question might be why I am speaking in today’s debate, since hon. Members will be aware that health policy is a devolved responsibility of the Scottish National party and Green Scottish Government in Holyrood, so the Bill before the House does not extend to my constituents in the Scottish Borders. Given how much the Bill will improve services and life outcomes for those with Down’s syndrome, as we have heard throughout the debate, I am disappointed that corresponding legislation has not yet been introduced in Scotland. I am conscious that the hon. Member for Dunfermline and West Fife (Douglas Chapman), who is representing the SNP today, has indicated his support for the Bill; I think we would agree that we both want to see the SNP and Green Administration in Edinburgh bring forward similar legislation in Scotland as quickly as possible.

This Bill places a statutory duty on relevant authorities in England to ensure a level playing field for people with Down’s syndrome within the wider group of those with learning difficulties, so that the specified authorities take specific account of the unique needs of people with Down’s syndrome when planning, designing and providing services. I call on the Scottish Government to ensure that that level playing field does not stop at the border, just south of my own Scottish Borders constituency. One baby in every 1,000 born in the United Kingdom is born with Down’s syndrome, and around 40,000 people living in the UK today have Down’s syndrome. Of course, many of them live in Scotland, so I hope my participation in the debate will raise awareness in Scotland and highlight the need for this important legislation to be introduced across the entirety of the United Kingdom.

Turning to the Bill itself, clause 1(1) states:

“The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.”

After the guidance is published by the Secretary of State, the Bill imposes on relevant authorities a duty to have due regard to it. My question to my right hon. Friend the Member for North Somerset is how a postcode lottery will be avoided in that scenario, given that different authorities will be able to have different due regard to the guidance and subsequent delivery and provision of the various services. Perhaps, during the course of the debate or in later discussions, he could clarify how that postcode lottery might be avoided.

I am very pleased to be able to speak in this debate. Although it is related to services in England, it raises awareness of the increasing support, recognition and opportunities for those living in Scotland and in my constituency in the Scottish Borders who have Down’s syndrome. I pay tribute again to my right hon. Friend for introducing this Bill.

As we have heard today, Down’s syndrome affects a person’s development in many ways, but it is not the most important influence in how that person develops and lives their life. What happens after birth is far more important in shaping the outlook for a person with Down’s syndrome. Many people with Down’s syndrome are likely to need some level of support to enable them to achieve the same kind of life most people take for granted, so I am delighted that this Bill is before us today and goes some way to delivering those aims. I commend the Bill to the House.

Suzanne Webb (Conservative, Stourbridge)

I thank my right hon. Friend the Member for North Somerset (Dr Fox). I am thrilled to be here in support of this Bill, a Bill that will destigmatise Down’s syndrome, and its ambitions. The hon. Member for North Antrim (Ian Paisley) asks, “Why didn’t we think of this before? Why haven’t we done this sooner?” and he is right.

When I was doing my research for the debate, I found the information online about the syndrome very factual. It fails to say what amazing people those with Down’s syndrome are: people who make significant positive contributions to society, living fully independent and semi-independent lives, achieving more than ever, attending mainstream schools, passing exams, gaining employment, getting married and, of course, becoming actors.

From the age of 17, I spent 13 years doing Birmingham PHAB Camps, which are holidays for those with a physical or mental impairment or learning difficulty, including those with the syndrome. The other half of the group were those who were socially disadvantaged. The aim of the holidays was integration and, of course, a thumping great holiday. The important thing about the holidays was that, by midweek, there was a blurring of lines about who we were. No one would have been able to tell the difference between volunteers, people with a learning difficulty or physical impairment, or those who may have had Down’s syndrome.

The holidays achieved their aim and were such great fun. They were the best one-week holidays ever, learning the importance of inclusivity and parity of esteem for all. It was about integration of everyone, regardless of perceived disability. It was about integration of everyone, regardless of perceived disability. It was about independence for those on the holiday; everyone had a role to play. At the start of the week, there was a distinct unfamiliarity with those who were perceived to be different. By the end of the week, there was total integration and a clear understanding that a disability does not define anyone. It showed how important it is to ensure that where possible, those with the syndrome can live a life of independence, and that they should not be marginalised or seen as a problem. My right hon. Friend the Member for North Somerset, in wrapping up, said basically that we should be defined not by who we are, but by our talents, and I completely agree. We should not be defined by a physical, mental or learning disability, and no one should be defined as a second-class citizen.

Those holidays were just the best times—rattling around the Welsh countryside in beat-up minibuses, days on the beach and the infamous last night party. The holidays were also very much about friendships and connection, and I have so many fond memories. We all have a unique connection for our whole lives, and many of us are best friends for life—Tommy, Dave, Dawn, Nursey, big Dave and fit Dave, and not forgetting young Claire and Nobby, to name but a few of you all.

If this Bill supports in any form the desire to re-educate both the public and professionals about those with Down’s syndrome, and the advances—including in life expectancy—that have occurred in recent decades for Down’s syndrome, it has my support. Of course, this Bill does just that. It will not fix everything, but I welcome it because the principles are so important—enabling people to live as independent and prosperous a life as possible. To do this, it is important that we recognise their specific healthcare, educational and housing needs, and that local authorities play their part. That is not mission impossible, surely, and this Bill is a good start.

It is so important that we get the language right, and this Bill does so. It is a Bill that is set to improve the lives of people living with Down’s syndrome, who just need chances in life, like everyone else. I am delighted that it will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.

The Bill aims to ensure that certain health, education and local authorities take account of the specific needs of people with Down’s syndrome when exercising their relevant functions. That builds on the Government’s stated commitment to improve outcomes for people with a learning disability; support those with Down’s syndrome and their families, who have struggled to access services; and improve support in schools and social care support. The Bill aims to address those issues by providing guidance to authorities on how to meet the needs of persons with Down’s syndrome when carrying out their existing duties in certain specific areas.

It has been questioned whether the Bill’s aims will be achievable, particularly around destigmatisation. I do not agree with that, however; I believe that any step or measure will be a huge leap in the right direction. I understand, too, that there are some concerns about whether the guidance alone will produce the desired outcomes, and about the approach of breaking out Down’s syndrome from other learning disabilities or chromosomal disorders. The duties do not require, and are not intended to result in, enhanced treatment being given to those with Down’s syndrome over and above other groups, especially those with learning disabilities.

I hope at a future time to be having a similar debate about DiGeorge syndrome. While Down’s syndrome is caused by having an extra chromosome at birth, DiGeorge syndrome is caused by a problem with a person’s genes, called 22q11 deletion. It is hot on the heels of Down’s syndrome in terms of its prevalence in society, and I very much hope to bring it to the House’s attention. I hope that all who are participating in this debate will join me in a future debate to raise awareness of DiGeorge syndrome. For those who have the syndrome, or for family members who need support, I highly recommend Max Appeal.

I wonder whether the Minister can help me. The Government have announced investment in “generation genome”, a pioneering newborn screening programme to detect more than 200 rare diseases. That is part of a £95 million investment in the Office for Life Sciences, I think. Do we know whether 22q will be part of that? If it is, that would be a beyond huge step forward.

Finally, I dedicate my speech to Mark Chadwick, who was born with Down’s syndrome. And I say, so what? I have known Mark since 2015, and he has been a trusty steed since we first met—a charming, bright, engaging individual with a passion for dancing and politics. He recently applied to be a town councillor. I am very proud to call him my friend. He is a fine example of why the Bill is so important, and I am sure that he would agree with George Webster: why did we not think of this before? I 100% support this most excellent Bill.

Greg Smith (Conservative, Buckingham)

I rise to speak entirely in support of this Bill receiving its Second Reading today, and hopefully travelling at pace through its whole passage through both Houses and to Royal Assent before World Down Syndrome Day on 21 March next year.

As my right hon. Friend the Member for North Somerset (Dr Fox)—whom I warmly congratulate on bringing this Bill forward—has set out in his superb opening speech, the Bill is so important as it aims to improve services and life outcomes for people with Down’s syndrome, amounting to some 47,000 people across the country. The Bill will particularly make England —I share my right hon. Friend’s ambition in time for it to be our whole United Kingdom—a better place to grow up and live with Down’s syndrome, bringing fairness to a group of people who, I am sorry to say, are too often marginalised. It will promote the rights and welfare of people who have Down’s syndrome at all levels of society, and raise awareness and understanding of it.

Fundamentally and importantly, the Bill will force education, health and local authorities in England to take people with Down’s syndrome into account when providing services, and will establish a national strategy for equality. Of course, most children with Down’s syndrome will learn to read and write, and go to a local mainstream school like other children. They will also rightly take part in many other activities that are on offer to all. Life should be as broad and fun-packed as that of any other child. Yet clearly, many daily challenges remain for those impacted by Down’s syndrome. One constituent of mine, Kate, contacted me about her two-year-old daughter who has Down’s syndrome. My constituent wrote:

“She is a bright, funny, gorgeous, amazing little girl. But already in her short life I have struggled to get her the help she deserves and needs. Covid has obviously played its part, but the issues are more ingrained. I am looking to the future and can see the battles ahead, the fights I know I will have. This needs addressing. It shouldn’t be like this.”

Those are wise words from my constituent. I very much hope that the Bill will make life better for my constituent and so many other families.

The Bill will transform the lives of people living with Down’s syndrome, and it is especially welcome that the Government have committed their support to it and will equally consult widely on the proposed guidance, ensuring that the voices of those with Down’s syndrome, their families and carers are heard, and that the guidance is fit for purpose. That is essential.

Provisions in the Bill will enable adults with Down’s syndrome to live, work and join in with confidence and independence, fully included in society alongside their friends and peers. Critically, I am hopeful and confident that the passage of the Bill will go a long way to destigmatise—we heard that word before and it cannot be restated often enough in this debate—Down’s syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. As my right hon. Friend said in his opening remarks, for the first time people with Down’s syndrome are beginning to outlive their parents. If we do not make provisions for this, I fear that there will be tragic consequences in the future when it comes to care.

I entirely support the Bill and am delighted that the Government equally support it. I look forward to seeing it progress rapidly through Parliament.

Elliot Colburn (Conservative, Carshalton and Wallington)

I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on bringing forward this Bill, of which I am honoured to be a co-sponsor. I am equally delighted that the Government have given their backing to it, because it will make such a difference to the lives of thousands of people.

My right hon. Friend expertly set out why the Bill is needed in his opening remarks. I add my thanks to charities and organisations up and down the country, including the National Down Syndrome Policy Group, for their tireless campaigning. Indeed, it is because of campaigners, charities and families from my constituency that I came to co-sponsor the Bill and I would like to share their stories this morning. In particular, I thank Lucy Cooper and the fabulous team at Get on Down’s.

Get on Down’s is an amazing local group. I encourage hon. Members to come and visit or join me in Parliament Square this afternoon to meet some of their regular service users and families. It is a weekly support group for families who have young children with Down’s syndrome or a prenatal diagnosis of Down’s syndrome in the Sutton area, including Carshalton and Wallington. Its key aims in supporting families include assisting and supporting families who have a child with Down’s syndrome; providing a network of support; introducing them to other people in the same position; organising external speakers such as Portage, speech and language therapists, physiotherapists, the Down’s Syndrome Association and psds; and providing congratulations and pregnancy packs to local hospitals to ensure that new parents get up-to-date information about Down’s syndrome.

That last aim stands out starkly, because I have heard some frankly shocking stories from parents, such as that after being given a prenatal diagnosis of Down’s syndrome, many received no signposting, support or guidance. One parent even said to me that after being given the diagnosis, she was immediately handed a leaflet on termination with no other context provided.

I had the honour of going to a weekly Get on Down’s meeting to meet the service users, families, volunteers and, most importantly, the amazing children who go there every week. I especially want to thank the lovely Charlotte for taking the time to show me around, talk to me about her concerns and tell me more about her life. She told me about the things that spoke to her and that she was most passionate about. I had already agreed to co-sponsor the Bill by the time of the visit, but that really drove home to me how important the legislation will be.

I am a firm believer that nothing demonstrates the impact of what we regularly talk about in here more than going out and talking to those directly affected by it. Charlotte talked to me about the messages that the National Down Syndrome Policy Group was backing that spoke most to her. She told me that she felt that she deserved equality, opportunities, paid work and to be listened to. I could not agree more. I hope that the whole House will listen to her and the 47,000 people living with Down’s syndrome in the UK today.

As we have heard, people living with Down’s syndrome face significant challenges throughout their life. That was echoed in the conversations that I had with families at Get on Down’s and is particularly relevant when it comes to accessing public services including education, health, social care and housing. I will focus on the realm of education, health and care plans, because I have a stark example from my borough.

The families I met told me about their experience of trying to access services that actually reflect and meet their needs, which is sadly something that we have heard too often from families up and down the country—the London borough of Sutton is no exception. Almost every week, a parent comes to me who has a child with additional needs, whether that is Down’s syndrome or something else, and is struggling to access EHCPs in the first place or has managed to get a plan but it in no way reflects their child’s needs.

I give the caveat that Sutton has a particularly bad record and has had a lot of national media exposure, including as part of a BBC “Panorama” exposé. The reaction to the Bill from some in local government, which was supportive but laced with some scepticism, shows why the Bill is needed because it demonstrates that the provisions in existing legislation, such as the Children and Families Act 2014, were not being properly applied. Sadly, as parents have not had a Bill of this type, they have needed to go into battle with public services to access things that most of us would expect as standard.

The Bill is about so much more than access to education, health and care plans. Its provisions address the challenges that people with Down’s syndrome face throughout life by ensuring that there is guidance that relevant authorities must take account of when designing and delivering services. I emphasise again that while accessing services can be a struggle in the first place, even when services are provided, they can be far from appropriate for the needs of those they are supposed to be supporting.

Douglas Chapman (Scottish National Party, Dunfermline and West Fife)

The hon. Member raises several pertinent points. This is about not just dental appointments, vaccinations and everything else that goes with what the Bill is trying to achieve, but changing attitudes. When parents are handed that bundle at the maternity hospital, they should not just get a leaflet: schools and support systems need to have it in mind that this is another child who deserves their attention and their professionalism. He makes that point exceptionally well.

Elliot Colburn (Conservative, Carshalton and Wallington)

I am very grateful to the hon. Member for his intervention. I think I can highlight that point in even more detail.

One really shocking thing I have found through constituency surgeries is that, when parents come to me with copies of their children’s education, health and care plans, the children’s names are often incorrect on the plans, many of which are quite obviously copied and pasted. They are templates, and there is a standard form that is adjusted very slightly whenever a new plan is issued. That is not how to cater and deliver services for children living with Down’s syndrome, or, frankly, for any child who needs access to an education, health and care plan. The whole point of the legislation and such plans, as well as the point of the Bill, is to make sure that services properly cater for the individual and reflect their needs accurately.

I passionately support the Bill because it will give parents and people living with Down’s syndrome the legal backing of the state if they do need to go into battle. I support the Government in their approach to consulting those service users, and indeed those who will be delivering these services, when it comes to designing the guidance. I also put it on record that I agree with my right hon. Friend the Member for North Somerset that it is vital that the issue of redress is taken properly into account during the Bill’s passage so that we have that in place by the time it becomes legislation.

The testimonies of the families I have spoken to at Get on Downs, and that I am sure we have all heard from our constituents and families up and down the country who have been campaigning hard to secure the passage of such legislation, have been incredibly heartfelt. I have heard over and over again what a difference the Bill will make to their lives, or what it would have meant to them if they had had this kind of legislation in place when they were struggling. When I met Charlotte and the families at Get on Downs, they said they wanted to be listened to, and we have the opportunity to listen to them today, so I hope colleagues will join me in voting for the Bill, start the journey of putting it into law and help better the lives of the thousands of people living with Down’s syndrome in our country today.

Sally-Ann Hart (Conservative, Hastings and Rye)

I also welcome the introduction by my right hon. Friend the Member for North Somerset (Dr Fox) of this very important Bill, which, when passed, will lead to the establishment of a national strategy to improve provision and outcomes for all those living with Down’s syndrome in England. The Bill will legally recognise people with Down’s syndrome as a specific group, ensuring that they are protected along with other minority groups.

Current Government policy focuses on recognising and addressing the inequalities and premature mortality of people with learning disabilities. Policy does not differentiate between different parts of the population except where there is clinical justification, and we have seen during covid that people with Down’s syndrome are particularly at risk from that disease and classed as clinically extremely vulnerable. The aim of this Bill is to ensure that people with specific challenges caused by Down’s syndrome are given the right support by local authorities, which are to be given guidance on appropriate steps to take to meet specific needs, building on the Government’s stated commitment to improve outcomes for people with a learning disability.

It is important that children with Down’s syndrome attend mainstream schools, but too many are still sent to special schools, although that varies between local authorities. When I was in my early teens my mother spent a couple of terms as a supply teacher at a special school in Hexham, Northumberland. She absolutely loved it—loved her pupils, loved teaching them—and found it so rewarding and such an honour to teach children with a variety of intellectual and learning disabilities. We were lucky as her daughters that she had the initiative to get us in to visit from time to time, opening our eyes—our minds, hearts and souls—to those who may not be quite the same as us but are still very much loved and valued members of our society. It also taught us that people are different and this is what makes us all so special as human beings.

We all want equal opportunities for people to believe in us as individuals. This Bill will place a requirement on every school to meet the needs of pupils with Down’s syndrome, giving them a choice about which school to attend. As society becomes, perhaps a bit too slowly, more inclusive, life is changing for people with disabilities, including Down’s syndrome. Mainstream education is becoming more common, and this has brought considerable benefits to all children. There is no doubt, however, that it can be challenging at times to include a child with Down’s syndrome in the classroom, as it can be with any child with a learning disability, and teachers would need training to better understand the condition, including in helping pupils with Down’s syndrome to improve their speech and language and helping them to reach their optimal communication skills, as well as ensuring all children can access the curriculum.

Many parents in my constituency have complained to me that they have to fight sometimes for an education, health and care plan. It is shocking that some children with Down’s syndrome—a well-known learning disability with a well-known need for good early educational intervention—do not have a full-time EHCP and that some do not even have one at all. Not having a plan means the right provisional support system is not available for them or even that they have no support whatsoever.

Research shows that mainstream schooling produces better outcomes for children with Down’s syndrome and that students with Down’s syndrome gain academic, social and behavioural advantages from being educated with their typically developing peers in mainstream school. With appropriate support and accommodations, students with Down’s syndrome can benefit from mainstream schooling, and inclusive education has benefits for all students.

My daughter, who is now an adult, had the joy of going to primary school with a classmate who had Down’s syndrome. She enriched her classmates’ lives, and as they all got older and started to notice that she was different they did not treat her any differently: to them she was her, and absolutely perfect as she was— someone they had carefully grown up with. As they got older it also helped them to be more caring and considerate. Unfortunately, their friend was not allowed to stay with her friends beyond middle school; that was not only sad for her and her family, but was a loss for her friends and the school.

I also want to briefly highlight the lack of job opportunities for people with Down’s syndrome, as has been mentioned. There are around 40,000 people with Down’s syndrome living in the UK and only 6% are employed; we should think of the isolation and loneliness of the 94%. I want to take this opportunity to thank Little Gate Farm for all the work it does to help and support people with learning disabilities near me. This Bill aims to improve employment rates for adults with Down’s syndrome. We must unleash the potential of everyone, including people with Down’s syndrome, to give them the opportunity to show us all what they are truly capable of and to ensure they get the same chances as everyone else.

This is about levelling up—levelling up individuals. It is right and just to give people with Down’s syndrome recognition of their specific needs and give them the dignity of a human person. It is never too late to be who we want to be, and never the wrong time to do the right thing.

Proceedings interrupted (Standing Order No. 11(4)).

Tom Randall (Conservative, Gedling)

Like many others, I speak in support of the Bill. I add my congratulation to those from colleagues of all parties to my right hon. Friend the Member for North Somerset (Dr Fox) on having brought the Bill to the House and his passionate speech in favour of the measures it contains. Down’s syndrome is a visible condition and the name will be familiar to very many people, but my right hon. Friend’s speech raised so much awareness of a condition of which there are so many factors that members of the public or those who have not been directly affected are not aware. This morning’s debate, like those on so many sitting Fridays, has been an educational process. We have learned something about the wider world, which is a good thing for us as politicians to do once in a while.

There are 47,000 people in the UK with Down’s syndrome. I am grateful to my constituents who wrote to me in advance of this debate to tell me about the issues that they and their families have faced and the challenges that the condition can bring. They have told me about how the language and attitude on learning that the baby has Down’s syndrome can often be negative and discriminatory, and that young people with Down’s syndrome are more likely to be hospitalised than those without it, and for longer.

From my research in preparation for this debate, I have learned that those with Down’s can have problems with their heart, bowel difficulties, difficulties with hearing and vision and increased risk of infection, so there is possibly an increased requirement for health services. Parents are often discouraged from sending children to mainstream schools because teachers there sometimes lack confidence and the knowledge to include children in classes alongside siblings and neighbours. Post-16 education is often a “one size fits all” approach that sees learning stall. Social care can often be inappropriate. My right hon. Friend gave the example of those in older life, and he was right to say that there is a scandal that we very much need to avoid in terms of possibly putting those with Down’s syndrome in age-inappropriate settings.

The Bill provides the opportunity to make life-changing differences for a condition that affects so many aspects of life across the health, education, housing and social care fields. The Bill is short—only a couple of clauses—and it requires the Secretary of State to create guidance. Various authorities would be required to pay due regard to that guidance. One might argue about whether primary legislation is required for the production of guidance. We ought not to have laws for laws’ sake, but given the wide variety of bodies that the guidance will affect, the argument in favour is strong and has been articulated strongly this morning. The importance of the changes that can be brought about once the guidance is written and implemented has also been highlighted.

There is a precedent for the Bill. We have not spoken yet of the Autism Act 2009, which shares some similarities with this Bill. I was particularly struck by the words of the National Autistic Society:

“The…Act has brought about some great changes to the way that autistic people access support. Because of the Act, almost every council has a diagnosis pathway for adults and a specific Autism Lead. Additionally, it makes sure that every autistic person has the right to a social care assessment, something which was difficult for many autistic people more than10 years ago.”

It appears that that legislation has brought about some positive changes, so I am hopeful that, by supporting this Bill today, we will be able to revisit this situation in 10 years’ time and find that we have seen great strides in the way that the needs of people with Down’s syndrome have been met. The Bill certainly commands my support, as I am sure it does across the House, and I wish it well.

Nicholas Fletcher (Conservative, Don Valley)

It is a pleasure to follow my hon. Friend the Member for Gedling (Tom Randall) and to be in the Chamber for my first sitting Friday. It is a completely different experience—it is lovely to see the House being so collegiate—and it is fantastic to be supporting the Bill from my right hon. Friend the Member for North Somerset (Dr Fox). Few private Members’ Bills receive so much support and the fact that this Bill has done so is testament to how welcome it is. I have met some of the fantastic families who have campaigned on this issue and I know that the Bill is the culmination of years of work.

Over the past few decades, we have seen significant progress in how we support those with disabilities to live fulfilling lives—notably, through the Equality Act 2010. However, the term “disabled people” refers to such a large and varied group that legislation for those with disabilities needs to be more targeted if it is going to address people’s individual needs. The Autism Act 2009 was a decade ago and it is time that we did the same for those with Down’s syndrome. This Bill will help people with Down’s syndrome and their families to receive public services that are suited to their needs in every interaction that they have with local and national government, from jobcentres to social care.

One area where that is particularly relevant is in education. The Down Syndrome Bill will allow parents to choose the best school for their children—whether it is a mainstream school or a special needs school—because, wherever their child attends, the local authority will have to ensure that the education provided is adapted to their needs. As research suggests that children with Down’s syndrome have significantly better educational outcomes in mainstream schools, the Bill could have a transformative impact for some children.

Social care for people with Down’s syndrome is another area that will see a change because of this Bill. Although social care has often been in the news during the pandemic, the coverage has tended to focus on social care for older people. Nevertheless, a significant percentage of people who require social care are of working age and, especially in the case of people with Down’s syndrome, their needs are different from those of older people in care.

People with Down’s syndrome are living longer than ever, which is a wonderful thing, but it does not mean that a care home for a 75-year-old man with dementia is suitable for a 45-year-old woman with Down’s syndrome. I am therefore pleased that, under the Bill, people with Down’s syndrome will be entitled to age-appropriate social care.

The Bill will not solve all the challenges faced by people with Down’s syndrome when interacting with Government bodies, but it will hopefully be a step forward that leads to a marked improvement on the present situation. Once again, I commend my right hon. Friend the Member for North Somerset for introducing the Bill.

Alex Norris (Labour/Co-operative, Nottingham North)

I am grateful for the opportunity to speak for the Opposition on this very important Bill. I commend the right hon. Member for North Somerset (Dr Fox) for using his precious private Member’s Bill slot on this important matter, and I understand this is his first success in the ballot in 29 years, so roll on 2050 for the next one.

The right hon. Gentleman said plenty that will have moved people who are watching as well as Members in the Chamber, particularly the comment that I will reflect on now and over the weekend, too. This Bill is not about a condition: it is about people, and it is not about charity; it is about empowerment. That really struck me, and it is important.

We have heard that 47,000 people in this country, across every nation, region and constituency, are living with Down’s syndrome. They are people with hopes and dreams, who love and are loved, and they have a right to live full lives and to reach their potential. The right hon. Gentleman is taking a major step in that direction with this Bill.

We have had brilliant contributions from colleagues on both sides of the House, and I will try to group them into themes. As this Bill is human rights legislation, as the hon. Members for North Antrim (Ian Paisley) and for Stourbridge (Suzanne Webb) and my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier) said, I share the enthusiasm of the hon. Members for Dunfermline and West Fife (Douglas Chapman) and for Berwickshire, Roxburgh and Selkirk (John Lamont) that there should be a four-nations approach in the years to come.

There were moving contributions from the hon. Members for Broxbourne (Sir Charles Walker), for Meon Valley (Mrs Drummond), for Buckingham (Greg Smith), for Carshalton and Wallington (Elliot Colburn) and for Don Valley (Nick Fletcher), who brought the debate to life by raising constituency cases. We can throw around the statistics about tens of thousands of people, but each one of them is an individual with different needs, different hopes and different dreams, and they should be treated in that way.

Alongside the 47,000 people, there are tens of thousands of families—mums, dads, sisters, brothers and cousins—who I know will have listened to the debate. My family is one of those tens of thousands, so I am especially grateful to the right hon. Member for North Somerset for giving us the opportunity to take a leap forward in the support available for people living with Down’s syndrome.

I was born in 1984, when life expectancy for a person with Down’s syndrome was about 25; it is now into the 60s. People with Down’s syndrome have basically gained a year every year for my entire life, which is wonderful and it shows the advances we can make when we prioritise the human rather than the condition, and when we are ambitious for everybody and do not define people by the challenges they live with. We know that, with appropriate support, people with Down’s syndrome can thrive at school, can work, can marry and can live full lives. We have to take every opportunity to remove all the barriers, to tackle stigma and to tackle the poverty of ambition that hold back progress in this area, and this Bill is a perfect opportunity to do so.

I note that the right hon. Gentleman has secured Government support for the Bill, so its passage is likely to be smooth. Clause 1(1) provides for the Secretary of State to publish guidance to relevant authorities to make sure they meet the needs of people with Down’s syndrome, which is a powerful tool and I look forward to hearing from the Minister about what she envisages being part of that.

Under clause 1(3) there is an expectation that the Secretary of State will consult. As other colleagues have said, that is important. It must start with individuals with lived experience, so they can tell us what change they need in their lives and what challenges they have had to negotiate. It must also apply to their families—the hon. Member for Carshalton and Wallington talked about it being a battle, which is a common theme in the stories of the families who I have spoken to and who we have heard about today. Beyond that, it is crucial that Ministers talk to clinicians, commissioners and decision makers. I am sure that the Minister will not want to be prescriptive about a consultation today, but she might set out some of its broader themes.

The schedule to the Bill highlights four areas in which the right hon. Member for North Somerset is seeking guidance to be made. I will touch on them briefly in turn. On the national health service, it is vital that healthcare services are responsive to and ambitious for people living with Down’s syndrome so that they get world-class healthcare. We can be proud of the progress made over the last few decades, but we must make sure that we are as ambitious about mental health as we are about physical health and that the progress in physical health can be matched in mental health. I hope that the Minister reflects on that in her closing remarks.

The Bill also references clinical commissioning groups. The Health and Care Bill is going through this place—we debated its remaining stages on Monday and Tuesday—so the commissioning landscape will change. Can the Minister tell us how the language will change to reflect the fact that the Bills are progressing at the same time?

Kerry McCarthy (Labour, Bristol East)

To return to what my hon. Friend said about mental health concerns, when people with disabilities and conditions such as Down’s experience mental health problems that are not necessarily connected to their condition, treatment can be more difficult and it can be difficult to identify that they are developing mental health problems. Perhaps it is more a point for the Minister, but I hope that we can bear that in mind when we are looking at how we treat people with Down’s.

Alex Norris (Labour/Co-operative, Nottingham North)

I am grateful for that intervention. Members on both sides of the House share a commitment and an ambition to make significant advances in the mental health of the British people. We know that there are barriers for people with the most profound physical health conditions because, traditionally, we have not looked beyond those conditions to evaluate the mental health aspect. I hope that the Bill is a good opportunity to do that.

On housing, we know that with the right support, people with Down’s syndrome can live semi-independently, so we must make sure that the right type of housing, sensitive to need, is available and distributed across the country. Has the Minister made a baseline assessment of where we are and what we might need to do better?

Hon. Members have made important points about education. At the risk of repeating more of what the hon. Member for Carshalton and Wallington said, the points about education, health and care plans were well made and I hope that they were heard. I took from his contribution that they cannot be pro forma exercises; they must be individual exercises that meet individual needs. That is the purpose of having them.

Linked to that, on employment, only 6% of people with a learning disability in this country are in employment. We should aspire to do much better. Work gives purpose, independence and dignity, and is part of the collective investment that we make in each other. Our ambition is for everybody to be in work who can be, irrespective of their challenges. We need a full strategic plan on the active steps that we can take to show employers the benefits of hiring staff with learning disabilities and the support that can be offered to help to facilitate that. It is important to understand that it is a win-win because, as global studies show, workplaces hiring employees who live with Down’s syndrome are happy and productive.

The right hon. Member for North Somerset made the point about redress, which is an important and live conversation in this country. To read across, if I may, to the Cumberlege report and the impact of sodium valproate and Primodos on children who are born having been exposed to them, those families still cannot get redress—in many cases, many decades later—without an expensive, long and hard pursuit in the courts. That system is not working. The report recommended that a redress system be set up to avoid that, which has not happened as the Government have not accepted the recommendation. It should not be happening to them and it should not happen here, so I hope that, through the Bill, we can do better for people living with Down’s syndrome and for others.

Liam Fox (Conservative, North Somerset)

There is, of course, a great carrot for the Government in producing a workable redress system, which is that, if it is not fixed in this Chamber, it may be fixed in the other place. One way or another, however, I assure the hon. Gentleman that it will be fixed.

Alex Norris (Labour/Co-operative, Nottingham North)

I am very grateful to the right hon. Gentleman for that, although I am not sure that it was a carrot as much as a stick. However, I know that noble Lords will be taking the same interest in the Health and Care Bill, and I absolutely share his confidence in that sense.

To finish, I look forward to seeing this Bill in its next stages, and we want gains to be made in the four areas in the schedule to the Bill. I would make the very important concluding point that, particularly in relation to local authorities, social care is distressed and under-invested in in this country, so if there are new responsibilities, there must be new investment to come with that. We will continue to make such points at future stages. This requires Government commitment, and it is good that we are hearing that today, but also the resources to sit behind it, and I hope we hear that, too.

Gillian Keegan (Conservative, Chichester)

I, too, congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on securing the Second Reading of his private Member’s Bill, the Down Syndrome Bill.

My right hon. Friend’s passion to help address the challenges faced by people with Down’s syndrome has been unwavering, and I want to thank him and all those who support the Bill—and many colleagues are here today—for bringing forward a Bill to address these challenges. I thank all hon. Members for their contributions, and I have really enjoyed the debate. I, too, have learned a lot, and it is such an important time for such an important debate. I also want to pay tribute to Sir David Amess, who cared deeply about supporting people with learning disabilities. He was arranging for us to have a cup of tea to discuss how we could work together to do this. Sadly, this cannot happen now, but I want today to mark Sir David’s passion for improving the lives of all those people with learning disabilities.

People with Down’s syndrome should have the opportunity to enjoy all aspects of our society, and to have access to the services and support that will enable them throughout their lifetime, and I wholeheartedly support the Down Syndrome Bill. Sometimes we are lucky enough to be in the right place at the right time, and this is one of those occasions for me, because my nephew, Joseph Gibson, is one of the estimated 47,000 people in the UK who have Down’s syndrome. Joseph is a funny and bright teenager. He loves his school, has a great group of friends and is a huge football fan, supporting Liverpool, of course, and also his local team, the O’s—Leyton Orient. Most importantly, Joseph is happy and thriving. He is learning and developing, and he demonstrates his ability, not his disability every day, as all young people and adults with Down’s syndrome do.

However, my brother and sister-in-law, Marcus and Sara, have had to work incredibly hard to access the services that have made it possible for Joseph to develop his confidence and independence. We have heard from many other families—and I pay tribute to those who are up in the Gallery today—about how difficult they have found it and how much they have been fighting that battle. I want everybody to know that through this Bill, with our support for it and everybody’s support for it in this Chamber, I hope those battles will become a lot easier. I know that today people with Down’s syndrome are struggling to access the services they need, and I have seen this with my own family. It is not right, it must change and we will change it.

I recognise that the legal duties and frameworks are already in place to ensure services are tailored to people’s needs, but we know this does not always happen for people with Down’s syndrome and their families. There is a pressing need to raise awareness of the unique needs of people with Down’s syndrome and how they can be met, so that public authorities know how to meet their existing duties and people with Down’s syndrome can thrive in their community. That is exactly what this Bill seeks to address.

For the first time, the Government will be required to publish guidance on the specific needs of people with Down’s syndrome and how to meet them. The relevant public authorities providing health, care, education and housing services must have due regard to it in carrying out their functions. This is a significant obligation on authorities, and there can only be strong reasons for not following this guidance. Importantly, people with Down’s syndrome and their families will be at the heart of this. They will be involved in the development of the guidance, as well as with those responsible for planning and designing these services.

I believe the impact of the Bill will be wide-reaching. It creates the foundation to ensure that people with Down’s syndrome stay well, receive the right education for them, and secure the appropriate living arrangements to support their transition into employment and into their old age, and to help them be a part of our society in the way that they want to be.

Why do we have before us a Bill that focuses specifically on people with Down’s syndrome, and why now? Down’s syndrome is a genetic condition. Every person with Down’s syndrome is a unique individual but they often face common health risks: almost half of children born with Down’s syndrome have a heart condition; they face significantly higher risk of becoming unwell through infection, which can be life-threatening; and they may, and often do, also need additional support with their speech, hearing or vision. Evidence tells us that people with Down’s syndrome have specific patterns of development unique to this condition. Sadly, there is an increased risk of early onset dementia. The NHS recommends regular check-ups to look for signs of that from the age of 30. I also wish to acknowledge that mental health and physical health are two very different things, and we will very much look to focus on the mental health of people with Down’s syndrome, through our mental health strategy, which we will be working on throughout the coming months.

Thankfully, people with Down’s syndrome are living longer. This is not 1983 or 1984, when the hon. Member for Nottingham North (Alex Norris) was born and when people with Down’s syndrome lived, on average, to 25 years old. In 2021, people with Down’s syndrome are living, on average, to 60—I am pleased to see that this is continuing to increase, as is the pace of increase. It is clear that this Bill is not about giving people with Down’s syndrome more rights or enhanced treatment relative to others; it is about ensuring that there is a level playing field, so that they can access the services that they are entitled to in the same way as everyone else and that their needs are understood, so that services will be developed to meet those needs.

On redress, I fully recognise that, despite the legislation, there may still be occasions when people with Down’s syndrome and their families do not feel that their needs are being met, and there must be clear, accessible and fair processes for people with Down’s syndrome and their families to raise concerns. We want people with Down’s syndrome and their families to be able to resolve concerns with authorities directly. These processes should be easily navigated and not at great cost to families. We are considering how the routes to redress are working for people with Down’s syndrome and whether they are delivering the outcomes they need, but it is essential that we get this right and I anticipate returning to this subject as the Bill moves through the House.

This is a hugely important Bill, for all the reasons I have spoken about today. I recognise that providing the right support for people with Down’s syndrome is a matter that resonates across the whole of the UK, and we have heard some contributions from those from other parts of the UK today.

Douglas Chapman (Scottish National Party, Dunfermline and West Fife)

Is the Minister in a position to open discussions with the Scottish Government, Welsh Government and the Administration in Northern Ireland to make sure that this is put on the agenda, either during formal meetings or informal discussions, so that the information she has can be shared across the rest of the UK and the benefits of the Bill shared also with those with Down’s syndrome and their families?

Gillian Keegan (Conservative, Chichester)

Yes, some of those conversations have happened but I will very much continue them. The scope of this Bill covers only England, but of course health, care, education and housing are also devolved matters. I know that there is a commitment to improve the outcome for people with Down’s syndrome in Scotland, Wales and Northern Ireland, including through legislation, and I look forward to working with other Health Ministers on this matter. I know that they are committed to doing that as well. I look forward to aligning policy, practice and the guidance wherever possible, so that best practice for social inclusion for all people with Down’s syndrome can be realised across the whole of the UK.

Charles Walker (Conservative, Broxbourne)

I heard a lovely story a few years ago of a young man who was living at home but was travelling to a day care centre independently on a bus. He did that for many months and then his parents got a telephone call saying, “We haven’t seen your son for a month. Where is he?” They said, “Well, he is leaving in the morning and he is coming home in the evening.” So the next morning they followed him discreetly. Halfway along the bus route, he got off the bus and walked into a builder’s merchant, where he had got himself a job. That was surprising, but perhaps we should not be surprised—we should liberate these young people to make great decisions.

Gillian Keegan (Conservative, Chichester)

I completely agree. As several hon. Members have mentioned, employment is important—to all of our lives, actually: it gives us purpose, structure, friendships and relationships. The shocking statistic that only 6% of people with Down’s syndrome are in employment was mentioned and we all must work hard to overcome that problem. That is the case for other learning disabilities, too: the figure for young people with autism is, I think, 22%, which again is not good enough. I hope to address that in my role as Minister for Care and Mental Health, whose brief includes learning disabilities.

To conclude, we are working towards an inclusive society for people with Down’s syndrome. The Bill takes one more step towards making sure that authorities are supported in delivering services that meet the unique needs of people with Down’s syndrome, and making sure this can happen consistently across the country. Once again, I congratulate my right hon. Friend the Member for North Somerset on this important work. I was happy and glad to be the Minister in place when he came forward with his private Member’s Bill and am delighted to be able to offer the Government’s full support.

Liam Fox (Conservative, North Somerset)

I want to say a few words in conclusion. I thank colleagues not only for their support for the Bill but for the warmth of that support, including from my hon. Friend the Minister whose help throughout has been invaluable. It is clear that we have a united voice and a united purpose; now we need to have a united intent to make the aims of the Bill a reality as the process continues forward. This Bill will not be a panacea for a particular problem—no legislation ever is—but it is a key tool. It is a vital first step forward.

However, we still face challenges, as I have mentioned. On the issue of redress, there is no point in having rights unless we can demand they are fulfilled in law. This is also not just a Bill about individuals with Down’s syndrome or families with a member with Down’s syndrome; it is about what we are as a society. We talk a great deal these days about global Britain, but global Britain cannot just be about diplomacy or trade or military prowess; it also has to be about our values.

If we are able to complete the passage of this legislation before we reach World Down Syndrome Day on 21 March next year, we will be the first country to legislate on this problem, making the United Kingdom a beacon for others in the world to follow. That is what global leadership is all about.

We hold power in this place, but we also hold power to empower. People with Down’s syndrome are not supplicants in our society but full citizens who have the same right to demand for themselves quality services in health, education and social care. We have heard today that on their own and through us their voices are increasingly being heard and I urge them to increasingly use their voices. I hope they have understood from both sides of the House and from all parties today that we will be right behind them when they use their voices and exercise the powers that the Bill may bring them.

Question put and agreed to.

Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).