Down Syndrome Bill

Lia Nici Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[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.

Down Syndrome Bill

Lia Nici Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Jo Gideon]

I thank my hon. Friend. I absolutely agree. I think we need to look at the whole pathway from education to work, as we said earlier.

I would like to mention a very interesting and important project that I was involved with a few years ago in a very isolated community in the Brecon Beacons called Myddfai. The challenge was to create sustainable employment and regenerate a very isolated village. As part of the project, we created a trading company, and within that trading company we were able to employ a number of young people. I am glad to say that, eight years on, there are still young people employed there today, some of whom have Down syndrome. Members can see if they look on the website, myddfai.com, how happy they look in the photographs. It is really satisfying to see how the right employment can fulfil.

[Lia Nici (Great Grimsby) (Con)]

My hon. Friend is making an excellent speech. Talking about employment, does she agree that this landmark Bill identifies that people who have Down syndrome have specific needs and that employment is a vital part of everybody’s life, as is having rewarding, independent living and good employers? We need more employers to consider people with special needs.

[Jo Gideon]

My hon. Friend makes a good point and we touched on it earlier. An understanding of what support is needed specifically is probably not good enough in the world of employment, education and local authorities as statutory providers. What this Bill will do, I believe, is put a duty of care on everybody, but also a duty of education. In my experience, employers genuinely want to be helpful to everybody in their communities, but there is a role for all of us to play in understanding what additional support might need to be provided to people with Down syndrome. I am sure that there are good local examples, but it is challenging for employers if they do not have that knowledge. We should consider that as part of the duty to develop personal development paths for young people with Down syndrome.

[Lia Nici]

What my hon. Friend says is vital. Does she agree that Members of Parliament are well placed to be that conduit with education organisations and employers to help and guide them, and to give them confidence in how to get help to ensure they can employ and support people with Down syndrome in their workforce?

[Jo Gideon]

I entirely agree. We are in an incredibly privileged place to highlight that need and to work with those who will help us take forward this massively important agenda. I congratulate my right hon. Friend the Member for North Somerset on his Bill.

--- Later in debate ---

[Lia Nici (Great Grimsby) (Con)]

I congratulate my right hon. Friend the Member for North Somerset (Dr Fox). As a newbie and a Back Bencher I still cannot quite believe that I am in the same place as him. This is a truly landmark Bill, and it has been fantastic to learn from him how such a Bill can be formed to make a real difference in human beings’ lives.

I am chair of the apprenticeship diversity champions network, and one of our aims is to get more people with learning difficulties and disabilities into apprenticeships and long-term work. The Bill will help to get employers to understand that people with Down syndrome are very able to work in their workplaces. After this debate, in National Apprenticeship Week next week, I will write to the top 100 apprenticeship providers to say that they need to think about employing more people who have Down syndrome and who have learning difficulties and disabilities more widely.

I do hate the term “disabilities”. It should be “differences” or “diversities”, because everybody can do some things and not others. I have felt for a long time that the word “disability” does a disservice to our fellow human beings. I feel blessed that, as I was growing up, my mother retrained as a social worker. She went to university, while she was working full time as a catering manager, to become an assistant social worker and went on to become a fully qualified one.

My mother specialised in learning difficulties and disabilities, so in my teenage years I had lots of discussions with her and learned about the different types of disabilities. She was and still is passionate about people with difficulties and disabilities having as full and independent lives as possible, which I have taken to heart and always thought about. We all want to be independent and to have fruitful and enjoyable lives, including work lives. If employers are watching or listening to this, or reading about it afterwards, they should start to think about taking on people who have Down syndrome, because they can add a fantastic extra dimension.

[Jonathan Gullis]

My hon. Friend is a doughty champion not just for Great Grimsby but for skills and apprenticeships across our country. She worked in the further education sector before entering this place, which goes to show the breadth of talent and life experience that we now have on both sides of the Chamber. Does she agree that that makes this a much more representative, diverse and better House of Commons?

[Lia Nici]

I thank my hon. Friend for his support and for his passion about education. We have many conversations about it, although I was worried at one point that he was going to say that I was teaching in further education before he was born, which, worryingly, might actually be true. We will brush over that.

I urge employers to think about taking on people who have Down syndrome. As the Bill is so specifically about Down syndrome, it will allow the message to be communicated much more widely to employers.

There is another reason I feel that this is a landmark Bill. Let me use a metaphor. One of my first jobs when I was 18 was as a barmaid in a country pub not far from Grimsby called the King’s Head, in a little village called Keelby. In the 1980s, pubs were part of their communities. They still are now, although perhaps not as much, sadly. One resident of the village—I will not use his proper name, as I have not asked his family’s permission, but we will call him Bob—lived across the road from the pub. He came into the pub every night and was welcomed by everybody. He had his own special tankard hanging up. When Bob came in there was a particular orange juice that he liked to drink at a particular strength—I had to learn how he liked his drink—and he had a pint with everybody. How England is embracing people with Down syndrome with the Bill is very much like how Bob was embraced in the pub. He was greeted as an equal, and joined in conversations and played pub games. It was very much part of his life. He was working at the time. Is it not lovely to think about how the country and, we hope, the wider United Kingdom can embrace the Bill?

As my right hon. Friend the Member for North Somerset says, it is important to have a named person in the ICS and care sectors.

[Brendan Clarke-Smith]

I endorse my hon. Friend’s comments about disabilities, and particularly that we all have different needs and should be looking to embrace that. I found out when I was 18 that I was dyspraxic, and it helped explain a lot of things for me. I still have a bit of a challenge with my positioning in the Chamber sometimes.

The way that we view special educational needs and other needs has changed a lot in this country over the years. Does my hon. Friend agree that the Bill is a great opportunity to showcase the talents and contributions of people with Down syndrome in this country, and that we can take that attitude forward so that the United Kingdom is a world leader in this regard?

[Lia Nici]

My hon. Friend is absolutely right. The Bill will help to take away some people’s fear. As I said at the beginning of my speech, I feel blessed because I have been able to learn about people with learning disabilities and people with Down syndrome since I was a young teenager, and I have also worked with people with learning difficulties and disabilities. Realising that they have the same or similar goals to everyone else—to find somewhere nice to live, to be independent, to find somebody they love and to have a good job—is the crux of all this. I hope that the specific mention of Down syndrome will take away the fear about what it means to have it, and that we will be able to have an open conversation in the village pub that is England and the wider pubs of the UK. That will mean that we can start to talk about it and not be scared of it. A lot of people are scared. They do not understand and they might not have ever met anybody who has Down syndrome. We in this place, with the fantastic guidance of my eminent right hon. Friend the Member for North Somerset, will enable that to happen.

--- Later in debate ---

[Gillian Keegan]

My hon. Friend makes a very good point, which has been raised by my hon. Friend the Member for Stourbridge (Suzanne Webb) and my right hon. Friend the Member for Scarborough and Whitby (Sir Robert Goodwill), who have previously mentioned specific genetic conditions. We will definitely consider overlaps and linkages between these conditions and Down syndrome through the consultation on the development of the guidance. Even though, as has been stressed many times, this Bill is specifically drafted to increase its chances of being passed, many groups will benefit from the work to develop this guidance.

I also thank my right hon. Friend the Member for North Somerset for the two amendments he tabled in Committee to ensure that the guidance is laid before Parliament on publication and to amend the Bill’s long title. I was pleased to accept both amendments on behalf of the Government. Laying the guidance in Parliament, as my very experienced right hon. Friend explained, will ensure it has the proper scrutiny.

I also thank my right hon. Friend, other hon. Members and stakeholders for providing invaluable feedback, on Second Reading and in Committee, on ensuring the implementation of the guidance in practice. Of course, the guidance must be acted upon for us to see real change for people with Down syndrome. That is why we have committed to having a named lead on integrated care boards who will be responsible for the implementation of the guidance in practice. The named lead will ensure that the right services are in place at local level and that people with Down syndrome are able to access those services. That will be a much-needed voice. We are determined that the guidance will be implemented fully and as intended at local level. This will lead to tangible improvements in the lives of people with Down syndrome, and I am personally very committed to that.

At the heart of the Bill is guidance for the relevant authorities—local authorities, and education and health authorities. I am clear that to ensure that the guidance is fit for purpose, we will consult widely and in an open and inclusive way. We will seek views from people with Down syndrome and their families, from the voluntary sector and from others who support people with Down syndrome to ensure that it reflects their needs and experience. We will work with stakeholders to ensure that the guidance remains fit for purpose. This is a real opportunity, and we do not intend to miss any aspect of it.

Once the guidance is published, the Government will keep it under regular review and update it periodically. As I said, we also recognise that people with genetic or chromosomal conditions other than Down syndrome may experience similar problems to people with Down syndrome, so we will definitely look at that and consider how the guidance can help some of those groups more broadly during the process.

I know from the debates during the passage of the Bill that employment is a really important consideration, on which we have not done well enough to date. We will continue to explore any steps required to make sure that people with Down syndrome who want to work can find work that is right for them. Fundamentally, we must make sure that people with Down syndrome maintain good health and receive the right education to support their transition into work. The Bill is an important and meaningful way of achieving that aim. It will provide those lasting foundations for people with Down syndrome to be successful.

Additionally, we are delivering a wide range of employment initiatives, such as dedicated disability employment advisers at our Jobcentre Plus sites. All these schemes, including the Access to Work fund and so on, will help to ensure that people with a learning disability have better opportunities in the workplace. Again, that is something that I am personally committed to.

[Lia Nici]

I thank my hon. Friend for the plans that are being put in place, but are there plans to ensure that people who work in the Department for Work and Pensions have the relevant training to understand the specific needs of people with Down syndrome and to help get them into work?

[Gillian Keegan]

I regularly meet the Minister for Disabled People and the Minister for Employment—the three of us are often together—to talk about how we can optimise opportunities for many people across our society, but particularly those with learning disabilities. The numbers are not good enough, and we know that we have more work to do. As I said in Committee, I will return to the issue of employment in developing the Down syndrome statutory guidance. We know that good work helps people to live happier, healthier and more independent lives.

On scope, as healthcare, education and housing are devolved matters, the Bill and guidance will cover England only. However, I know that there is real commitment to improving outcomes for people with Down syndrome across the whole of the United Kingdom, and I look forward to working with my counterparts in the devolved Administrations as we develop the guidance so that we can ensure that there is consistency of approach and inclusion for people with Down syndrome across the whole of the UK.

It has been a pleasure to work with my right hon. Friend the Member for North Somerset in supporting the Bill on behalf of everybody with Down syndrome and their families, including my own. Its passage so far represents the very best of the parliamentary process, with MPs working together cross-party for a common purpose. I very much look forward to the Bill’s successful passage through the Lords, which Lord Kamall will oversee. He will have heard the pleas from many Members about timing, to try to coincide with World Down Syndrome Day on 21 March. I commend the Bill to the House.