Down Syndrome Bill

Ruth Jones Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Dr Fox]

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.

[Ruth Jones (Newport West) (Lab)]

The right hon. Gentleman is making a powerful speech and I whole- heartedly support his Bill. As a paediatric physiotherapist in a former life I spent a lot of time working with brilliant groups, and my time with the self-help group for the Down’s syndrome children and their parents was among the best and happiest; it was really useful and hopefully the parents got the support they needed because it was all-encompassing and all-groundbreaking—social care, health, speech and language, audiology. Does the right hon. Gentleman agree this is the way we should go forward and that it is very important that these families get the support they need from the very beginning?

[Dr Fox]

The hon. Lady makes a powerful point: there must be a holistic approach because although the delivery of government exists in the silos of health and education and social care, the needs of patients do not. The complex, interactive needs of patients must be dealt with in exactly the holistic way she describes, and hopefully this Bill will ensure that that integration occurs to a greater degree in the future than, sadly, it did in the past.

The hon. Lady also makes the good point that today we are seeing an example of Parliament at its best: united across the traditional party divides to deal with an issue we have all experienced and where we all know things have to improve. I hope that while this Bill, to my regret, applies only to England, we will soon find ways to make its provisions available to all parts of the United Kingdom.

--- Later in debate ---

[Sir Charles Walker (Broxbourne) (Con)]

Thank you, Mr Speaker, for making special provision for my guest today, who is up in the Public Gallery. Corina Gander and I met at 7.15 am in a very cold car park in Cuffley with our walking shoes. As you are aware, Mr Speaker, there are problems with transport today, so we arrived in Moorgate and then spent an hour in the rain getting here, but it is an important occasion and we both wanted to be here. Corina is the mother of Daisy. Daisy has Down’s syndrome, and she is going to be watching this with her mum later tonight on Parliament TV, as will Daisy’s four sisters and her proud grandparents.

I first met Corina nearly two years ago. She came to tell me, in no uncertain terms, that what was happening in Hertfordshire was not good enough; there was not enough support for her and her daughter. I did not know a huge amount about Down’s syndrome then—I know a lot more now—but I said to her, “So what are the problems?” My right hon. Friend the Member for North Somerset (Dr Fox) brilliantly identified them in his introductory speech.

“Fundamentally,” Corina said, “the illness is just not taken seriously. When my daughter was born, she had terrible breathing difficulties. I kept saying to the doctors, ‘My daughter is struggling with her breathing,’ and they said, ‘Well what do you expect, Corina? She has Down’s syndrome.’” Then, one day, a health visitor came who had a relationship with the family, and she said to Corina, a worried mother, “What would you do, Corina, if this was one of your four other daughters?” Corina said to the health visitor, “I’d take her to A&E.” The health visitor said, “Well you know what to do, then, don’t you? I’ll hold the baby; you get your coat. We’re going to A&E.” That child, Daisy, was on life support for a month and then spent another three months in hospital. That is the stigma that my right hon. Friend is trying to address today.

Beyond stigma, my right hon. Friend identified other areas that need to be addressed—fragmented services, for example. At the moment, services are almost always fragmented. A young child will need physiotherapy, which will be in one place. Occupational therapy will be in another place. Speech and language will be elsewhere. Community paediatricians will be in another place. Then there are opticians, audiology and so on. It can be exhausting to navigate specialist services, but particularly so when one has a child who is very demanding of one’s time and other family commitments. We need to make it easier for parents to get the support that they need and, most importantly, their children need.

[Ruth Jones]

The hon. Gentleman is making a powerful speech in support of the Bill. He highlights a very important point about the need for integrated children’s services. At Serennu children’s centre in my constituency, all the services are under one roof, including the voluntary sector, and it is a comfortable place for families to go to. Children are not scared and families are not anxious. Does he agree that that is the best way forward?