Down Syndrome Bill

Debate between Lisa Cameron and Liam Fox

Committee stage
Wednesday 26th January 2022 Public Bill Committees

[Dr Fox]

The Minister may say something about that when she makes her remarks, but it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to other conditions of that nature.

Again, the fact that the guidance will be laid before Parliament gives us an opportunity in Parliament to deal with the very issues that many Members have reasonably raised. As all colleagues will know, we put Down syndrome as the only condition because of the difficulty of getting a private Member’s Bill through. Getting support requires it to be simple and concise. The fact that the guidance is laid before Parliament enables us to take the legislation forward in a proactive way without too much actually being said in the Bill. That is a good model for how we can take legislation of this nature through in future. I am grateful to my right hon. Friend the Member for Scarborough and Whitby and congratulate him in Committee for the first time on the honour recently—belatedly but very justifiably—bestowed on him.

I go back to the point: the fact that the guidance is laid before Parliament gives us all the chance, on behalf of our constituents, to look at some of these other conditions. If it applies for Down syndrome, why should it not apply in the same way and through the same mechanisms for other conditions? That is an important issue for the Committee to have addressed. With that, I conclude my remarks.

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

I only want to thank everybody across the parties who worked so hard on the Bill; it has been so heartening to see Parliament come together on something so important. As chair of the all-party parliamentary group on Down syndrome, I have had so many emails from people who are right behind the Bill and think that it will be ground breaking in giving them the recognition that they feel is so important in their lives and for their families.

This is an important piece of legislation, and I thank everybody who has contributed to it. The right hon. Member for North Somerset, who led it, has been exemplary in bringing people together and ensuring that the process is positive.

--- Later in debate ---

[Gillian Keegan]

As one of the Ministers who is a disability champion, I completely agree. It is only when one tries to take a view from the perspective of someone who has some kind of disability that it becomes possible to understand how difficult it is to do many daily things. Whether it is people with physical or learning disabilities, the more that we understand their perspective the more we can accommodate them. That, of course, makes a massive difference for somebody who has more to deal with on a daily basis than perhaps we do. It is important that we all take up the training that we are offered.

I thank my right hon. Friend for tabling amendment 3, which updates the long title of the Bill. I agree with those proposals. As outlined, this guidance only applies to England, as healthcare, education and housing are all devolved matters. I know there is also firm commitment from my counterparts to improve the outcomes for people with Down syndrome in Scotland, Wales and Northern Ireland, including through legislation. I look forward to working collaboratively with the devolved Administrations on this matter.

Regarding the schedule, it is important to have clarity within the Bill about who the relevant authorities are, and what functions the guidance will apply to. The list of authorities and their functions has been drawn from existing legislation, such as the Care Act 2014, the Children and Families Act 2014 and the Housing Act 2004. For that reason, the Government support the schedule.

This Bill is hugely significant. It will improve the lives of people with Down syndrome, improve their prospects and improve their families’ lives. I am proud to support it on behalf of the Government as it progresses through Parliament. I thank all the hon. Members for their support. To be in this privileged position, and to be able to use that privilege to make a massive difference to people, is probably what brought most of us here. I thank everybody for their support of the Bill.

[Dr Fox]

One question that was often asked before Second Reading, and continues to be asked, is: “Why Down syndrome?” Many have written to all members of the Committee, I imagine, saying, “Why pick a particular condition? Why not simply have it lumped in with learning difficulties?” The point is that those with Down syndrome and their families know that it is much more than “just” another learning difficulty.

There is the addition of complex health conditions—very complex, in many cases. The changes in demographics, which we discussed on Second Reading—for the first time, many of those with Down syndrome will outlive their parents—bring an element of the importance of care into the equation. Rather than singling out a single grouping, we have shown the increasingly complex needs that a range of different conditions will require, as medical science improves and we have greater life expectancy, which is something we should celebrate, as a society.

The point has been made, as it was on Second Reading, that this Bill is not about a condition, but about people—people who have a particular condition, their families, and the people who care for them. We are talking about individuals who, I believe, have for too long been more vulnerable than they need to be, and were overlooked by a series of pieces of legislation, which did not adequately take into account the combination of needs that they uniquely have.

We all come to this Bill from our personal experiences. As I said in the Chamber, my personal experience is through growing up next door to someone with Down syndrome, from working with people with Down syndrome and, as a doctor, coming into contact with a lot of them. I would like to say a couple of things about what this Bill is not. First, it is not a UK Bill; we purposely took that decision very early on. We could have made it a United Kingdom piece of legislation, and effectively confronted the Welsh, Scottish and Northern Ireland Governments, saying, “You must give us the legislative consent.” That would not have been in the interest of people with Down syndrome. It would have made it a constitutional Bill, with the arguments becoming about constitutional propriety and not about those who are actually involved.

I hope that, with the House of Commons taking this decision, we will see legislation from the devolved parts of the UK giving equal rights to those who live under those devolved systems. It should not matter where someone lives in the United Kingdom; they should have access to the same quality services, the same representation, and the same parliamentary remedies as anybody else. That is why the Bill was designed as it has been.

[Dr Cameron]

I thank the right hon. Gentleman for bringing those issues to the attention of the Committee. The Scottish Government are well aware of the Bill and its merits. They have had discussions and indicated that they will be taking similar types of legislation through their own processes, to see progress made.

[Dr Fox]

I am obviously aware of the discussions that we have had around that. I hope that the devolved Administrations will look at the timetable of the Bill’s passage through Parliament and when it is likely to get Royal Assent, to ensure that there is no time gap between the rights of those with Down syndrome in England and those in other parts of the UK. Those who the devolved Administrations represent should expect no less.

My final thought is that, as with any piece of legislation, this Bill will not be perfect. No Bill is perfect and no Bill requires no further work or changes, but getting the legislation on the statute book is, in itself, a statement of intent. It is a statement of recognition of the needs of those with Down syndrome. We know that private Members’ Bills will generally be limited in scope if they are to get through the House of Commons, but I believe the amendments to the Bill have, as I said earlier, taken it from being a good and well meaning Bill to a landmark Bill: we have signalled not just intent, but how we will give effect to that intent.

All too often we pass legislation in Parliament that sets out great rights and therefore expectations, but we do not set out the mechanisms by which those expectations can be realised. That is the real importance of the amendments. They may look small today and may not be commanding the front pages tomorrow, because they were not accompanied by bottles of wine, but it is important that the Committee understands the importance of what we are about to vote for. We have shown, by setting the guidance in front of Parliament, that there is a link between those who require change and those who can institute the change. That is as it should be, and that is exactly what those we represent have a right to expect.

Amendment 1 agreed to.

Amendment made: 2, in clause 1, page 1, line 12, leave out “(4)” and insert “(4A)”.—(Dr Fox.)

This amendment is consequential on Amendment 1.

Clause 1, as amended, ordered to stand part of the Bill.

Clause 2 ordered to stand part of the Bill.

Schedule agreed to.

Amendment made: 3, title, line 1, leave out from “syndrome;” to second “and” in line 3.—(Dr Fox.)

This amendment brings the long title into line with the content of the Bill.