Down Syndrome Bill

Gillian Keegan Excerpts

Friday 26th November 2021 Commons Chamber

[The Minister for Care and Mental Health (Gillian Keegan)]

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]

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]

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.

[Sir Charles Walker]

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]

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.