Down Syndrome Bill

Robert Goodwill Excerpts

Committee stage
Wednesday 26th January 2022 Public Bill Committees

I set out the rest of the arguments on Second Reading and I do not intend to repeat them today, but those are the main points that take the Bill into a slightly different and more important realm. The Committee has worked together and there has been Government and cross-party support, and that has enabled us to bring these changes forward in a meaningful way. Getting the support almost certainly means that the Bill will progress to its remaining stages, potentially on 4 February, and get out of the House of Commons quickly. That is a good example—I can think of no better time than this to say it—of our ability to manage our affairs in Parliament without daily psychodrama and of the fact that when we want things to be done in a reasonable way, it is entirely possible for us to do that. That is what our constituents and those who will benefit from the Bill expect.

[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.

--- Later in debate ---

[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.

[Sir Robert Goodwill]

Does the Minister accept that while many Down syndrome sufferers can get into the workplace and make a real contribution, there are others who are very profoundly affected—who cannot communicate and have great behavioural problems? I know that from experience with my wife’s family. These are not the Down syndrome sufferers who we see in the media; these are people who often have to be kept in a controlled environment with 24-hour care.