Down Syndrome Bill

– in the House of Commons at 11:00 am on 26th November 2021.

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Proceedings resumed.

Photo of Tom Randall Tom Randall Conservative, Gedling 11:32 am, 26th November 2021

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 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.

Photo of Nicholas Fletcher Nicholas Fletcher Conservative, Don Valley 11:38 pm, 26th November 2021

It is a pleasure to follow my hon. Friend 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 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.

Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care) 11:40 am, 26th November 2021

I am grateful for the opportunity to speak for the Opposition on this very important Bill. I commend 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 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?

Photo of Kerry McCarthy Kerry McCarthy Shadow Minister (Transport)

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.

Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care)

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.

Photo of Liam Fox 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.

Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care)

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.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care) 11:50 am, 26th November 2021

I, too, congratulate my right hon. Friend 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 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.

Photo of Douglas Chapman Douglas Chapman Shadow SNP Spokesperson (Small Business, Enterprise and Innovation)

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?

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care)

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.

Photo of Charles Walker Charles Walker Chair, Administration Committee, Chair, Administration Committee

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.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care)

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.

Photo of Liam Fox 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).