Down Syndrome Bill

Craig Williams Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Dr Fox]

Indeed. I would not even say it is the end of the beginning. It is on the way to being the end of the beginning, but this will be a perpetual battle. So long as medical science is able to make advances in genetics and immunology, this process will continue into the future and we will need to look at it. It is worth pointing out, to answer the hon. Lady’s question more directly, that we considered this in Committee. The Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), made it clear that in the guidance that will be issued, which I will come to in a moment, it is entirely possible to deal with the effects of other conditions that may have the same effects as those emanating from Down syndrome. In a way, yes, we are starting the process, and the way in which we change the Bill is absolutely key to that.

On Second Reading, I think it is fair to say, because we can be a little self-critical, that this was a well-meaning Bill that went as far as we could. However, I made it clear that one big issue was missing—the enforcement of rights. It is all very well to make available new provisions and rights in law, but if an individual or parent does not have the ability to enforce those rights, if there are no mechanisms or levels to pull to enable them to get the full benefit of what the legislation supposedly gives them, ultimately we are failing to achieve what we want. We discussed two major issues. I purposely left them out of the Bill on Second Reading because we were not ready. There is nothing worse than poorly-thought-out legislation that we have to come back and amend. It is far better to think the process through, get agreement on both sides of the House and with the Government, and then proceed on the basis of unanimity, as happened in Committee.

The changes were essentially twofold. The first was getting agreement from Ministers that they would issue guidance to local health and education bodies and planning authorities to ensure that healthcare, education and long-term care issues would be properly taken into account. That was a major step forward. Again, it answers the question of how we can broaden the effects of the Bill, even with measures that are not in the Bill. That means looking at other conditions that will face the same problems as created by Down’s syndrome. However, that agreement created its own parliamentary problem for us, because as those who listen to debates in the other place will know, guidance issued by Ministers that is not laid before Parliament creates a potential democratic deficit. That is why I think it was the first major step forward for the Bill in Committee when the Government agreed not simply that the Minister would issue guidance, or that that guidance could apply directly to the various bodies concerned—another important step in itself—but that that guidance would be laid before Parliament.

Up to that point, I had considered whether we needed to put a sunset clause in the Bill, to have it completely reviewed to see whether it worked in practice. The fact that the guidance will be laid before Parliament enables us to look in real time at what is happening, including parliamentary Committees looking at how the guidance actually works. That is a huge step forward. I think it is actually precedent-setting and turns this from a nice Bill into a cutting-edge and meaningful Bill. That is a huge achievement and one thing for which the Bill will be most remembered.

[Craig Williams (Montgomeryshire) (Con)]

I pay huge tribute to my right hon. Friend for bringing forward the Bill and the manner in which he has done so. On the territorial extent of the guidance, as a Welsh Member of Parliament I pay tribute to him, but he will know far better than I, given his length of service in this place, that the Bill’s territorial extent is England only. The Minister has alluded to working with devolved counterparts, but may I ask him to use his passion and experience to urge the devolved Administrations to follow suit?

[Dr Fox]

I thank my hon. Friend for that question. It will not surprise him to hear that, as a committed Unionist, I will come back to that. We need to consider the quality of life of all citizens in the United Kingdom, not just those for whom we are directly legislating today.

I turn to the second element of precedent-setting changes that we made to the Bill in Committee. As we move to the new integrated care structure in the health service, we will have a named individual on the integrated care boards responsible for the application of this legislation, should it receive Royal Assent. That really matters, because those who have Down syndrome, their parents, their families and communities will know who in the new structure is responsible for ensuring that the guidance issued by Ministers is given effect on the ground. I think that even the direct application of ministerial guidance—as it would have had—and parliamentary scrutiny would not have been not quite enough to guarantee the effect of the Bill’s provisions where it really matters.

That is precedent-setting. I doubt very much whether this will be the only occasion on which my hon. Friend the Minister has to consider representations for named individuals to take responsibility, but I take great pride in the Bill being the first, because I think it is a major step change from what we have had. It will give the new integrated care plans the idea of responsibility for their application to named individuals, which gives us a point of pressure in the system that did not otherwise exist.

Finally, I turn to the Bill’s application to one part of the United Kingdom. At the beginning of the legislative process, we had a choice. We could have set out a United Kingdom Bill and challenged the Governments in Scotland, Wales and Northern Ireland for legislative consent orders. We could have said, “We dare you not to have the same provisions.” However, that would have become a debate about devolution, not Down syndrome, and I passionately wanted the Bill to focus on the needs of those with the condition and not become an argument about Government process or our constitutional relationships.

Having said that, I completely take the view that a person with Down syndrome should not have fewer rights in one part of this United Kingdom than in any other. The Bill is making speedy progress through the House. I hope that it will make speedy progress through the other place and that, hopefully, it can get to Royal Assent before World Down Syndrome Day on 21 March, at which point we would be the only country to have legislated for it. That is important for our concept of global Britain, which cannot be just about trade, defence or economies; it must also be about our values, and I can think of no clearer signal to send than to legislate on this point.

I say to those in charge of the legislative programmes in Wales, Scotland and Northern Ireland that it is unthinkable that people with Down syndrome living in those parts of the United Kingdom should have fewer rights, or rights applied at a later date, than those in England, for whom we are legislating today. When it comes to health, it is the duty of all those who run those devolved parts of the United Kingdom to ensure that everybody in the UK, irrespective of where they live, gets the same access at the same time to the changes to which we are giving effect today.

This Bill began with great intentions, and ends now as a landmark Bill. It recognises that, in the provision of services, whether in health, education or long-term care in this country, Parliament will give not only rights, but applicability and enforceability of those rights in our systems. That is a change in the whole way in which we think about such legislation in this House.

I am very proud to have been the mover of this Bill; as the mover of the Bill, I am also very moved by the support that has come from every party in the House of Commons and from the Government. I thank all my colleagues and, with your indulgence, Madam Deputy Speaker, I may be able to thank some others who have been instrumental in the progress of the Bill a little later.

--- Later in debate ---

[Stuart Anderson (Wolverhampton South West) (Con)]

I thank my right hon. Friend the Member for North Somerset (Dr Fox) not just for bringing forward the Bill but for his work behind the scenes. All too often, we see the work that goes into a speech of three, four or five minutes in the Chamber, but my intake in particular could learn a lot from him and his experience in getting cross-party support for the Bill and having a reasoned debate on such a valuable topic.

It is delightful to see cross-party support in the House for levelling up outcomes for people with disabilities, including those with Down syndrome. As the Member of Parliament for Wolverhampton South West, I am committed to championing health and wellbeing for my constituents. We always see that as doing things such as eating your five a day or making sure that you have a walk, exercise or do different park runs. I took it to the extreme last year—my hon. Friends would not forgive me if I did not mention this—when I ran the world’s toughest mountain race in six days in Wales for two good causes: the Wolves Foundation for communities across all areas of Wolverhampton; and the campaign to prevent veterans’ suicides, which is a subject close to my heart. I ran that with a paralysed foot.

I have previously talked about when I was shot and how I went on to have a military career. I had a physical disability and was told that it would never be possible to do that. At the time, I did not think I would do it, but I did. However, in Wolverhampton and across the country, many groups, communities and people with Down syndrome face unique challenges every day of their lives and they need careful planning.

[Craig Williams]

Before my hon. Friend runs away from the point that I wanted to make, he ran through the most glorious constituency of Montgomeryshire but, as I said earlier to my right hon. Friend the Member for North Somerset (Dr Fox), the Bill sadly does not apply to the great constituencies that he ran through. Will he join me in imploring the devolved Administrations to look to my right hon. Friend as inspiration and introduce similar legislation?

[Stuart Anderson]

I thank my hon. Friend for his intervention. I believe that I ran through his constituency on day 3. In Machynlleth, we encountered our first shops and we were able to get some lollies as we passed through; it is a beautiful area. Yes, that should be considered across the devolved Administrations as well. I would welcome that.

We need to think about the careful planning that allows people to continue to live a normal life, day in, day out. It is not straightforward or easy. A lot of consideration has to be brought in. It is right that the provision is planned according to the individual’s needs. I am glad that a commitment has been made to consult widely on proposed guidance as the Bill is taken forward, ensuring that the voices of those with Down syndrome and their families and carers are heard, and that the guidance is fit for purpose.