Down Syndrome Bill

Debate between Siobhan Baillie and Gagan Mohindra

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.

--- Later in debate ---

[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.