Down Syndrome Bill

Liam Fox Excerpts

Committee stage
Wednesday 26th January 2022 Public Bill Committees

[The Chair]

The selection and grouping of amendments for today’s meeting is available online and in the room. I have selected the three amendments in the name of the Member in charge of the Bill, Dr Liam Fox. The amendments will be considered alongside the existing content of the Bill in a single debate.

Clause 1

Guidance on meeting the needs of persons with Down Syndrome

[Dr Liam Fox (North Somerset) (Con)]

I beg to move amendment 1, in clause 1, page 1, line 10, at end insert—

“(4A) The Secretary of State must lay the guidance before Parliament once it is published.”.

This amendment requires the Secretary of State to lay guidance under clause 1 before Parliament.

[The Chair]

With this it will be convenient to discuss the following:

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

This amendment is consequential on Amendment 1.

Clause stand part.

Clause 2 stand part.

That the schedule be the First schedule to the Bill.

Amendment 3, title, line 1, leave out from “syndrome;” to second “and” in line 3.

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

[Dr Fox]

Those watching our proceedings may be surprised at the brevity of our discussions today. It is worth explaining to them that that is not due to any lack of scrutiny in Committee, but to the fact that the Committee has reached consensus before we have come here. We have worked together across parties to deal with the issues that we thought were important. This is a very good example to those who watch Parliament that when Parliament really wants to get something done and Members believe that they are engaged in a worthwhile task, the work can happen in the most efficient way possible.

I thank colleagues for their work in bringing us to this point. I thank the Minister for her outstanding work. Having once been the Friday Whip in charge of private Members’ Bills, I am an example of gamekeeper turned poacher—although that does bring some advantages, including how to get the best out of the Minister. We have very much benefited from having a Minister with personal experience of a family member with Down syndrome. It is also a very good example of why our system of constituency MPs, with our backgrounds and experience, is a very good one when it comes to appointing people to ministerial office.

I thank officials for their work. They have been tireless in trying to bring what were initially some relatively large differences to a position of consensus. I thank colleagues from across the House who are not on the Committee for their support on Second Reading and in campaigns across constituencies to gain support for the Bill.

I thank the public for the widespread support that we have had on the issue. I thank in particular those Down syndrome groups who have gone out of their way to provide support to Members, with anecdotes about personal experience and what they expect from our legislation. It is a pity that there seems to be a small number of people out there who were questioning the measures in the Bill even before they knew what was going to be debated in Committee today. I hope that they will recognise that the intent of the Committee is very clear.

On Second Reading, there was a very clear omission in the Bill. We chose to leave it and deal with it in Committee, rather than inserting a half-baked measure that we would subsequently have to change. The omission was that it was not very well set out how the rights in the Bill could be enforced, for those who wanted to exercise them, and how that could best be redressed. There were two things that I really wanted to see and I am very pleased that the Government have accepted them. I look forward to my hon. Friend the Minister recommitting to those today.

First, if we have new integrated care pathways and integrated care boards, should it not be the responsibility of a named individual to ensure the application of the measures in the Bill, should it become law? In other words, should there not be someone to whom those with Down syndrome or their parents can go, to ensure that the process has been properly applied? Not having that provision would be a serious omission. I look forward to the Minister confirming that there will be a named individual on each board who will be responsible for the application of the measures in the Bill.

--- Later in debate ---

[Sir Robert Goodwill (Scarborough and Whitby) (Con)]

Does my right hon. Friend believe that the Bill creates a precedent for other conditions such as 22q11.2 deletion syndrome, which affects a smaller number of people but manifests in a similar way?

[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 ---

[Dr Fox]

As well as the issue of other conditions, employment and employment law were raised a great deal by the public, although we did not address those issues in the Bill because of the complexity that they would bring. Will the guidance given by the Secretary of State include employment issues, so that those issues can be addressed without requiring further legislation?

[Gillian Keegan]

First, I will deal with rare genetic disorders other than Down syndrome. We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance. I will go on to address employment.

I commit that the Secretary of State will ensure through statutory guidance that the integrated care boards will have a named lead for overseeing the implementation of the guidance issued under the Bill. That named lead will ensure that Down syndrome statutory guidance is implemented and considered throughout the commissioning decisions of an integrated care board. That will play an important role in ensuring that there is accountability for improvements at the local level and that the intentions behind the Bill are fully raised across Government.

--- 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.

[Dr Fox]

On a point of order, Ms Elliott. To end our proceedings, I thank you for chairing the Committee, the Clerks for all the work they have done behind the scenes, the Hansard officials, the departmental officials, the Minister and all our own parliamentary teams, who have done a great deal of work. We may be the ones who get the front row seats, but we would not be here without those in our teams, who do all the work on our behalf. I thank all of them on behalf of the Committee for getting us to where we are today.

Bill, as amended, to be reported.