Down Syndrome Bill

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

May I begin by thanking Members on both sides of the House for the support that they have given the Bill from the very outset? There are not many things that justify the downsides of being a Member of Parliament, but this is certainly one of the upsides—when we can see what will inevitably be a crisis emerging and do something about it in due time. That is one of the privileges given to us, and I am grateful to Members for their support in taking the Bill forward. They have not only supported it here in the House but advocated for it outside the House, where it has become one of the best-known private Members’ Bills in recent times in terms of public awareness of what is happening. That matters a great deal, because the Bill is not exactly the same as it was when we considered it on Second Reading—a subject that I will come to in a moment.

The most common question that I am asked is, “Why have you been so concerned with this issue?” I explained on Second Reading that when I was growing up, the boy next door to me had Down syndrome. As a GP, I saw a number of those with Down syndrome and their families, and I saw the difficulties that they encountered. We regularly see one of my friends in my constituency, where I live, whose son Freddie has Down syndrome. As Members of Parliament, we have all recognised that having someone in the family with Down syndrome is not just a single problem to be dealt with; it is a conglomeration of problems. Families find themselves fighting on a number of fronts to get the quality of care that, frankly, they already have a right to. For me, that was why we needed a separate Bill.

All Members will have had letters asking why the Bill could not have been wider—why we could not have included more conditions in it. I suppose there are two answers to that. The first is that private Members’ Bills have to be short and concise if we are going to get them through. Let me be very frank: getting a foot on the ladder of legislation in areas such as this is crucial. If we reach for too much in a private Member’s Bill, we can end up with zero. I think we have set the appropriate level of ambition in this Bill.

We also have to recognise the complications that come with an extended Bill when it comes to the view of the Treasury. Many years ago, I was in the place of the Lord Commissioner of Her Majesty’s Treasury, my hon. Friend the Member for Castle Point (Rebecca Harris). It is definitely a case of gamekeeper turned poacher, but you learn a great deal as the gamekeeper for when you have to be the poacher later on when it comes to private Members’ Bills. I put on the record my thanks to her for her help. The role of the Friday Whip is not well understood outside Parliament, but when they are on your side, they can be very powerful allies indeed, and her support is very much appreciated.

We also wanted the Bill to be separate because it is about a definable group in the population. Down syndrome is not something where there is any dubiety about the diagnosis and, as I said, there are complex identifiable needs. For example, we know that those with Down syndrome have a higher level of issues such as congenital heart disease, they have a higher instance of leukaemia, they have myriad ear, nose and throat problems, and the earlier they are dealt with, the better. It is difficult enough for parents to be fighting waiting lists and fighting to be regarded with sufficient urgency; if they are also dealing with the education system and trying to get help for a learning disability, that is an additional problem.

The successes in medical care are the main driver for the Bill. When I was growing up, that boy next door had a life expectancy of 15 years. When I became a doctor in 1983, the life expectancy was about 30. Now, it is about 60. We should all be extremely grateful for that, but, as ever with advances in medical science, it brings its own problems. The problem, if we want to see it as such, is that parents will have this extra worry: “What will happen when I’m not there?” That is why I referred at the very beginning to a perfectly identifiable crisis that is on its way to us. If we actually take measures now, we can prevent individual tragedies. If there is a real justification for Members of Parliament having their own constituencies and dealing with real people, rather than being creatures only of a political party, it is that constituency link, which tells us about problems that need to be addressed and gives us the early warning sign to pass legislation to be able to deal with them. The complexity of the issues is one reason why we need separate legislation and why we had to bring different provisions into the Bill as it comes back for Third Reading from when it left the House after Second Reading.

The right hon. Member is making such a powerful point. He and many other Members have had numerous letters questioning the narrowness of the Bill. Will he reassure us that this is only the beginning and most definitely not the end of the process?

Indeed. I would not even say it is the end of the beginning. It is on the way to being the end of the beginning, but this will be a perpetual battle. So long as medical science is able to make advances in genetics and immunology, this process will continue into the future and we will need to look at it. It is worth pointing out, to answer the hon. Lady’s question more directly, that we considered this in Committee. The Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), made it clear that in the guidance that will be issued, which I will come to in a moment, it is entirely possible to deal with the effects of other conditions that may have the same effects as those emanating from Down syndrome. In a way, yes, we are starting the process, and the way in which we change the Bill is absolutely key to that.

On Second Reading, I think it is fair to say, because we can be a little self-critical, that this was a well-meaning Bill that went as far as we could. However, I made it clear that one big issue was missing—the enforcement of rights. It is all very well to make available new provisions and rights in law, but if an individual or parent does not have the ability to enforce those rights, if there are no mechanisms or levels to pull to enable them to get the full benefit of what the legislation supposedly gives them, ultimately we are failing to achieve what we want. We discussed two major issues. I purposely left them out of the Bill on Second Reading because we were not ready. There is nothing worse than poorly-thought-out legislation that we have to come back and amend. It is far better to think the process through, get agreement on both sides of the House and with the Government, and then proceed on the basis of unanimity, as happened in Committee.

The changes were essentially twofold. The first was getting agreement from Ministers that they would issue guidance to local health and education bodies and planning authorities to ensure that healthcare, education and long-term care issues would be properly taken into account. That was a major step forward. Again, it answers the question of how we can broaden the effects of the Bill, even with measures that are not in the Bill. That means looking at other conditions that will face the same problems as created by Down’s syndrome. However, that agreement created its own parliamentary problem for us, because as those who listen to debates in the other place will know, guidance issued by Ministers that is not laid before Parliament creates a potential democratic deficit. That is why I think it was the first major step forward for the Bill in Committee when the Government agreed not simply that the Minister would issue guidance, or that that guidance could apply directly to the various bodies concerned—another important step in itself—but that that guidance would be laid before Parliament.

I pay huge tribute to my right hon. Friend for bringing forward the Bill and the manner in which he has done so. On the territorial extent of the guidance, as a Welsh Member of Parliament I pay tribute to him, but he will know far better than I, given his length of service in this place, that the Bill’s territorial extent is England only. The Minister has alluded to working with devolved counterparts, but may I ask him to use his passion and experience to urge the devolved Administrations to follow suit?

I thank my hon. Friend for that question. It will not surprise him to hear that, as a committed Unionist, I will come back to that. We need to consider the quality of life of all citizens in the United Kingdom, not just those for whom we are directly legislating today.

I turn to the second element of precedent-setting changes that we made to the Bill in Committee. As we move to the new integrated care structure in the health service, we will have a named individual on the integrated care boards responsible for the application of this legislation, should it receive Royal Assent. That really matters, because those who have Down syndrome, their parents, their families and communities will know who in the new structure is responsible for ensuring that the guidance issued by Ministers is given effect on the ground. I think that even the direct application of ministerial guidance—as it would have had—and parliamentary scrutiny would not have been not quite enough to guarantee the effect of the Bill’s provisions where it really matters.

That is precedent-setting. I doubt very much whether this will be the only occasion on which my hon. Friend the Minister has to consider representations for named individuals to take responsibility, but I take great pride in the Bill being the first, because I think it is a major step change from what we have had. It will give the new integrated care plans the idea of responsibility for their application to named individuals, which gives us a point of pressure in the system that did not otherwise exist.

Finally, I turn to the Bill’s application to one part of the United Kingdom. At the beginning of the legislative process, we had a choice. We could have set out a United Kingdom Bill and challenged the Governments in Scotland, Wales and Northern Ireland for legislative consent orders. We could have said, “We dare you not to have the same provisions.” However, that would have become a debate about devolution, not Down syndrome, and I passionately wanted the Bill to focus on the needs of those with the condition and not become an argument about Government process or our constitutional relationships.

It is a real pleasure to follow my right hon. Friend the Member for North Somerset (Dr Fox), who, in a more modest way than I normally remember, has established an important part of what has made this Bill possible: his energy, enthusiasm and drive to get it to this stage in this shape and at such speed.

Many of us in this House will have different personal and professional reasons for supporting this Bill. For me, I must go all the way back to the early 1980s: believe it or not, I was alive and about seven or eight years of age. My parents had started fostering a few years before, and ended up doing so for about 30 years. During that period from the early ’80s to the mid-’80s, we as a family looked after Down syndrome babies, who came to live with us for weeks and sometimes months. We also offered respite care once a month for a long weekend for a Down syndrome boy in his early teens, to give his parents a much-needed break from an incessant and stressful time. Despite the love they had for their son, they needed a pressure valve in order to maintain their ability to look after him and keep their energy levels up.

We were as happy as could be to provide that respite care. I recall it vividly, because it captured some of the most enjoyable images of our time in fostering. I recall many occasions with that young teenager, who had a couple of obsessions that infiltrated our household. The first was with the recording artist Shakin’ Stevens, who I am sure is also a favourite of all those present. That young boy was a fanatic follower of Shakin’ Stevens, and whenever he came to join us for a weekend, the first thing he would do was to put on our Shakin’ Stevens tape, and we would all dance together in the kitchen with real abandon. I remember it as an extremely happy time.

That teenager was also fixated on the wrestling on “World of Sport” with Dickie Davies on a Saturday morning. He used to sit very close to the screen, because he did not have great eyesight, but he was transfixed by the bouts that were shown. Often, an hour or so would go by and he would not have moved.

I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on introducing this Bill.

It is always a pleasure to speak on a Friday, when, the hon. Member for Newport West (Ruth Jones) is right, we have an opportunity to get things done. We come together as one. As her fallen colleague, Jo Cox, said in her maiden speech, we have

“far more in common than that which divides us.”—[Official Report, 3 June 2015; Vol. 596, c. 675.]

Today, many colleagues have referenced our fallen colleague, Sir David Amess, which is so timely the morning after the election of his successor for the city of Southend; we all look forward to welcoming her to the House next week. We hoped it would usher in an era of kinder politics and I just hope that will be mentioned to the people who wrote the emails in my inbox today.

It is a great delight to have the opportunity to hear my right hon. Friend the Member for North Somerset speak with such compassion on such an important issue, and to have the opportunity to speak today. I share a friend with him in Annabel Tall, the mother of George, Freddie and Samuel. Freddie has Down syndrome. I believe Samuel is waving at us from the Public Gallery and is here to see the Bill go through, and I think Annabel is watching on television.

This is a big moment. As my right hon. Friend said,

“this Bill is not about a condition, but about people—people who have a particular condition, their families, and the people who care for them.”––[Official Report, Down Syndrome Public Bill Committee, 26 January 2022; c. 10.]

Annabel wrote to me earlier this week to explain why the Bill is so important to her family. She finds it

“disheartening to see new parents and carers having to fight exactly the same battles we were 20 years ago.”

I begin, as others have, by congratulating my right hon. Friend the Member for North Somerset (Dr Fox) on this truly groundbreaking Bill. I will add a few reflections of my own, the first of which dovetails with his remarks on Second Reading.

Our understanding of and respect for people with Down syndrome and equivalent conditions have evolved so much in my lifetime. Forty years ago, people with Down syndrome or something similar were viewed as problems to be managed, rather than people with potential to be realised. Employment, if it existed at all, was seen as an act of charity, rather than an opportunity for a person to be productive or to be in a role in which they could develop and thrive. The idea of someone with Down syndrome having a personal intimate relationship was taboo. It is amazing to think how far we have come. We have a far greater understanding not only of developmental conditions but of how they can exist on a spectrum. There are far more opportunities for education, employment and training. So many excellent employers in Newbury employ somebody who has a learning disability, but I want to give a particular mention to a young lady with Down syndrome called Karen who is doing a fantastic job and loving life at Nando’s in Newbury. The Bill recognises the specific challenges, particularly with health and care, but squarely places them alongside recognition of the dignity of people with Down syndrome and the idea that their families should not be scrubbing around for care and that that should be dependent on the provision of their local authority.

While I was preparing my speech, I thought about how far we have come in Parliament in what we say about disability. The Disability Discrimination Act 1995 and the Equality Act 2010, particularly the latter, contained important provisions about disability, such as the duty to make reasonable adjustments, which was mentioned by my hon. Friend the Member for Eddisbury (Edward Timpson). It is notable that the focus in the interpretation of both Acts was on physical disability, long-term health conditions such as cancer, or mental conditions such as schizophrenia or depression.

I commend my right hon. Friend the Member for North Somerset (Dr Fox) on the Bill and on his long-standing championing of people with Down syndrome. I know it stems from his time as a GP, his personal life and his time in this place.

The Bill is making an important simple but necessary change to improve the lives of people with Down syndrome. The issue matters to many people in Rushcliffe. I have heard from many constituents and organisations such as the National Down Syndrome Policy Group in praise of my right hon. Friend’s action and willing me on to support it. I am proud that the Government are supporting the Bill and to speak on the issue today.

I understand that people living with Down syndrome, their carers and families can find themselves disadvantaged by the inequality of access and the provision of basic services. My hon. Friend the Member for North Devon (Selaine Saxby) has set out some really personal examples of how that is affecting her constituents today.

Starting at a young age, people with Down syndrome face greater challenges in school and in life than their peers. I know that many parents of children with Down syndrome worry about sending them into mainstream education, where support may vary wildly. Other parents are left facing the cost of specialist support where help is not available locally. As a Conservative, I want everyone to have opportunity and choice. For some, specialist education might be the right path; for others it might be support in a mainstream school. The point is that people need to have choice. They need to be able to choose their own destiny and, at the moment, there are too many people with Down syndrome who are not able to do that. I am so pleased that the Bill will start to address that inequality.

Shockingly, although people with Down syndrome are likely to be hospitalised more often and for longer periods of time than people without the condition, there is little guidance for NHS commissioning boards or trusts on how best to care for their specific needs. Adults with Down syndrome are likely to require social care and council support much earlier in life than the national average, yet local authorities do not have a standard playbook or guidance on meeting those needs. Because of that, young adults with Down syndrome often end up living in facilities with people several decades older than they are, with no specialist care available.

Local authorities already have a duty to provide support and carry out assessments of need to help them to meet that obligation, and the Bill will provide much-needed guidance on best practices to local authorities who are delivering healthcare, social care, housing and education-related services, helping them to understand and deliver on their duties. That work will make public amenities more accessible and inclusive for the Down syndrome community, and help them to lead active, healthy and more independent lives. It will also raise awareness among the wider public, giving them insight into the facts of living with Down syndrome.

Like others, I start by congratulating my right hon. Friend the Member for North Somerset (Dr Fox) on his important work in bringing the Bill to the House and on reaching Third Reading. Like my hon. Friends the Members for Eddisbury (Edward Timpson) and for North Devon (Selaine Saxby), we all know individuals with Down syndrome. My experience is similar to that of my hon. Friend the Member for Eddisbury: when I was growing up, living in the house next door was a young lad by the name of Mark, who was the great love of his parents, Tony and Carol. It just so happened that he had this condition, Down syndrome, but that was not a barrier to the fulfilment of his life chances. Unfortunately both Tony and Carol have since passed away, but I am aware that Mark is leading a very full life. He is in work, and I believe he has his own individual accommodation, although he may require support and has a large network around him.

Our role, as legislators, is to ensure that people are able to achieve their full potential, and also to strive to give them the confidence to be ambitious. We who have been brought up in this country are very fortunate, in that the barriers to success are very limited. As a second-generation immigrant, I still pinch myself to make sure that I really am sitting on the green Benches in the House of Commons.

My previous experience as chairman of the board of governors of a further education college, and also as a governor on the board of a school for young people with autism, has shown me directly that when we do things right, we do them really right. That means being able to say to people, whatever their status or condition, “Be good, be great, and be a real world leader.”

My hon. Friend is advancing an excellent argument. Can he outline some of his experience of best practice on the board of governors, and of what works and is successful?