World Down Syndrome Day

Chris Stephens Excerpts

Thursday 23rd March 2023 Commons Chamber

[Dr Fox]

I am grateful to the hon. Lady for making that point, because we can pass as much legislation as we like, but if the professionals at the sharp end, who are required to implement any changes or guidance, do not have sufficient understanding of the problem they are facing, we are all at a deficit in our response. I think the issue of professional education is so important not just for teachers, for whom it obviously is important, but for the medical profession, the social work profession and those involved in local government, who will deal with some of those issues relating to care, particularly long-term care. I think it is an extremely important issue.

I was able in the UN debate to show how the United Kingdom has a very proud record in legislation in this general area. The UK has a long-standing tradition of ensuring that the rights and liberties of disabled people are protected. We ratified the UN convention on the rights of persons with disabilities in 2019. Internationally, our disability inclusion and rights strategy sets out the ambition to embed disability inclusion across all our diplomacy, policy and programmes. The Equality Act 2010 legally protects people in England, Wales and Scotland from discrimination in the workplace and in wider society. We also have the Mental Capacity Act 2005, covering England and Wales, to ensure that every attempt is made to support someone to make decisions about their own lives, and that of course includes people with Down syndrome.

I would like, if I may, to say a word about the Down Syndrome Act and remind us why we passed this legislation. Primarily, it was about empowerment. The Act legislates not for Down syndrome, but for people with Down syndrome. It requires the Government in England to produce Down syndrome-specific guidance relating to health, social care, education and housing services. I hope that Members from Scottish and Welsh constituencies may be able to update the House on how this legislation is being adapted and implemented there. I will come back, if I may, to the point about its being Down syndrome- specific, because I have some concerns that that may be being lost in some parts of the consultation process.

It is important to remind ourselves about the legislation. Under the Act, public authorities such as hospitals, schools or social care providers cannot ignore the guidance when commissioning and delivering services. The guidance must set out what the unique needs of people with Down syndrome are, and what public authorities should be doing to ensure that the support needs of people with Down syndrome are met to enable them to live fulfilling lives. I will come back to this element of the guidance, because one of the issues we discussed in Committee—this has been a controversial issue in this House in relation to other legislation—is when does the guidance become instruction. If Ministers are issuing guidance that is in effect instruction, surely that should be laid before the House of Commons so that we can recognise the importance of that and scrutinise how ministerial authority is being used.

I think that for too long there have been too few levers available for individuals, families and their advocates, including us as Members of Parliament when it comes to getting fair treatment for our constituents with Down syndrome. After all, what is the point of rights in legislation if we cannot enforce them and if there is no mechanism to do so? That was one of the key elements we discussed during the passage of the legislation, and it led to two very important and, I think, innovative changes: the first is on parliamentary scrutiny, and the second is on individual empowerment.

One of the problems we have faced before is that, when Ministers issue guidance, there is very little ability for parliamentary Select Committees to take direct oversight of it. One of the principles we established—and I am very grateful to my right hon. Friend the Member for Chichester (Gillian Keegan), who is now the Secretary of State for Education, for her support in establishing this principle—is that if the guidance is in fact instruction, the guidance would be laid before Parliament, which of course means that the Education Committee, the Health and Social Care Committee and local government can all look at it in real time.

One of the things we considered was whether we would have to put a sunset clause on this legislation to enable Parliament to look at it again. The mechanism that we decided on—I think rightly—in this House and in the other place was that, in publishing the guidance, we would have real-time oversight, because when our constituents bring problems to us, we are all able to write to the Chair of whatever Committee it is and ask them to look into that particular aspect of how the Down Syndrome Act is functioning. That gives us, as Members of Parliament, a lever that we did not have before when we simply wrote a letter to a Minister and hoped for the best, which is not sufficient to implement the rights of our constituents in the way that I think we envisaged during the passage of the Act.

[Chris Stephens (Glasgow South West) (SNP)]

This will be very important for people in the Down syndrome community who believe they are being diagnostically overshadowed and that things are being missed. Does the right hon. Gentleman agree with me that that is particularly important when enforcing someone’s rights in relation to healthcare?

[Dr Fox]

It is. Diagnostic overshadowing is very important, in that we should not miss things in people with Down syndrome because we are looking the other way, or we are distracted by the diagnosis and not looking sufficiently at the person. Greater professional education—and this goes back to the point made by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier)—is a key part of the empowerment of the individuals for whom this legislation was produced. I know from my own medical education that there was not a great deal of it that involved us learning about specific needs. For the medical profession, the sort of overlooking that the hon. Gentleman describes is a real risk if the thought is not there that someone may see a different position from the one they should because of the very overshadowing that he describes. I imagine he may enlighten us further on that particular issue, and I hope he will because it is a real issue that needs to be examined fully.

The second important change in our legislation was that we included in it the need for a named individual on the new integrated care boards to be responsible for the implementation of the Down Syndrome Act. A very senior Member of this House said to me during the passage of the Bill in Committee, “Do the Government realise the floodgates that they may be opening in agreeing to this?” I said that I was not sure, but that it really was not my problem. I think this is a tremendous innovation, because all too often we have an anonymised bureaucracy when it comes to the delivery of the things that Parliament intends. We can vote for things in this House and, with taxpayers’ money, we can fund them, but if we do not know who is responsible for the delivery in our own locality, it becomes difficult for us as Members of Parliament to know who to get in touch with.

The de-anonymisation of the civil service, which is something I have long and profoundly believed in doing, received its first outing in that Act. It may be a by-product —in my mind it was not that; it was an essential principle —but none the less it is extremely important. With this new system, for the first time, individuals, families and advocates for people with Down syndrome will know who is responsible. For once, there will be a named person in our system who people can turn to for either assistance or redress, depending on the nature of the problem. I hope we will extend that principle further in the provision of public services. For too long in this country, taxpayers have provided the funding, but they do not have accountability in the delivery mechanisms of those public services. It is, in many ways, a quiet revolution that I hope this Act will usher in. It is a principle and a precedent that has been much understated in the interpretation of what Parliament has done.

The guidance itself has been subject to long and detailed consultation, and I look forward to the draft publication in the summer. The Government face a number of challenges with this, which are worthy of debate. One question that was frequently raised in both Committee and the House was, “What about those with problems similar to those with Down syndrome; are we effectively creating a ladder of preferment in the provisions of public services?” Quite wisely, the Minister at the time said that it would be reasonable to consider those with overlapping problems at the same time as we were looking at the implementation of the Act. I say gently, however, that while that is absolutely right, we must also remember that the Act is specific to Down syndrome. When it comes to Down syndrome there is no doubt about the diagnosis, and unlike many other conditions where there are overlapping symptoms and signs to consider, there is no doubt about it. Down syndrome is not a subset of other conditions or of learning disabilities, although on a Venn diagram there will be a huge overlap; it is a specific condition and we must regard it as such.

I would like the Government to consider some specific areas, one of which relates to education rather than health. This is a formal request to Ministers to add Down syndrome as a separate category to the annual school census. Why? Because there is currently no Down syndrome-specific school data available, including numbers, location, or educational settings, because individuals with Down syndrome are included only in the general special educational needs and disability school numbers. If we are to have specific legislation, it makes sense to have specific data with which to interpret the success of its implementation. Children with Down syndrome in the education system will have specific speech and language issues, significant fine and gross motor delay, cognitive delay, hearing loss, visual issues—we detailed that on Second Reading—social and emotional needs, and specific and unique learning profiles associated with Down syndrome. Some of those conditions will be shared with other syndromes and medical conditions, but many will be specific to Down syndrome. If we are not to get the overshadowing problem, we must be clear about what we need to know about this.

In New York I was able to set out the sort of cases and advances that we have made in this country by being able to utilise a range of tools that enable people with Down syndrome to make more decisions for themselves. As we have a better understanding, for example among social workers and community medical staff, we are increasingly able to deploy those tools to ensure that those who have a voice—a voice that would not necessarily traditionally be recognised in our system—are able to make more decisions for themselves. That was at the heart of what the UN 12th World Down Syndrome Day meant.

I do not wish to speak any longer than necessary and take up colleagues’ valuable time, so I will end with this quote from Heidi Carter, who I have come to know increasingly well. She is a valiant campaigner for Down syndrome rights, and she states:

“I have shown everyone that Down syndrome is not something to be scared of and that people with Down syndrome live happy, amazing, fulfilled and independent lives!”

Congratulations to her and her husband on their marriage. I wish them well. She said:

“We are not going to give up. I think that all human life is valuable and should be treated with respect however many chromosomes we have!”

I do not believe there is a single one of us in this House who would not agree with that sentiment.

[Chris Stephens (Glasgow South West) (SNP)]

I congratulate the right hon. Member for North Somerset (Dr Fox) on securing this debate, and on the passage of his Act. I enjoyed his contribution this afternoon, advocating for individuals in the Down syndrome community. I assure him that I was at the parliamentary event on Wednesday, and there were people from Scotland down in the Lobby discussing some of those issues. It was a privilege to be there. It is also a privilege to be an elected representative, and one of the privileges that come with that is that we meet those we represent who speak truth to power. On Saturday, my constituent, Danielle Urie, came to see me at my Ibrox surgery. She asked me to participate in this debate, which is why I am here this afternoon. I asked Danielle to write to me about some of the things she wanted to say, and after the exchange I had with the right hon. Gentleman about diagnostic overshadowing, I am afraid that, sadly, there is an example of that coming up.

Danielle is currently going through the complaints procedure with the health service in Scotland to discuss some of this. I asked her, and her son Steven, to go through their experiences, and I will read what Danielle sent to me last night:

“My name is Danielle Urie. If my son Steven could speak, I’m sure this is what he would say. ‘My name is Steven I am 11 years old. From 2019 to 2021 I was diagnostically overshadowed by doctors which resulted to damage in my body that can never be reversed, while sitting in chronic pain and bleeding for two years. I am now left with a permanent stoma and my large bowel being completely removed. During this time I had been treated with no respect, and left with no dignity.’ If Steven was a typical child who could voice for himself I don’t think any of this would have happened. I want you to all know the catastrophic consequences that can happen with diagnostic overshadowing, because it’s real and it happens more than you all think. To have no control on what happens with your child’s healthcare is terrifying . I don’t want my child or any child in fact to be added to the statistics of people with Down’s syndrome dying as a result of being diagnostically overshadowed.”

I want to thank Danielle for having the bravery to write to a Member of Parliament to share that particular experience.

The right hon. Gentleman invited us to talk about what is happening in other devolved nations, and I have some constructive criticisms about what is happening in Scotland. I do not think that everything is wrong with what the Scottish Government are doing, but I have some comments to make. The Scottish Government’s position is that they take a wider view and are committed to introducing the learning disability, autism and neurodiversity Bill as part of their programme for government. There are opportunities there. In delivering the Bill, the Scottish Government want to improve opportunities, outcomes and support for people with Down’s syndrome.

There will be a consultation on the Bill later this year. I will certainly be assisting Danielle, and any others, as a part of that. It will provide an opportunity for people to view the policy options that could be included in the draft Bill, including whether it should establish a commissioner. As part of their scoping work, the Scottish Government ran events with a wide range of Scotland’s disabled people-led organisations and national charities. The Scottish Government are working towards a human rights-based approach to ensure the Bill is fully co-designed with people who have lived experiences. It is very important, when shaping legislation, that people with those lived experiences are involved from the outset.

I would like to see the words “Down’s syndrome” included in the title of the Bill. I think that would be welcomed by those who came down from Scotland to the event in Parliament on Tuesday. Why do I think that is important? People with Down’s syndrome are more likely to be born with a heart condition and more likely to get leukaemia. People in the Down’s syndrome community are more prone to infections and thyroid problems, and more susceptible to eye and hearing problems. We want to ensure that those with Down’s syndrome get extra health checks, for example, and have access to speech therapy. It is very important that people with Down’s syndrome have those opportunities. Those are some of the reasons why I want the Down’s syndrome community in Scotland have the words “Down’s syndrome” in the title of the Bill. I will be working with Danielle and others to ensure that that is the case.