Down Syndrome Bill

Karin Smyth Excerpts

Committee stage
Wednesday 26th January 2022 Public Bill Committees

[Dr Cameron]

Absolutely. That is the important reason we are all here—to make a difference to constituents’ lives. The hon. Member has shown that the Bill will have a positive impact on her constituent’s life; I am sure that across the Chamber we have all had many similar emails. The right hon. Member for North Somerset addressed some of the hopes for other conditions, which were also raised with me. I am pleased to support the Bill wholeheartedly and to have seen it progress so rapidly.

[Karin Smyth (Bristol South) (Lab)]

I congratulate my neighbour, the right hon. Member for North Somerset, on his work and on bringing together so many colleagues across the House. Everyone has worked enormously hard on this Bill. I thank the Minister for her co-operation. We should have more poachers turn game keepers—they are all terribly welcome.

As Members have said, the families of the 40,000 people with Down syndrome are all watching and listening to the debate carefully. As my hon. Friend the Member for Nottingham North (Alex Norris) previously said, we take every opportunity to remove all the barriers and to tackle stigma and the poverty of ambition that hold back progress in this area. The Bill is the perfect opportunity to do that, particularly around housing, mental health provision and education—all key areas that can really improve and empower those with Down syndrome across the country.

I welcome the Bill and the amendments. As the Minister said in the last debate, the Government recognise that the legal duties and frameworks are already in place. The duty under the Care Act 2014 is to assess people based on need and not diagnostic categories. It is vital that every person’s needs are met to ensure that they can fulfil their potential in their lives. This Bill is about people, not a condition; as it is implemented, we need to recognise that every individual will have their own specific needs. Social care is facing unprecedented strain, so new responsibilities must come with an assessment of investment.

I welcome the Department’s commitment that new guidance will be formed in consultation with partners, and a new burdens assessment will be undertaken ahead of that guidance. As you know, Ms Elliott, having chaired some of the sittings, I spent six weeks in Committee on the Health and Care Bill throughout the autumn. The provisions about having a named accountable person on the integrated care system and the guidance are very important and welcome developments. If the Government could learn from this Bill and take that approach more widely to the current legislation and other legislation, that would be not only good practice but very welcome for Members of Parliament and our constituents.

Our constituents expect us to see guidance and perhaps be part of scrutinising it, raising objections and problems and improving it—that is the role of a Member of Parliament—before that guidance is developed by organisations that are not accountable in the same way and imposed on our constituents. Bringing that circle back, so that Parliament has a greater role in the guidance, is really a very important step, and I hope that that starts to permeate not only the Department of Health and Social Care but other Departments and, indeed, current legislation.

I very much commend the right hon. Member for North Somerset for introducing amendments 1 and 2. They will be landmark—really important. I commend the Minister for working with the right hon. Gentleman to agree to them, and I thank everybody involved in the Bill. I agree with the right hon. Gentleman: this is an example of how Parliament and the proper role of Members of Parliament can be made real. That is only for the good of our constituents.

[The Minister for Care and Mental Health (Gillian Keegan)]

It is an absolute pleasure to serve under your chairmanship, Ms Elliott; I think it is the first time. I am delighted that the Bill has received the same endorsement today from across parties as it did on Second Reading. What can I say? My right hon. Friend the Member for North Somerset has really set an example to all of us. I guess that is the voice of experience—30 years in various roles around this place, which have enabled him to optimise and maximise the situation and to get all colleagues rowing in the same direction. It is very important for a Member to do that if they are to get their private Member’s Bill into legislation; as we know, that is not typical.

Some 47,000 people in the UK have Down syndrome. It cannot be right that people with Down syndrome and their families should have to fight for access to appropriate services. I have seen this personally, as my right hon. Friend mentioned, with my nephew Joseph Gibson. Although Joseph is now happy and thriving—he is 15 now —it has not always been easy for my brother Marcus and sister-in-law Sara to secure the support that they need and that meets his needs.

That is what we want to change through clause 1, which provides that relevant authorities will be issued with guidance that they will implement locally. The guidance will enable those authorities to understand the needs of people with Down syndrome and how best to meet them. Of course, we will consult widely on the development of the guidance.

Once the guidance is published, the Government will keep it under regular review and update it periodically to ensure that it remains fit for purpose. It is very important that, when going through the clauses of the Bill, we put the right things in place, and that we do that with wide consultation. I thank my right hon. Friend for tabling the amendment to require the Government to lay the guidance before Parliament upon publication, because people here have a lot of experience and a lot to give. I am pleased to support amendment 1, which will bring this important guidance to the attention of Parliament once it has been published.