Alex Norris – 2021 Speech on Down Syndrome

The speech made by Alex Norris, the Labour MP for Nottingham North, in the House of Commons on 26 November 2021.

I am grateful for the opportunity to speak for the Opposition on this very important Bill. I commend the right hon. Member for North Somerset (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 the Member for Hackney South and Shoreditch (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?

Kerry McCarthy (Bristol East) (Lab)

To return to what my hon. Friend said about mental health concerns, when people with disabilities and conditions such as Down’s experience mental health problems that are not necessarily connected to their condition, treatment can be more difficult and it can be difficult to identify that they are developing mental health problems. Perhaps it is more a point for the Minister, but I hope that we can bear that in mind when we are looking at how we treat people with Down’s.

Alex Norris

I am grateful for that intervention. Members on both sides of the House share a commitment and an ambition to make significant advances in the mental health of the British people. We know that there are barriers for people with the most profound physical health conditions because, traditionally, we have not looked beyond those conditions to evaluate the mental health aspect. I hope that the Bill is a good opportunity to do that.

On housing, we know that with the right support, people with Down’s syndrome can live semi-independently, so we must make sure that the right type of housing, sensitive to need, is available and distributed across the country. Has the Minister made a baseline assessment of where we are and what we might need to do better?

Hon. Members have made important points about education. At the risk of repeating more of what the hon. Member for Carshalton and Wallington said, the points about education, health and care plans were well made and I hope that they were heard. I took from his contribution that they cannot be pro forma exercises; they must be individual exercises that meet individual needs. That is the purpose of having them.

Linked to that, on employment, only 6% of people with a learning disability in this country are in employment. We should aspire to do much better. Work gives purpose, independence and dignity, and is part of the collective investment that we make in each other. Our ambition is for everybody to be in work who can be, irrespective of their challenges. We need a full strategic plan on the active steps that we can take to show employers the benefits of hiring staff with learning disabilities and the support that can be offered to help to facilitate that. It is important to understand that it is a win-win because, as global studies show, workplaces hiring employees who live with Down’s syndrome are happy and productive.

The right hon. Member for North Somerset made the point about redress, which is an important and live conversation in this country. To read across, if I may, to the Cumberlege report and the impact of sodium valproate and Primodos on children who are born having been exposed to them, those families still cannot get redress—in many cases, many decades later—without an expensive, long and hard pursuit in the courts. That system is not working. The report recommended that a redress system be set up to avoid that, which has not happened as the Government have not accepted the recommendation. It should not be happening to them and it should not happen here, so I hope that, through the Bill, we can do better for people living with Down’s syndrome and for others.

Dr Fox

There is, of course, a great carrot for the Government in producing a workable redress system, which is that, if it is not fixed in this Chamber, it may be fixed in the other place. One way or another, however, I assure the hon. Gentleman that it will be fixed.

Alex Norris

I am very grateful to the right hon. Gentleman for that, although I am not sure that it was a carrot as much as a stick. However, I know that noble Lords will be taking the same interest in the Health and Care Bill, and I absolutely share his confidence in that sense.

To finish, I look forward to seeing this Bill in its next stages, and we want gains to be made in the four areas in the schedule to the Bill. I would make the very important concluding point that, particularly in relation to local authorities, social care is distressed and under-invested in in this country, so if there are new responsibilities, there must be new investment to come with that. We will continue to make such points at future stages. This requires Government commitment, and it is good that we are hearing that today, but also the resources to sit behind it, and I hope we hear that, too.