Liam Fox
Main Page: Liam Fox (Conservative - North Somerset)Friday 26th November 2021
(2 years, 5 months ago)
Commons ChamberRead Full debate Down Syndrome Act 2022 View all Down Syndrome Act 2022 Debates Read Hansard Text
Dr Liam Fox (North Somerset) (Con)
I beg to move, That the Bill be now read a Second time.
Before I turn to the purpose and contents of this Bill, let me begin with some thanks. First, I thank those who helped us out at our photoshoot the other day: Fionn, Max and Freddie. I am sure that all those Members who were there would like to add their appreciation. We are very sorry that it took so long, but we are very grateful to them for their patience and their fortitude. I also thank the 107 MPs who turned up to offer their support on that occasion. I thank the role models for those with Down’s syndrome, particularly Tommy Jessop and Bethany Asher, who have blazed a trail for others to follow.
I thank the co-sponsors of the Bill, my hon. Friend the Member for Bolton North East (Mark Logan), the hon. Member for Bristol North West (Darren Jones), my hon. Friends the Members for Bury North (James Daly) and for Carshalton and Wallington (Elliot Colburn), the hon. Member for Ceredigion (Ben Lake), my hon. Friend the Member for Don Valley (Nick Fletcher), the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), my hon. Friend the Member for Meon Valley (Mrs Drummond) and the hon. Members for North Antrim (Ian Paisley) and for Oxford West and Abingdon (Layla Moran). It is quite a roll of honour.
I also thank the organisations that have supported us, in particular Edel Harris, the chief executive of Mencap, Ken and Rachael Ross of the National Down Syndrome Policy Group and Portsmouth Down Syndrome Association, Sue Dennis and Joanna Thorn of Up and Downs Southwest and others including Positive About Down Syndrome, PSDS and Annabel Tall, my constituency assistant, whose son Freddie, who has Down’s syndrome, was the reason we first met when she came to one of my constituency surgeries.
Finally, I thank those who have helped us get the Bill to this point, especially the Minister for Care and Mental Health, my hon. Friend the Member for Chichester (Gillian Keegan), who has gone out of her way in the most exemplary fashion to help us get the Bill to the shape it is in today. I also thank David Nuttall, one of the civil servants in the Department of Health and Social Care, who has been instrumental in putting the Bill together. Civil servants do not always get fulsome praise on the Floor of the House, but let me say on this occasion that it is more than deserved. Finally, I thank David Goss in my own office, whose tireless efforts have helped Members of Parliament and those involved play a full part in where we have got to today. If I have missed anyone else, it is my memory, not my lack of appreciation that is at fault.
The first question that people have tended to ask about this private Member’s Bill is, “Why? Why this issue, and why now?” Let me answer that in three ways. First, there is the challenge faced by those who have Down’s syndrome. 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. Inevitably, their families, too, will face different challenges. They will come in the form of medical problems, educational needs and long-term care challenges.
Let me start with the medical challenges. The medical problems associated with Down’s syndrome can manifest in many ways. Congenital heart defects are often first. Approximately half of all infants born with Down’s syndrome have a heart defect. Down’s syndrome is a major cause of congenital heart disease and the most frequent known cause of atrioventricular septal defects. There is also likely to be: higher incidence of hearing loss and poor vision, with increased incidence of cataracts; orthopaedic problems, including hip dislocations; and, more seriously, leukaemia. Children with Down’s syndrome are at an increased risk of developing any type of acute leukaemia. In particular, they are 150 times more likely to develop acute myeloid leukaemia and around 30 times more likely to develop acute lymphoblastic leukaemia. There is also increased incidence of hyperthyroidism, low thyroid function, obesity and Alzheimer’s disease in later life. People with Down’s syndrome are also more prone to infection and may struggle with the respiratory infections, urinary tract infections and skin infections that the rest of the population will deal with relatively easily.
Next, we come to intellectual development issues, one area where public perception tends to be inaccurate. Although it is true that people with Down’s syndrome usually have some degree of developmental disability, it is often mild to moderate, which means that for many a fulfilled life with meaningful employment and social integration is possible. Lumping every child with Down’s syndrome into the category of “severe learning difficulty” is to fail to understand the reality and complexity of the situation.
Robert Buckland (South Swindon) (Con)
My right hon. Friend has come to a very important part in his speech, because there is a real concern among people with Down’s syndrome and their families that the system or other people ascribe a value to their lives that they have no business in doing. The value of the lives of people with Down’ syndrome is immense, and what we should be doing is making sure that they can access mainstream services just like the rest of us, rather than ascribing some sort of lower value to the quality of their lives.
Mark Pawsey (Rugby) (Con)
I congratulate my right hon. Friend on introducing this Bill and securing Government support for it. He gave a roll call of organisations that support people with Down’s syndrome, many of which are local. I wish to give credit to the great work of New Directions in my constituency and the support it provides to people with Down’s.
Dr Fox
I am grateful to my hon. Friend, who is correct in what he says. I am sure that Members who speak in this debate will wish to highlight charities and other groups in their constituencies that play a major supportive role and without which parents would find it much more difficult, as would people with Down’s syndrome, if that help were not there. We could all spend pretty much all day going through a range of different groups, and I reiterate that if I have omitted any in my introduction, I apologise for doing so.
The second reason for bringing this Bill forward is that we are dealing with a defined population—about 47,000 in the United Kingdom—who have a clear diagnosis. Trisomy 21 will not be confused with any other condition. At this point, it is worth my saying a word about mosaic Down’s syndrome, which affects about 2% of those with Down’s syndrome. For children with mosaic Down’s syndrome, some of their cells have three copies of chromosome 21 but other cells have the typical two copies. For the purposes of this Bill, it is my intent that this group should have the same application of provisions as others.
I come to this issue from many different angles—personal, medical and political. When I was growing up, the boy next door to me, Drew Houston, had Down’s syndrome. What is interesting is how as a child it is so much easier to accept difference and to accept people for what they are, rather than putting categories on to them—would that that would continue through all our lives. As a GP, I, naturally, dealt with individuals and families who had the range of medical conditions that I mentioned earlier. As Members of Parliament, we can all recognise why there is such widespread support for this Bill throughout the House, because we have all had to deal with the complexity of issues involved here. We are talking not just about a learning difficulty, not just about a range of medical conditions or not just about social care here; we are talking about a plethora of issues that can affect families and it can be energy-sapping for parents and individuals alike to have to deal with those number of challenges simultaneously and for a very long time.
I have a slightly odd personal link to that, as I worked at the genetics laboratory at the DuPont Institute in Wilmington, Delaware, which is well known to the current American President—the institute, not me. Studies have indicated that single palmar creases, which used to be known as simian creases, are observed in 28% to 86% of people with Down’s syndrome—it is one of the things that doctors look at—but in only about 1.5% of the rest of the population. I am part of that 1.5% with a perfect single palmar crease, so I was one of those whose chromosomes were checked while I worked there.
I digress. The third reason why the Bill is timely and necessary is that of life expectancy. When I was born, the life expectancy of someone with Down’s syndrome was 13 years. By the time I became a junior doctor, it was 30 years. Today, it is 58 years and people with Down’s syndrome are now living into their 70s. That makes a huge difference, because they are the first generation who will outlive their parents, and that has been a major impetus for me to bring the Bill forward.
In medicine, we have made huge improvements in dealing with congenital heart disease; ear, nose and throat conditions; and leukaemia. When I took up my first medical job in haematology-oncology in the Glasgow Royal Infirmary in the early 1980s, we were in the early stages of developing the treatments for leukaemia that have brought us to the position that we are in today. Today, successful cardiac surgery allows many Down’s syndrome children with heart conditions to thrive as well as any other child with Down’s syndrome born with a normal heart.
Interestingly, the cure rates for some leukaemia patients with Down’s syndrome are exceptionally high compared with the general population. In general, the cure rate for childhood acute myeloid leukaemia is already very high at about 75%, but Down’s syndrome children with a specific sub-type of AML called acute megakaryocytic leukaemia have an overall survival rate of about 80% to 100% compared with only 35% in non-Down’s syndrome children. It is thought that the same genetic mutation that leads to leukaemia in those children also helps them to respond better to a certain type of chemotherapy.
It has been found, however, that the cure rate of acute lymphoblastic leukaemia is slightly lower in children with Down’s syndrome than that expected in the general population, at about 60% to 70% compared with 75% to 85%. That is perhaps due to the fact that, as I mentioned, children with Down’s syndrome are more prone to infections and more likely to suffer from toxic side effects of chemotherapy than other patients.
As I mentioned, perhaps the greatest impact of the much to be welcomed improvements in life expectancy and health outcomes is the additional pressure on parents. It is extremely difficult, if not impossible, for most of us to understand what it must be like to wake up every morning and ask, “What will happen when I am not here?” We have a chance to lighten that burden on the parents of children with Down’s syndrome.
Lia Nici (Great Grimsby) (Con)
I wholeheartedly support my right hon. Friend’s Bill. On that point, does he agree that it is important to make sure that people with Down’s syndrome and other learning difficulties have the right to services when they are younger because it is vital to ensure that they are as independent as possible as adults, so that parents and carers feel that their children will have a good, long, healthy life?
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.
Ian Paisley
I congratulate the right hon. Gentleman on what he has said so far. It is unfortunate that legislative consent is not going to be considered in Scotland or Wales yet, and we hope we can encourage them to take that on and drive it forward. I hope the Northern Ireland Executive Minister of Health will adopt this and we will be champions together in this groundbreaking legislation.
Dr Fox
I am grateful to the hon. Gentleman for his point and perhaps I should explain why we did not bring this forward as a whole of the United Kingdom Bill. I did not want this to become an argument about the rights and wrongs or responsibilities of different parts of devolved Administrations in the United Kingdom; it has to be about people. If we can encourage other parts of the UK, through whatever systems of government are responsible for these issues, I hope the unity that exists across the House and the fact that this Bill was sponsored by all parties in the House of Commons will be a guiding light to those other parts of the United Kingdom about the urgency of making these rights available to all.
I end on the following point. This is not a Bill about a condition. It is not about dealing with Down’s syndrome; it is about people who deserve the same ability to demand the best health, education and care as the rest of our society. It is not on our part an act of charity; it is an act of empowerment and a recognition that all members of our society must have a right to respect, independence and dignity. That is why I have brought this Bill forward.
Sir Charles Walker
The hon. Lady—I think we are all hon. Friends today—anticipates the next part of my speech and I will not detain the House for too long.
Members of Parliament love to take credit for all the wonderful things they do, but I take no credit for this at all. This is entirely down to Corina. She said, “Right, Charles, you seem like a motivated, engaged individual. Let’s convene a meeting of all the people who matter to me and my daughter.” So we did that and I actually came up with a few names that were not on the list.
Who did we have on the list? We had the wonderful Alison Patrick, who is a fellow traveller and parent. We had an amazing man called Dr Nick Cholidis, who is Daisy’s consultant, because consultants need to be absolutely at the centre of this. We had the wonderful—and I do say wonderful—county councillor, Teresa Heritage, who is the cabinet member for children, young people and families. When we were travelling up on the train, Corina and I did say that she was a diamond. It is not often that we identify county councillors as a diamond, but she is a diamond and I hope she is listening. It is a function of modern politics that everybody has very, very long titles, so I do apologise. We also had Dr Jane Halpin, joint CEO of Hertfordshire and West Essex Integrated Care Systems and clinical commissioning groups. I must also give a special mention to Sally Orr of the CCG and Andy Lawrence, Hertfordshire County Council’s lead for social care.
Now, why are all those names important? Because the point of my right hon. Friend’s Bill is to bring services together and integrate them.
Dr Fox
I am very grateful to my hon. Friend for giving way. Everything he says is absolutely correct. Does that not have an added importance in an era of greater life expectancy, when we can no longer depend on parents taking those with Down’s syndrome to services? Those services must be able to be independently provided to those who need them, without the need for parents to be a part of the equation.
Sir Charles Walker
My right hon. Friend is so right. As a constituency MP—we are all constituency MPs first and foremost—like him, I have met parents in their 70s and 80s who are distraught and worried, as they know their time on this earth is coming to an end and they are so concerned about the welfare of the children they love. I expect all of us have seen that or will see that during our time in Parliament, and thanks to my right hon. Friend we can now begin to alleviate that grinding worry that parents have.
We convened that wonderful meeting and something amazing happened: we got a Down’s syndrome therapy advice clinic in Hertfordshire Community NHS Trust. We now have an integrated therapies advice clinic in place in Hertfordshire. It is only a pilot, but it is being run in the community hospital in Welwyn Garden City. It is in the constituency of my right hon. Friend the Member for Welwyn Hatfield (Grant Shapps), but I feel I can mention it because my constituents use it as well. I am so pleased that as a result of an intervention—as a result of parents wanting to get the very best for their children and engaging with a variety of service providers, as the hon. Member for Newport West (Ruth Jones) mentioned—we are actually making progress.
The Minister, in her wonderful “Dear colleague” letter, made it clear that there will be a consultation process. My right hon. Friend the Member for North Somerset is looking forward to that process because he wants to get more from Government, and who would dare to resist him in those demands and requests put so charmingly? I will participate in that, Corina will and many, many people in Hertfordshire will want to take part.
But Members of Parliament are very good at knowing best, and Corina, on the way in, said, “Charles, I’ve written you a little note in case you can’t think of what you want to say”. I am going to read her note word for word. It is 220 pages—no, 220 words; my speech was 220 pages. It will take one minute and then I will firmly sit down back in my seat, on my backside.
Corina said:
“Can you imagine being born a little different, just a little. Imagine with that difference comes challenges. Everything takes time. You have to work so much harder to reach the milestones but you do reach them it all just takes a little longer and a lot of determination. Yet with the support of Health services and local authorities your life is easy because you receive all the help available to enable you to achieve. Now imagine you have Down syndrome and being told because you look a little different those services are not available to you.
Accept your difference and just get on with it. A facial feature should never determine the care and support someone receives.
We are all born equal and a disability should never deprive anyone to a great quality of life.
Every child with Down syndrome will grow into a successful adult we just need our health services and local authorities to help parents in guiding them there.
Not much to ask really.
I can guarantee you that you will never meet a more stronger determined person than that of someone with that extra chromosome, but no one should need to get the strength and determination from having to fight everyday of their life.
Those battles need to end, parents need to be parents and we all need to recognise that having Down syndrome is really just being a little different.”
I thank my right hon. Friend for what he is doing today. He is an inspiration to 47,000 people and all their parents, and all of us.