Down Syndrome Bill

Part of the debate – in the House of Commons at 11:40 am on 26th November 2021.

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Photo of Alex Norris Alex Norris Shadow Minister (Health and Social Care) 11:40 am, 26th November 2021

I am grateful for the opportunity to speak for the Opposition on this very important Bill. I commend Dr Fox for using his precious private Member’s Bill slot on this important matter, and I understand this is his first success in the ballot in 29 years, so roll on 2050 for the next one.

The right hon. Gentleman said plenty that will have moved people who are watching as well as Members in the Chamber, particularly the comment that I will reflect on now and over the weekend, too. This Bill is not about a condition: it is about people, and it is not about charity; it is about empowerment. That really struck me, and it is important.

We have heard that 47,000 people in this country, across every nation, region and constituency, are living with Down’s syndrome. They are people with hopes and dreams, who love and are loved, and they have a right to live full lives and to reach their potential. The right hon. Gentleman is taking a major step in that direction with this Bill.

We have had brilliant contributions from colleagues on both sides of the House, and I will try to group them into themes. As this Bill is human rights legislation, as the hon. Members for North Antrim (Ian Paisley) and for Stourbridge (Suzanne Webb) and my hon. Friend Dame Meg Hillier said, I share the enthusiasm of the hon. Members for Dunfermline and West Fife (Douglas Chapman) and for Berwickshire, Roxburgh and Selkirk (John Lamont) that there should be a four-nations approach in the years to come.

There were moving contributions from the hon. Members for Broxbourne (Sir Charles Walker), for Meon Valley (Mrs Drummond), for Buckingham (Greg Smith), for Carshalton and Wallington (Elliot Colburn) and for Don Valley (Nick Fletcher), who brought the debate to life by raising constituency cases. We can throw around the statistics about tens of thousands of people, but each one of them is an individual with different needs, different hopes and different dreams, and they should be treated in that way.

Alongside the 47,000 people, there are tens of thousands of families—mums, dads, sisters, brothers and cousins—who I know will have listened to the debate. My family is one of those tens of thousands, so I am especially grateful to the right hon. Member for North Somerset for giving us the opportunity to take a leap forward in the support available for people living with Down’s syndrome.

I was born in 1984, when life expectancy for a person with Down’s syndrome was about 25; it is now into the 60s. People with Down’s syndrome have basically gained a year every year for my entire life, which is wonderful and it shows the advances we can make when we prioritise the human rather than the condition, and when we are ambitious for everybody and do not define people by the challenges they live with. We know that, with appropriate support, people with Down’s syndrome can thrive at school, can work, can marry and can live full lives. We have to take every opportunity to remove all the barriers, to tackle stigma and to tackle the poverty of ambition that hold back progress in this area, and this Bill is a perfect opportunity to do so.

I note that the right hon. Gentleman has secured Government support for the Bill, so its passage is likely to be smooth. Clause 1(1) provides for the Secretary of State to publish guidance to relevant authorities to make sure they meet the needs of people with Down’s syndrome, which is a powerful tool and I look forward to hearing from the Minister about what she envisages being part of that.

Under clause 1(3) there is an expectation that the Secretary of State will consult. As other colleagues have said, that is important. It must start with individuals with lived experience, so they can tell us what change they need in their lives and what challenges they have had to negotiate. It must also apply to their families—the hon. Member for Carshalton and Wallington talked about it being a battle, which is a common theme in the stories of the families who I have spoken to and who we have heard about today. Beyond that, it is crucial that Ministers talk to clinicians, commissioners and decision makers. I am sure that the Minister will not want to be prescriptive about a consultation today, but she might set out some of its broader themes.

The schedule to the Bill highlights four areas in which the right hon. Member for North Somerset is seeking guidance to be made. I will touch on them briefly in turn. On the national health service, it is vital that healthcare services are responsive to and ambitious for people living with Down’s syndrome so that they get world-class healthcare. We can be proud of the progress made over the last few decades, but we must make sure that we are as ambitious about mental health as we are about physical health and that the progress in physical health can be matched in mental health. I hope that the Minister reflects on that in her closing remarks.

The Bill also references clinical commissioning groups. The Health and Care Bill is going through this place—we debated its remaining stages on Monday and Tuesday—so the commissioning landscape will change. Can the Minister tell us how the language will change to reflect the fact that the Bills are progressing at the same time?