Down Syndrome Bill

Siobhan Baillie Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Siobhan Baillie (Stroud) (Con)]

It is a pleasure to speak in this debate. I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on all of the work that he has done. I see that team Freddie and a number of friends are in the Public Gallery providing their support.

This Bill means a lot to thousands and thousands of campaigners. There are 47,000 people with Down syndrome and their families around the country. I give particular credit to the families from Stroud and Gloucestershire who have reached out to me to express their delight that this Bill has been introduced and also to explain their experiences and why it is so important. This is actually a spectacular use of a private Member’s Bill. I am also thrilled that the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), is at the Dispatch Box. We have discussed Down syndrome for many, many years, because we are both blessed with nephews with Down syndrome. Those boys give us great joy, particularly as a distraction from this mad job.

The Bill proposes, for the first time, a duty on the Secretary of State to give guidance on housing, education, youth offending and national health authorities. It also imposes a similar duty on the relevant authorities, which is very important. The guidance will set out the steps required to meet the needs of people with Down syndrome, and I sincerely believe that it will be the start—and it is the start—of many other areas of policy and work to undo some of the problems that people with Down syndrome face in their daily lives.

My nephew, Rhys, is now 19 years old. He is the light of every room he enters. He works for the Thames Valley Cleaning company at the Select Car Leasing Stadium for the Reading Royals. He is right royally unimpressed with me—I am not cool, particularly when I am in a suit on the telly, so I hope he is not watching now. Let me relate part of Rhys’s story—[Interruption.] I am sorry if I get upset. It is not just because I am pregnant; I once tried to talk about Rhys in Camden Council many years ago and cried then as well—

[Mr Mohindra]

Let me give my colleague a brief respite. I know that she is a massive fan of the Bill of my right hon. Friend the Member for North Somerset (Dr Fox) and I look to hearing further words from her.

[Siobhan Baillie]

I am blessed by having great colleagues in this Chamber.

Alice fell pregnant aged 15. As she was so young—we had no Down syndrome in our family and there is a common belief that only older, geriatric mothers as they are often referred to in maternity terms have Down syndrome children—Alice was not offered any advice. She did not have any discussions about Down syndrome. She was 15 and scared. Her family was not around her, we did not know about the pregnancy in the early stages, and I doubt that she asked any questions. It was 20 years ago, too, so there were few smartphones and limited ability to google.

When Rhys was born, Alice was immediately in love with her baby son, but a few days later, my nurse mum spotted signs of Down syndrome. Notwithstanding the absolute love that she felt for her child, it is fair to say that my sister was pretty shocked by what was happening. Remembering that she was still a child herself and all the hopes and dreams that go into a pregnancy, I have since spoken to other parents of Down syndrome children and parents of other children with disabilities—

[Mr Mohindra]

On that point, does my hon. Friend agree that we need a real focus not just on the person with Down syndrome but on the bubble around them—carers, friends and family—because they are involved in the potential ups and downs of the journey as much as the person with Down syndrome themselves?

[Siobhan Baillie]

I completely agree. I have spoken to other parents who have discovered upon their child’s birth that they have a child with a disability about their fear, and about the loss of their hopes and dreams; their belief that they would take the child to university, or to get married, is dashed. With Down syndrome in particular, people believed that the child would die aged about 30. There is such a lack of education. That was particularly the case when Rhys was born, but I think it is still true now. Thinking about the bubble—the whole family—is incredibly important, and that is hopefully what the Bill will do. So much of what we think we know when it comes to disabilities is often not true.

[Ruth Edwards]

My hon. Friend is giving an incredibly powerful account of her personal experience. I know that she works with many parents and people with Down syndrome. Does she think that support for new parents to come to terms with and understand the condition of their child has improved at all since her sister gave birth, or does she believe that we are still quite far off the mark?

[Siobhan Baillie]

That is a really important question. I think there have been improvements—my right hon. Friend the Member for North Somerset will attest to that—but there is still a lack of understanding and education. We have a real issue with people feeling that they need to have a termination when they are told about Down syndrome. There is a big campaign on not screening out children with Down syndrome, because they live very fulfilled lives and bring great joy to so many people. Education for all is really important.

[Jonathan Gullis (Stoke-on-Trent North) (Con)]

Let me quickly add my support for the Bill introduced by my right hon. Friend the Member for North Somerset (Dr Fox). On the point that my hon. Friend the Member for Stroud (Siobhan Baillie) made about education, we need education not just for expectant parents or young people but for employers too. One of the things that shocks me most is that there are plenty of people who have Down syndrome who could, if they wanted, be in our workforce playing a fulfilling role. We know that the benefits of work include increased life expectancy, as well as better physical and mental health. Warwickshire County Council had a great scheme supporting employers to understand how to support not just people with Down syndrome but those with other learning disabilities, and how to make them an important part of their workforce. That encouraged a lot more people to enter the world of work. Does my hon. Friend agree that those are the sorts of things that we need to see happening, so that employers understand the full potential of everyone across our United Kingdom?

[Siobhan Baillie]

I completely agree. Rhys earns £9 an hour—he is far richer than me, because he has no outgoings—but he enjoys his job and he feels fulfilled by it. Schools such as The Shrubberies in my patch do an awful lot of work to make sure that people go on to be work-ready, as do our colleges, such as SGS Stroud. Again, that is why the focus that the Bill will bring for the Government, local authorities, schools—everybody—is so important. We are thinking slightly differently, and I really welcome that.

I should be honest and say that I did not handle my sister’s being pregnant very well. I was still a teenager myself. I genuinely thought that, as a teenage mum, her life was completely over and she would not get to enjoy a lot of the things that I had enjoyed, but I could not have been more wrong. She definitely had a very different life from me in many respects, but I deeply regret my lack of understanding and some of the anger I felt on her behalf. It was unjustified and it was wrong, because Rhys was the best thing that happened to all of us in our family for so many reasons. But, boy, our learning curve has been so steep. I have seen my little sister battle for the understanding of people with Down syndrome.

[Mr Mohindra]

One thing I wanted to mention was to ensure that we realise that this affected all communities up and down the country. It is not specific to a particular geographical area or heritage. Does my hon. Friend agree that the Bill will be beneficial to all communities?

[Siobhan Baillie]

Absolutely. That is so important. When I reel off this list, if I can get through it, Members will understand why it is so important.

I have seen my little sister battle for understanding about Down syndrome. I have seen her battle for the right to medical care for operations in a timely fashion. She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from Rhys being a child to an adult, and she is still doing that. She has battled to get the council to complete the required assessment. She has battled with the welfare system and disability living allowance appeals. She has battled with endless application forms and then had to re-do them because they have been lost by various authorities and had to start all over again. She has battled during covid. I know that a lot of families battled really fearing for their loved ones with Down syndrome, who are vulnerable, often with respiratory issues. Covid was thrown at all of us, but we found that parents were being ignored, or certainly felt they were being ignored, and not prioritised for vaccinations. The whole family was not being prioritised for vaccinations to protect the people with Down syndrome in their homes.

[Edward Timpson]

I think all of us are very moved by what my hon. Friend has had to say. Does she agree that her point about the battles she described demonstrates how important it is that, as the Government develop the guidance—I know my hon. Friend the Minister will very much have regard to this point—they involve the experiences, views, opinions and, I suspect, recommendations of those who have Down syndrome, or their parents, carers and supporters, so that they form the best possible guidance to deliver the right type of support at the right time and in the right way? That might then mean that those battles are much reduced and hopefully eradicated in future?

[Siobhan Baillie]

I thank my hon. Friend for his contribution not just in that intervention, but in his speech. I loved the Shakin’ Stevens stories. I defer to his expertise as a former children’s Minister. That is why the Bill will do so much good. Even the fact that we are having this long debate today with so many colleagues is incredibly moving. I am pleased to see that the Minister is as equally moved as me and that it is not just me with the tissues on these Benches.

These problems have existed under multiple Governments, so parties of all political colours should hang our heads but also want to see improvements. We all know, from our surgeries and inboxes, that parents of disabled children who have to come to see their MP are often completely exhausted. They are exhausted by the fights to get things for their children that they know they should already have or have seen other children have. They also know that they have no choice but to continue fighting. I know that MPs of all political colours try to help, but we have to get better at getting the legislation and the policy right so they do not get to that stage.

The Government are trying really hard to make improvements to legislation and to the system and the practicalities for people with disabilities. The Minister with responsibility for disability, the Minister of State, Department for Work and Pensions, my hon. Friend the Member for Norwich North (Chloe Smith), is absolutely excellent and I have real confidence in her ability and commitment to secure change.

As part of my small role in trying to push through those changes, I sit on the Work and Pensions Committee, and we have been doing an inquiry into things such as personal independence payments. During the inquiry, we heard from an excellent representative from the Down’s Syndrome Association. She gave a few examples of things we can change that directly impact people with Down syndrome. She explained that it is usually the parents making welfare and disability applications.

We have heard today from a number of hon. Members that, thankfully, those with Down syndrome are living much longer. Their life expectancy is no longer 30 years, but 60 years. That means that their parents are also significantly older, and we must bear that in mind. The constant drive for digital-only application is welcome in many respects and will mean there is a record, so hopefully we will not have the constant losing of paperwork that many families have to deal with. However, there are many elderly families and elderly parents who cannot cope with that, and we must build that into our systems.

Separately, there is a new in-person assessment approach to PIP, which can throw up some interesting results—unintended, in some cases. Where previously a family could sit down and do a written submission about what they needed and what they wanted changed in their PIP, doing an in-person assessment is very reliant on the person with Down syndrome.

My nephew Rhys’s favourite word is yes, because he gets a positive response to it. If someone says to him, “Do you play for Reading Royals?”, he will say yes. “Do you run for a bus?” He will say yes. One thing that my sister said made her nearly jump up and down was something like, “Do you have your own life partner or girlfriend?” He was saying, “Oh yes, oh yes.” She said, “No, no, no! He absolutely doesn’t.” We must bear that in mind when we create those policies and programmes, because it will not always work for everybody.

I welcome all the focus on and learning about people with Down syndrome today. I am still learning—I think we all still need to learn from people with Down syndrome and listen to them.

[Ruth Edwards]

I hope Madam Deputy Speaker will forgive me, given the circumstances, but I have just been interrupted by a text message from my constituent Matt Barney, a hardworking councillor in Leake and Ruddington. He tells me that his cousin, Heidi Carter, is with us today in the Public Gallery. She has Down syndrome and campaigns to reduce the age limit at which abortion of babies with Down syndrome is permitted. I wanted to take this opportunity to thank her for all her work and to welcome her here.

[Siobhan Baillie]

I am grateful for that intervention. I am thrilled—I have seen you listening intently, and it is wonderful to have you here today, Heidi.

I will draw to a close, but I believe we must all learn from people with Down syndrome. We will genuinely be a better society for having done so. I commend my right hon. Friend the Member for North Somerset and I thank charities such as the Down’s Syndrome Association—there are many charities that I should have had a big list of, and I apologise that I do not. I also love the Down Syndrome Swimming GB Twitter and Instagram accounts, and enjoy following them.

I thank the Government for listening and taking action. I look forward to seeing this Bill progress to Royal Assent.