World Down Syndrome Day

Liam Fox Excerpts

Thursday 23rd March 2023 Commons Chamber

[Dr Liam Fox (North Somerset) (Con)]

I beg to move,

That this House has considered World Down Syndrome Day.

I am grateful to have secured this debate, and I thank colleagues from all parties for their support in being able to do so. Two days ago I was honoured and privileged to be able to speak on behalf of the United Kingdom at the United Nations in New York on the 12th World Down Syndrome Day. It was an acknowledgement of the United Kingdom’s role as the country that has been the first to legislate in this area, of which we should be extremely proud. It was important that we took that opportunity to make the case.

When we passed the Down Syndrome Act 2022, it was a recognition of the strength of our electoral system. With the first-past-the-post system, whatever its handicaps, we are real constituency MPs with real constituents, and the fact that we are exposed to the complex problems they have enables us to be responsive to their needs and them to know who to go to when they need help with the problems they face. I also think that passing this legislation was a recognition of something we do not always do as politicians. One of the intrinsic problems in a democratic system is that we tend to get more credit for dealing with a crisis than preventing one. One of the key elements of this legislation is that it shows that Parliament can anticipate problems before they become a serious crisis-ridden issue. I will come back to that, if I may.

I thank all the charities associated with Down syndrome for the work they have done since the passage of the legislation, and I thank all those voluntary groups who helped with the consultation. I particularly thank the National Down Syndrome Policy Group, not least for its support for our function in Parliament, which I was unable to attend due to being in New York. I thank my hon. Friend the Member for Meon Valley (Mrs Drummond) who stood in so expertly to chair such a successful event.

The theme for World Down Syndrome Day this year was “With Us Not For Us”, and thinking about legal capacity and supported decision making is incredibly important.

We all expect and take for granted that we can make decisions about our lives—from where we live and whom we live with to what we study and where we work—and because we take these choices for granted, we must not forget that other people do not necessarily have the ability to do so. It is therefore absolutely right that people with Down syndrome are involved in all the decisions that affect their lives.

As I said when I was in New York, when a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population and so, inevitably, do their families, who will face different challenges. Those challenges come, as we all know, in the form of medical problems, educational needs and long-term care challenges. The consequential change in life expectancy was one of the main reasons that we passed the legislation in the first place. I believe that every individual with Down syndrome has the same right to life, quality of life, dignity and independence that the rest of the population take for granted.

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

I congratulate the right hon. Member on today’s Backbench Business debate and the Act that he got through Parliament. Whether a child attends a special educational needs and disabilities-specific school or a mainstream school with SEND support is not dependent on any particular condition or diagnosis, but dependent on where the child’s needs can be best met. Children with Down syndrome can thrive in mainstream education, so does the right hon. Member agree that increasing awareness of the condition among education professionals, parents and all children is important in ensuring that children with Down syndrome have access to the right learning environment for them?

[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.

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[Marion Fellows (Motherwell and Wishaw) (SNP)]

May I congratulate the right hon. Member for North Somerset (Dr Fox)? Further into my speech I may disagree with him slightly—it will be a gentle disagreement—but I totally acknowledge his knowledge and his passion for people with Down’s syndrome. Unfortunately I was not able to make the reception on Wednesday, but I did manage to get my picture taken with the right hon. Member and tweet it out on World Down Syndrome Day; I think many of our constituents might have been quite surprised to see that.

It is always a pleasure to speak in these Thursday afternoon debates, because they are generally consensual and we really learn a lot. As the SNP spokesperson on disabilities I was not entirely sure whether I would be the right person to sum up in this debate, but I think I probably am, because of the passion that the people around me are exhibiting this afternoon. I will probably throw away my prepared speech now and just crib bits and pieces.

It is always a pleasure to follow Members such as my hon. Friend the Member for Glasgow South West (Chris Stephens). Everyone can be assured that he will assist his constituents to push the Scottish Government with their new Bill, because he is passionate about helping his constituents. The hon. Member for Stoke-on-Trent Central (Jo Gideon) spoke about her personal experience and about changing attitudes to Down’s syndrome and life expectancy. As one of the older people speaking today, I can vouch for that: when I was younger it was very difficult to see anyone with Down’s syndrome as we went about our daily living, but now things are very different right across the United Kingdom.

The hon. Member for Ashfield (Lee Anderson) spoke about real people; there cannot be many of us who have not met a real person with Down’s syndrome. The hon. Member for Southend West (Anna Firth) talked about the Music Man project and about the theme for this year’s Down Syndrome Day, “With Us Not For Us”—a motto and an expectation that we should all think about when we are dealing with people with disabilities. The hon. Member for Hendon (Dr Offord) paid tribute to those who care. I am pretty sure that he, too, cares about lots of things, but I understand his reluctance to put himself out there as a carer.

The right hon. Member for North Somerset wanted to know more about what is going on in other areas. Before I get on to that issue, I might just get over the point on which we might differ slightly. Like other Members, I get briefings from lots of organisations for many debates in this House. Genetic Alliance has written to me with its concerns about the guidance on the right hon. Member’s Act. It is worth just mentioning those concerns, which touch on the point that when Parliament passes a Bill there are often consequences that we do not see and a debate always opens up about what has not been included or what people think might have been included.

Given that people with Down’s syndrome form friendships with people with other genetic conditions and meet them regularly, as they are accessing similar services, Genetic Alliance has concerns that perhaps more thought should be given to guidance for those with other conditions. However, I absolutely take on board what the right hon. Member and my hon. Friend the Member for Glasgow South West have said.

[Dr Fox]

I just want to clarify that the point of the Down Syndrome Act is not to exclude other conditions or other genetic conditions. It was specifically discussed on Second Reading and in Committee that where there is overlap, of course it makes sense to have common provision. However, Down syndrome is different: there is a bigger, defined population who have not just learning difficulty issues, but a whole range of very specific medical conditions that require specific remedies. As has regularly been pointed out, the life expectancy for someone with Down syndrome was 13 years when I was born, whereas it is now in the 60s. That is why it is important that we establish a beachhead for such conditions. Actually, I do not think we are in any disagreement whatever.

[Marion Fellows]

I am very relieved to hear that from the right hon. Gentleman, but I felt obliged to speak about the issue, because there are concerns. I would like the Minister to take on board those concerns from Genetic Alliance, because no one ever wants to pass a Bill that is seen as excluding or not actually helping other people—that is the main point of the briefing that I received today. As I say, I am very relieved not to be in dispute with the right hon. Member.

I want to talk a wee bit about the Scottish Government’s position. As my hon. Friend the Member for Glasgow South West said, they are taking a wider view of Down’s syndrome in the Bill that they want to bring forward. One of the main differences in how the Scottish Government propose legislation is the way they look at the issues and consult very widely—there are many groups that they regularly consult on disabilities. They always use lived experience, which I think is the most important thing for people to take forward.

The Scottish Government have also looked at a human rights-based approach. That ties in very well with this year’s World Down Syndrome Day theme, “With Us Not For Us”, because we need to look at human rights in their entirety, especially for people with Down’s syndrome and for people with conditions that are different but that have similar difficulties. That is why the Scottish Government have committed to incorporating in Scots law the UN convention on the rights of persons with disabilities—always within their legislative competence, hopefully. I think this Government should also think about including that in Bills. I think we are going to have difficulties with human rights discussions, shall I say, in this Parliament going forward; I hope we do not, but I think we all have to realise that everyone has human rights and they have to be adhered to. We should not, in any size, shape or form, be looking to remove any of them from any group of people at all.

As has been said today, it is really important to remove as many barriers as we can for everyone, and especially for those who have Down’s syndrome. It is really important that we look at what people can do, not at what they are not able to do—or not able to do yet. It is refreshing, and important, that people with Down’s syndrome are involved in mainstream education. When I was a further education lecturer, I was involved with a college with many courses for young people who had left full-time education to continue learning. On that subject, there is a wonderful café in my constituency called Windmills. The preparations for it were first made in 2006 at a local school, Firpark high school. It has done great work over the years, and continues to do great work, in training young people with learning disabilities, including Down’s syndrome, and teaching them how to gain qualifications so that they can work in other areas, but especially in the café.

Let me say in conclusion—because I am aware that I may be overrunning—that I find taking part in debates such as this interesting, educational and informative. I congratulate the right hon. Member for North Somerset on all that he does, and I am sure many people have benefited, and will benefit, from his Act.

[Liz Kendall (Leicester West) (Lab)]

I echo other Members in congratulating the right hon. Member for North Somerset (Dr Fox) on securing this important debate. We all know what a passionate and—most importantly—effective campaigner he has been in supporting people with Down syndrome and their families. His Down Syndrome Act, which Opposition Members were proud to support, represents an important opportunity for us to make progress on delivering the support that people with Down syndrome deserve, so that they can lead as full and equal a life as everyone else.

Let me say as an aside that I think what the right hon. Gentleman is trying to do has important implications for wider public sector reform. There are many issues and problems that people have talked about for years; the question is, how do we make change? The right hon. Gentleman’s mechanism in this instance is to use a specific Act providing for named individuals who are held accountable, and for guidance that actually secures change. However, there are other methods of securing changes in public services—for instance, through legal rights—and I am a strong champion of direct payments and personal budgets, which give people and their families the power to change those services. We need to focus on making a difference and putting the users of services and their families at the heart of the system, making them equal partners in care. We will never get healthcare, education and work support right unless we do it in partnership with people.

I am a long-standing champion of the vision pioneered by the group Social Care Future, which consists of people who use services and their families: that we all want to live in the place we call home with the people and things we love, in communities where we look out for one another and where we can contribute, doing the things that matter the most to us—not what somebody else tells us we want to do or should do, but what we ourselves want to do. That is the vision that Opposition Members are championing. In the 21st century, and in what, despite all our problems, is still one of the richest countries in the world, it should not be seen as extraordinary, but the truth is, I am afraid, that for too many of the 47,000 people in the UK living with Down syndrome, it remains far from reality.

Members have rightly spoken of the progress that has been made, but I think it is also important to use this debate to demonstrate how much further there is to go. The first issue I want to raise is that of health and health inequalities, to which many Members have referred. We know that people with Down syndrome are more likely to experience problems with their hearts, bowels, hearing and vision, and have an increased risk of infections. I think it disgraceful that so often the outcomes are so poor for people with Down syndrome because of what is known as diagnostic overshadowing, when symptoms are ignored and put down to Down syndrome rather than being diagnosed properly and addressed.

There are two issues on which I think we should focus. The first is the need to ensure that children with Down syndrome have the regular check-ups they need with paediatricians and GPs. We know that too many families find those services too hard to access, and the current number of vacancies in the NHS—133,000—as well as all the other problems that people are experiencing when trying to see GPs and other doctors are having an impact on that. When she responds to the debate, will the Minister tell us when we will finally see the Government’s workforce plan for the NHS? May I also cheekily ask her once again whether she will adopt Labour’s plan to bring about the biggest expansion of the NHS workforce in its history, which we would pay for by scrapping the non-dom tax status? Members will understand that I want to put forward practical solutions today and to be realistic about the challenges, and that is what I intend to do.

[Dr Fox]

Does the hon. Lady accept that it is a question of not just the size of the workforce but their understanding of the problems? If in health, as in education and social care, the professionals are not aware of the difficulties faced by the population with Down syndrome, no number of extra professionals or services will make a real difference.

[Liz Kendall]

The right hon. Gentleman must have read the next line in my speech. Of course, it is not only an issue of staff shortages and vacancies. I think that the real issue, which the right hon. Gentleman mentioned earlier, is training. If people are not trained to understand an issue and to understand its manifestations, they will not be able to put it right. In some other areas, I have seen medical schools and universities pioneering new forms of training, in which those who have a condition and their families become part of the training module to explain what the implications are. I hope that the Minister will tell us what action the Government are taking in this regard, and whether the guidance that will be issued will involve changes within medical schools or for nurses and other healthcare professionals.

The second area in which progress is needed is social care. It is, I believe, the biggest area in which the right support for people with Down syndrome is too often lacking. Whatever Conservative Members may say, I think it is important to understand the context in which the Down Syndrome Act will be working, and to take into account the difficult situation relating to social care. Just last week, research from the learning disability charity HfT revealed that nearly half the social care providers in England have been forced to close part of their organisations or hand back contracts to councils as a result of cost pressures in the last year. More than half a million people are awaiting a social care assessment, a review, or the start of a service or direct payment, and a survey conducted by the Down’s Syndrome Association found that 43% of family carers said their adult child was in need of an assessment, with some waiting as long as two years for that basic service.

What all this means, of course, is that families tend to be left to pick up the slack, often having to leave their own jobs or reduce their hours because they cannot obtain the help that they need to look after their loved ones. The fact that there are 165,000 vacancies in the social care workforce is having an impact on the support that is available to families with Down syndrome. We need to address both the issue of the care workforce and wider reforms.

Last week, the Health Service Journal reported that there are due to be cuts in the money announced for social care reform in the 2021 White Paper. A sum of £500 million was set aside to improve the training and career progression of the care workforce, but the Health Service Journal said that that is going to be cut by half. It also said that the £300 million to better integrate housing, health and care is set to be cut, with cuts to the budgets for unpaid carers and the use of technology.

This is really important, because unless we join up services and support, people with Down syndrome will not be able to live the lives they choose. The issue of housing is critical. Just 28% of people with learning disabilities live in supported housing, yet we know that 70% of people with a learning disability want to change their current housing arrangements to give them greater independence. Will the Minister confirm whether those reports are true? Are the Government going to cut £250 million for improving the training of the social care workforce and £300 million from the budget to better integrate health, care and housing? [Interruption.] It is not a disrespectful question; it is a question that has a direct impact on the lives—

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[Dr Fox]

With the leave of the House, may I thank all colleagues who have taken part in this debate? As the Minister just said, this is the House at its best, which almost certainly means, sadly, the media coverage at its least. As they say, “If you want a secret kept, say it in Parliament, outside Prime Minister’s questions.”

A couple of points are worth reiterating. There are those concerned about people with similar conditions to Down syndrome being left aside, but I do not believe that to be true, because of the measures that were considered and the commitments given in Committee by the Government. Although, again, it is worth pointing out that people with Down syndrome share a number of characteristics with other groups, they are, none the less, a discrete population. I wish the hon. Member for Glasgow South West (Chris Stephens) well in his attempts to get Down syndrome included in the Scottish Government legislation, because there is a problem of genuinely unintended consequences. Leaving it out could result in legislative overshadowing and we may unintentionally leave the Down syndrome groups isolated in their legal rights.

One thing that has come out loud and clear from this debate is the need for professional education, whether in health, education or social care. I worry about not only diagnostic overshadowing but social overshadowing, whereby the need for people to live, earn and be independent is hidden by a stigma, which is still all too prevalent and needs to be removed. We in the UK have taken a great lead on this issue, as was reflected at the United Nations on Tuesday. We should relish this challenge as a country. We talk about global Britain in a whole range of areas, including diplomacy and security, but should not one of the great challenges for global Britain be our setting an example on social care that the rest of the world wants to follow? That would be something to achieve.

Question put and agreed to.

Resolved,

That this House has considered World Down Syndrome Day.