Down Syndrome Bill — House of Commons, 2021-11-26
Topic: Health
Liam Fox (Conservative, Centre-right): I completely agree with my hon. Friend, and I will come to the point about early intervention later because it is key, as in so many other things, to good outcomes. The effects of this Bill should be a genuine example of what we talk a lot about these days, which is levelling up. In most parts of the country, our healthcare is good, reflected in improved health outcomes and life expectancy. When it comes to education, especially special needs, every Member of this House of Commons will be aware that it is patchy. We would do well to level up to the level of the best when it comes to special educational needs. However, when it comes to social care, the understanding of the implications of the increased life expectancy has not filtered through to every local authority that needs to make plans for long-term healthcare. I feel this is one of the most vital elements in bringing forward this legislation, because what would be completely unacceptable, a stain on our country and a scandal is to see those whose parents have died being, in future, placed in inappropriate institutions—in elderly care homes or, worse, mental health institutions. That is something that I think would bring shame to our country, as well as an utterly inappropriate lifestyle for those to whom we should be giving the best possible care Our improvements need to be mirrored across all our sectors. This Bill will result in the respective Secretaries of State giving instructions to local health authorities, clinical commissioning groups, local education authorities and local authorities in charge of long-term care to ensure that they make provision for, in the words of the Bill, "persons with Down syndrome". Of course, it would be nonsensical for us to freeze the position in which we find ourselves today, which is why we require flexibility in the Bill. That is why it sets up an advisory committee, which will help the Secretary of State change those instructions as necessary and as conditions, the quality of our medical care and understanding improve over time There is one thing the Bill does not currently deal with, but it will when it comes back in Committee, and that is the issue of redress, for having increased rights is of no use if they cannot be enforced. Of course, the standard reply of what some people who no longer work in Downing Street prefer to call "the blob" is that the redress should be either a judicial review or to bring a civil case in the courts. To families fighting to get provision across medical services, educational services and social care, that is almost an insult We need to find ways of redress that are efficient, quick and cheap if we are to deliver on what I think everyone in this House believes to be the purpose of the Bill itself. I have discussed this extensively with the Government, and we were not quite able to bring in the provisions I wanted in the form that the Bill would require, but the Government, as I am sure the Minister will confirm later, intend to bring this forward as an amendment in Committee. It is far better that we get the right provisions in the Bill than that we go off half-cock now and have to amend them later. Let us get it right, not least so that those in the other place know that we have full agreement across the Bill in the House of Commons There are those who seem to imply that those with Down’s syndrome can just be grouped with various disability groups for whom legal provision already exists. I have to say that, in the last few days, I have become somewhat surprised at where some of these voices have come from. Let me be very clear—this goes to the point my hon. Friend made a few moments ago—and this is what Tommy Jessop’s mum told me this morning: "People with DS are identifiable with identifiable characteristics but many are not getting the help they need. There are specific medical needs that need to be addressed. There are specific identifiable ways of helping them to learn. And there are identifiable strategies for helping them physically. Eg developing muscle tone or specific speech therapies" That was the very point about early intervention that my hon. Friend made in her intervention Our improvements in care have brought huge benefits, including increased life expectancy, but they also bring new challenges as those with Down’s syndrome increasingly outlive their parents. Without our actions, perfectly preventable human tragedies would occur, and if there is any point in our being in politics surely it is to ensure that such tragedies do not happen.