Down Syndrome Bill

Suzanne Webb Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Dr Fox]

I am grateful to the hon. Gentleman for his point and perhaps I should explain why we did not bring this forward as a whole of the United Kingdom Bill. I did not want this to become an argument about the rights and wrongs or responsibilities of different parts of devolved Administrations in the United Kingdom; it has to be about people. If we can encourage other parts of the UK, through whatever systems of government are responsible for these issues, I hope the unity that exists across the House and the fact that this Bill was sponsored by all parties in the House of Commons will be a guiding light to those other parts of the United Kingdom about the urgency of making these rights available to all.

I end on the following point. This is not a Bill about a condition. It is not about dealing with Down’s syndrome; it is about people who deserve the same ability to demand the best health, education and care as the rest of our society. It is not on our part an act of charity; it is an act of empowerment and a recognition that all members of our society must have a right to respect, independence and dignity. That is why I have brought this Bill forward.

[Suzanne Webb (Stourbridge) (Con)]

Will my right hon. Friend give way?

[Dr Fox]

No, as I am concluding.

For all the Drews, Freddies, Maxs, Fionns, Tommys and Bethanys it is not our voices that resonate in Parliament today, but theirs, and my message to them is, “You have been heard, at last.”

--- Later in debate ---

[Suzanne Webb (Stourbridge) (Con)]

I thank my right hon. Friend the Member for North Somerset (Dr Fox). I am thrilled to be here in support of this Bill, a Bill that will destigmatise Down’s syndrome, and its ambitions. The hon. Member for North Antrim (Ian Paisley) asks, “Why didn’t we think of this before? Why haven’t we done this sooner?” and he is right.

When I was doing my research for the debate, I found the information online about the syndrome very factual. It fails to say what amazing people those with Down’s syndrome are: people who make significant positive contributions to society, living fully independent and semi-independent lives, achieving more than ever, attending mainstream schools, passing exams, gaining employment, getting married and, of course, becoming actors.

From the age of 17, I spent 13 years doing Birmingham PHAB Camps, which are holidays for those with a physical or mental impairment or learning difficulty, including those with the syndrome. The other half of the group were those who were socially disadvantaged. The aim of the holidays was integration and, of course, a thumping great holiday. The important thing about the holidays was that, by midweek, there was a blurring of lines about who we were. No one would have been able to tell the difference between volunteers, people with a learning difficulty or physical impairment, or those who may have had Down’s syndrome.

The holidays achieved their aim and were such great fun. They were the best one-week holidays ever, learning the importance of inclusivity and parity of esteem for all. It was about integration of everyone, regardless of perceived disability. It was about integration of everyone, regardless of perceived disability. It was about independence for those on the holiday; everyone had a role to play. At the start of the week, there was a distinct unfamiliarity with those who were perceived to be different. By the end of the week, there was total integration and a clear understanding that a disability does not define anyone. It showed how important it is to ensure that where possible, those with the syndrome can live a life of independence, and that they should not be marginalised or seen as a problem. My right hon. Friend the Member for North Somerset, in wrapping up, said basically that we should be defined not by who we are, but by our talents, and I completely agree. We should not be defined by a physical, mental or learning disability, and no one should be defined as a second-class citizen.

Those holidays were just the best times—rattling around the Welsh countryside in beat-up minibuses, days on the beach and the infamous last night party. The holidays were also very much about friendships and connection, and I have so many fond memories. We all have a unique connection for our whole lives, and many of us are best friends for life—Tommy, Dave, Dawn, Nursey, big Dave and fit Dave, and not forgetting young Claire and Nobby, to name but a few of you all.

If this Bill supports in any form the desire to re-educate both the public and professionals about those with Down’s syndrome, and the advances—including in life expectancy—that have occurred in recent decades for Down’s syndrome, it has my support. Of course, this Bill does just that. It will not fix everything, but I welcome it because the principles are so important—enabling people to live as independent and prosperous a life as possible. To do this, it is important that we recognise their specific healthcare, educational and housing needs, and that local authorities play their part. That is not mission impossible, surely, and this Bill is a good start.

It is so important that we get the language right, and this Bill does so. It is a Bill that is set to improve the lives of people living with Down’s syndrome, who just need chances in life, like everyone else. I am delighted that it will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.

The Bill aims to ensure that certain health, education and local authorities take account of the specific needs of people with Down’s syndrome when exercising their relevant functions. That builds on the Government’s stated commitment to improve outcomes for people with a learning disability; support those with Down’s syndrome and their families, who have struggled to access services; and improve support in schools and social care support. The Bill aims to address those issues by providing guidance to authorities on how to meet the needs of persons with Down’s syndrome when carrying out their existing duties in certain specific areas.

It has been questioned whether the Bill’s aims will be achievable, particularly around destigmatisation. I do not agree with that, however; I believe that any step or measure will be a huge leap in the right direction. I understand, too, that there are some concerns about whether the guidance alone will produce the desired outcomes, and about the approach of breaking out Down’s syndrome from other learning disabilities or chromosomal disorders. The duties do not require, and are not intended to result in, enhanced treatment being given to those with Down’s syndrome over and above other groups, especially those with learning disabilities.

I hope at a future time to be having a similar debate about DiGeorge syndrome. While Down’s syndrome is caused by having an extra chromosome at birth, DiGeorge syndrome is caused by a problem with a person’s genes, called 22q11 deletion. It is hot on the heels of Down’s syndrome in terms of its prevalence in society, and I very much hope to bring it to the House’s attention. I hope that all who are participating in this debate will join me in a future debate to raise awareness of DiGeorge syndrome. For those who have the syndrome, or for family members who need support, I highly recommend Max Appeal.

I wonder whether the Minister can help me. The Government have announced investment in “generation genome”, a pioneering newborn screening programme to detect more than 200 rare diseases. That is part of a £95 million investment in the Office for Life Sciences, I think. Do we know whether 22q will be part of that? If it is, that would be a beyond huge step forward.

Finally, I dedicate my speech to Mark Chadwick, who was born with Down’s syndrome. And I say, so what? I have known Mark since 2015, and he has been a trusty steed since we first met—a charming, bright, engaging individual with a passion for dancing and politics. He recently applied to be a town councillor. I am very proud to call him my friend. He is a fine example of why the Bill is so important, and I am sure that he would agree with George Webster: why did we not think of this before? I 100% support this most excellent Bill.