Down Syndrome Bill

Robert Buckland Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Dr Liam Fox (North Somerset) (Con)]

I beg to move, That the Bill be now read a Second time.

Before I turn to the purpose and contents of this Bill, let me begin with some thanks. First, I thank those who helped us out at our photoshoot the other day: Fionn, Max and Freddie. I am sure that all those Members who were there would like to add their appreciation. We are very sorry that it took so long, but we are very grateful to them for their patience and their fortitude. I also thank the 107 MPs who turned up to offer their support on that occasion. I thank the role models for those with Down’s syndrome, particularly Tommy Jessop and Bethany Asher, who have blazed a trail for others to follow.

I thank the co-sponsors of the Bill, my hon. Friend the Member for Bolton North East (Mark Logan), the hon. Member for Bristol North West (Darren Jones), my hon. Friends the Members for Bury North (James Daly) and for Carshalton and Wallington (Elliot Colburn), the hon. Member for Ceredigion (Ben Lake), my hon. Friend the Member for Don Valley (Nick Fletcher), the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), my hon. Friend the Member for Meon Valley (Mrs Drummond) and the hon. Members for North Antrim (Ian Paisley) and for Oxford West and Abingdon (Layla Moran). It is quite a roll of honour.

I also thank the organisations that have supported us, in particular Edel Harris, the chief executive of Mencap, Ken and Rachael Ross of the National Down Syndrome Policy Group and Portsmouth Down Syndrome Association, Sue Dennis and Joanna Thorn of Up and Downs Southwest and others including Positive About Down Syndrome, PSDS and Annabel Tall, my constituency assistant, whose son Freddie, who has Down’s syndrome, was the reason we first met when she came to one of my constituency surgeries.

Finally, I thank those who have helped us get the Bill to this point, especially the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), who has gone out of her way in the most exemplary fashion to help us get the Bill to the shape it is in today. I also thank David Nuttall, one of the civil servants in the Department of Health and Social Care, who has been instrumental in putting the Bill together. Civil servants do not always get fulsome praise on the Floor of the House, but let me say on this occasion that it is more than deserved. Finally, I thank David Goss in my own office, whose tireless efforts have helped Members of Parliament and those involved play a full part in where we have got to today. If I have missed anyone else, it is my memory, not my lack of appreciation that is at fault.

The first question that people have tended to ask about this private Member’s Bill is, “Why? Why this issue, and why now?” Let me answer that in three ways. First, there is the challenge faced by those who have Down’s syndrome. When a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population. Inevitably, their families, too, will face different challenges. They will come in the form of medical problems, educational needs and long-term care challenges.

Let me start with the medical challenges. The medical problems associated with Down’s syndrome can manifest in many ways. Congenital heart defects are often first. Approximately half of all infants born with Down’s syndrome have a heart defect. Down’s syndrome is a major cause of congenital heart disease and the most frequent known cause of atrioventricular septal defects. There is also likely to be: higher incidence of hearing loss and poor vision, with increased incidence of cataracts; orthopaedic problems, including hip dislocations; and, more seriously, leukaemia. Children with Down’s syndrome are at an increased risk of developing any type of acute leukaemia. In particular, they are 150 times more likely to develop acute myeloid leukaemia and around 30 times more likely to develop acute lymphoblastic leukaemia. There is also increased incidence of hyperthyroidism, low thyroid function, obesity and Alzheimer’s disease in later life. People with Down’s syndrome are also more prone to infection and may struggle with the respiratory infections, urinary tract infections and skin infections that the rest of the population will deal with relatively easily.

Next, we come to intellectual development issues, one area where public perception tends to be inaccurate. Although it is true that people with Down’s syndrome usually have some degree of developmental disability, it is often mild to moderate, which means that for many a fulfilled life with meaningful employment and social integration is possible. Lumping every child with Down’s syndrome into the category of “severe learning difficulty” is to fail to understand the reality and complexity of the situation.

[Robert Buckland (South Swindon) (Con)]

My right hon. Friend has come to a very important part in his speech, because there is a real concern among people with Down’s syndrome and their families that the system or other people ascribe a value to their lives that they have no business in doing. The value of the lives of people with Down’ syndrome is immense, and what we should be doing is making sure that they can access mainstream services just like the rest of us, rather than ascribing some sort of lower value to the quality of their lives.

[Dr Fox]

I am grateful to my right hon. and learned Friend, because he makes an important point that I will return to later about the need for dignity and independence, and to stress that there are no second-class citizens when it comes to Down’s syndrome.