Down Syndrome Bill

Mark Pawsey Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Dr Fox]

I am grateful to my right hon. and learned Friend, because he makes an important point that I will return to later about the need for dignity and independence, and to stress that there are no second-class citizens when it comes to Down’s syndrome.

[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.