Down Syndrome Bill

Baroness Thornton Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Thornton (Lab)]

My Lords, we have had a fascinating debate, in which the passion for supporting people with Down’s syndrome is absolutely undoubted in this House. I pay tribute to and congratulate Dr Fox, on bringing the Bill forward, and the noble Baroness, Lady Hollins, on her tireless work for those with learning disabilities over many years. These Benches have often been pleased to follow her lead and support her in this endeavour. I do not doubt that many of the 40,000 people with Down’s syndrome and their families will be watching and listening to this debate today, so I am happy to assure them that the Labour Benches will support the Bill at Second Reading.

We recognise that there are questions that will need to be answered during the Bill’s passage, and I am sure the noble Baroness, Lady Hollins, is aware of that. Of course, the first, identified by several noble Lords, is that singling out Down’s syndrome potentially misses the opportunity to ensure that authorities consider other conditions: autism, Rett syndrome and Williams syndrome. Indeed, the Genetic Alliance has contacted me to express its concern about other conditions being relegated. We do not want to create a hierarchy.

For example, as has been mentioned, antiviral Covid treatments have recently been approved for people with Covid-19 who are at the highest risk of becoming seriously ill. Down Syndrome is at the top of the eligibility list whereas other genetic conditions that confer the same or similar risk of becoming seriously ill are not mentioned at all. We do not want to be involved in something that inadvertently creates those kinds of problems and challenges for other learning-disabled people.

However, I welcome the department’s commitment that new guidance will be formed in consultation with key stakeholders. As your Lordships’ House may know, the Health and Care Bill, which many of us here have been involved in, sometimes late at night, has finished its Report stage. I need to congratulate the noble Baroness, Lady Hollins, on the commitment that she gained only this week, and I quote her from Hansard:

“I am very grateful … to the Minister and to all those working behind the scenes for reaching this point and accepting my amendment, as well as for committing to include a learning disability and autism lead on integrated care boards.”—[Official Report, 16/3/22; col. 398.]


My first question is that I wonder whether the noble Baroness may have inadvertently made the Bill a redundant piece of legislation because of the success that she has already had in raising the issue and getting it included in the Health and Care Bill, which we have had before us for what seems like quite a long time—the last month or so. That is my first question to the noble Baroness and the Minister. My second question to them is that I would like to be assured that the work being undertaken will not disadvantage other people with learning disabilities. I would like to be assured by the Minister that if the Bill proceeds, people with Down’s syndrome, in their diversity, and their chosen advocates will be meaningfully involved at every stage of the co-production of the guidance.

I am concerned about some of the rhetoric that has surrounded the Bill. I would like the noble Baroness and the Minister to confirm that the Department of Health and Social Care has no plans, as a consequence of the Bill, to develop any new guidance or amend any existing guidance concerning maternal healthcare and reproductive rights.

I wish the Bill the best, and I look forward to the discussions that we shall have about it in Committee in your Lordships’ House.