House of Commons
Friday 26 November 2021
The House met at half-past Nine o’clock
[Mr Speaker in the Chair]
Before we begin proceedings on private Members’ Bill, I wish to inform the House that the Secretary of State for Health and Social Care contacted me last night to confirm that he will be coming to the House at the earliest opportunity today to update the House on covid-19. I am grateful to him for this, and proceedings today will be interrupted at 11 am for the statement.
I beg to move, That the House sit in private.
Question put forthwith (Standing Order No. 163), and negatived.
Down Syndrome Bill
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.
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.
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.
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.
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?
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.
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?
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.
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.
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.
I thank the right hon. Member for North Somerset (Dr Fox) for not only initiating this important Bill but taking it to its Second Reading today. Many will be watching the debate, and the progress of the Bill, with great interest. Perhaps one of the reasons for that is that many people know people with Down’s syndrome, either as family members or relatives, or from their work in the community. They also know and appreciate the joy that Down’s syndrome children and adults bring to the community, the amount of love they give and what they contribute to their family, their school, their college, their workplace or their community.
I am a dad who would not change a thing; we have, in our son Andrew, a young man of whom we are very proud. While young people with Down’s syndrome can have superpowers—I believe they really do have superpowers—many need varying levels of support from their local NHS, their teachers, their education professionals and the local council to ensure that essential services such as housing, appropriate care and job opportunities are available to them.
The right hon. Member and many other Members have mentioned the voluntary sector and the support that it provides. I think there are many parents who would be quite lost if that support was not forthcoming from the voluntary sector. Let me give a special mention to Down’s Syndrome Scotland and, more locally in my constituency, Disability Sport Fife, which does a tremendous job to integrate people with a range of difficulties into sport. As I say, it does a fantastic job, and that needs to be recognised. No one said that being a parent is an easy job, but supporting parents and children who have that extra chromosome makes our society a better place, and this Bill will provide improved support so that lives can be lived with more ambition, fulfilment, independence, care and protection.
Finally, I thank the Government for their support for the Bill. I hope that, should it be passed, our colleagues in Wales, Northern Ireland and Scotland will look at it sympathetically and introduce equivalent measures across the UK. I wish the Bill Godspeed.
Thank you, Mr Speaker, for making special provision for my guest today, who is up in the Public Gallery. Corina Gander and I met at 7.15 am in a very cold car park in Cuffley with our walking shoes. As you are aware, Mr Speaker, there are problems with transport today, so we arrived in Moorgate and then spent an hour in the rain getting here, but it is an important occasion and we both wanted to be here. Corina is the mother of Daisy. Daisy has Down’s syndrome, and she is going to be watching this with her mum later tonight on Parliament TV, as will Daisy’s four sisters and her proud grandparents.
I first met Corina nearly two years ago. She came to tell me, in no uncertain terms, that what was happening in Hertfordshire was not good enough; there was not enough support for her and her daughter. I did not know a huge amount about Down’s syndrome then—I know a lot more now—but I said to her, “So what are the problems?” My right hon. Friend the Member for North Somerset (Dr Fox) brilliantly identified them in his introductory speech.
“Fundamentally,” Corina said, “the illness is just not taken seriously. When my daughter was born, she had terrible breathing difficulties. I kept saying to the doctors, ‘My daughter is struggling with her breathing,’ and they said, ‘Well what do you expect, Corina? She has Down’s syndrome.’” Then, one day, a health visitor came who had a relationship with the family, and she said to Corina, a worried mother, “What would you do, Corina, if this was one of your four other daughters?” Corina said to the health visitor, “I’d take her to A&E.” The health visitor said, “Well you know what to do, then, don’t you? I’ll hold the baby; you get your coat. We’re going to A&E.” That child, Daisy, was on life support for a month and then spent another three months in hospital. That is the stigma that my right hon. Friend is trying to address today.
Beyond stigma, my right hon. Friend identified other areas that need to be addressed—fragmented services, for example. At the moment, services are almost always fragmented. A young child will need physiotherapy, which will be in one place. Occupational therapy will be in another place. Speech and language will be elsewhere. Community paediatricians will be in another place. Then there are opticians, audiology and so on. It can be exhausting to navigate specialist services, but particularly so when one has a child who is very demanding of one’s time and other family commitments. We need to make it easier for parents to get the support that they need and, most importantly, their children need.
The hon. Gentleman is making a powerful speech in support of the Bill. He highlights a very important point about the need for integrated children’s services. At Serennu children’s centre in my constituency, all the services are under one roof, including the voluntary sector, and it is a comfortable place for families to go to. Children are not scared and families are not anxious. Does he agree that that is the best way forward?
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.
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.
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.
“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.
Thank you for calling me in this debate, Mr Speaker. It was an absolute honour to be asked to be a joint sponsor of the Bill by the right hon. Member for North Somerset (Dr Fox), and I congratulate him on the way in which he has manoeuvred this piece of creative legislation through the minutiae of Government and civil service—not only to get it to the Floor of the House, but to do so with a fair wind from Government. The indications from Government are that they will support and endorse what is trying to be achieved.
It is amazing, when we read the terms of the Bill and think about what it tries to achieve, that this has not been done before. That is what is so groundbreaking about it. This was a clear and obvious gap that the right hon. Member, through the discoveries he made, realised needed to be plugged. The Bill will do that. It is also a fine example of where private Members’ Bills come into vital use. This House would be poorer if private Members’ Bills were not part of the democratic process in our nation. That is very important.
When we come into this House on a daily basis, we probably do not notice the architecture or the windows in the way that many people do. However, the huge window that we see as we walk into St Stephen’s Chapel and through the hallway there is the equality window, on which there are the scrolls of rights and equality legislation that this House has been engaged in over the centuries. This Bill is landmark legislation. It will stand with that equality and rights legislation. That is how important the Bill is to the House and to the nation. We are saying, “Yes, people with Down’s syndrome are different, but they are equal, and this makes them equal under the law—equally entitled to all the rights and liberties that our laws provide for every other citizen.” That is what is so crucial about today’s debate.
Two Down’s syndrome babies are born every week in Northern Ireland—there is a high prevalence there—but that is not something to be scoffed at; it is something to be celebrated. This is an instance in which we celebrate life and we cherish life, and the fulfilment that that life can give. The Bill will help to normalise that sense of celebration: if people are given everything to live for, they will lead fulfilled and proper lives.
We have seen some impressive and inspirational accounts of the Down’s syndrome experience in Northern Ireland and what parents have done. They share the view that that Down’s syndrome experience is equal, which is why this law is needed to encourage the various authorities in Northern Ireland to support it. In our newspapers recently we read the story of little Jacob Smyth, whose mum and dad, Ciara and Adam, helped to set up a charity called Joy 21 after he was born. That charity shares the very positive message of what having a Down’s syndrome child means, and all the things that can be done to ensure that that child has a full and fulfilled life. There is no doubt that if a child is raised in a positive atmosphere, no matter what disadvantages people may say are involved, that positive environment will help to create the circumstances of a full and vital life.
Another positive story is that of Grace Wilson, a 14-year-old girl from Newtownabbey. When she was born, people were saying to her mum and dad, “Sorry about the circumstances.” The parents were not sorry about the circumstances; they were joyous to have a lovely little girl, and that little girl has exceeded all their expectations, because mum and dad made sure that she was mainstreamed, and was seen not as different and excluded but as part of our society. That is what changed little Grace’s life and made her exceed all her parents’ expectations.
If we limit people’s expectations by lowering their horizons, they will have less fulfilled lives. If we allow them to aim for the highest horizons possible, they will have the most fulfilled lives possible. The Bill allows that to happen, because it makes it clear that the Government must take account of the specific needs of people with Down’s syndrome when exercising their “relevant functions”, and must have due regard to the guidance issued by the Secretary of State when exercising those functions as set out in the Bill.
Another story is that of William Graham, a councillor from Bushmills in my constituency whose son has Down’s syndrome. That lad has always been part and parcel of the community, and he and his parents exemplify the fact that there is nothing different here—“nothing to see here”. This young lad leads a normal life. He works on a farm like other kids in the area, and has grown up to become a key member of his community.
We must ensure that this Bill allows people to see that where there is difference there must be equality—that where there is difference we can also be equal. I hope that the legislative assembly in Northern Ireland, the Scottish Parliament and the Welsh Assembly will all grant legislative consent. I believe that today is a landmark day, which will go down in history as the day when this process really got under way, and that our legislators will follow in this groundbreaking and world-leading piece of legislation. I commend it to the House. I also thank the Minister for the note that she gave us all earlier this week, indicating that the Government support the Bill and want to drive it forward.
My neighbour Matilda has Down’s syndrome. She is now 14, and I have watched her grow, develop and participate fully in family life. I have seen her going to school, running, cycling—occasionally somewhat precariously—and playing tennis, as well as being part of a street dance team. Life seems pretty typical for her. She goes to a mainstream school, Admiral Lord Nelson School in Portsmouth, where she is very much part of school life.
Yet I am aware of the barriers placed in the way of Matilda’s development, from accessing the school of her choice to having the right healthcare and, particularly, appropriate speech and language provision. Some of the simplest decisions are made very tricky because, although the decision of the parents and the individual is often taken into account, they have to interact with many Government agencies, as others have mentioned, which takes time. They sometimes have to fight for provision, which takes time. All of this is happening when they are just trying to enjoy family life.
From early on, I became acquainted with an incredible organisation in my then constituency called Portsmouth Down Syndrome Association, which has paved the way for many children in Portsmouth and the surrounding area, including Meon Valley and beyond, to be properly supported in education and to be given better access to healthcare; their needs are better met because the charity provides training to the health professionals involved. It is a place where new parents can meet others straightaway and have a wonderful support network around them, but perhaps most importantly, because the charity is involved in so many areas of day-to-day life, the support can be taken for granted.
The celebration of inclusion means that Portsmouth and Meon Valley see these children everywhere. The awareness that has been raised by this charity through clubs, societies, nurseries and schools has meant that the path for children with Down’s syndrome has got a lot better than at any time I have known.
As the MP for Meon Valley, I now have the founders of Portsmouth Down Syndrome Association, Rachael Ross MBE and Ken Ross, as my constituents. I cannot see them in the Public Gallery, but I know they are listening because they have been on the radio and various other media over the past few days. They have been instrumental in helping with this Bill. Many hon. Members will have met their son Max at the drop-in event on Tuesday, and I have followed his progress through school and into college. I have seen what he has managed to achieve through properly adapted processes delivered by this charity, and I am excited for his future.
However, from speaking to many colleagues, I know these stories are not typical of the outcomes, or at least of the outcomes they are aware of in their constituencies: families with little support from external bodies and children who are faced with struggle at all stages of their childhood, with very little prospect of employment as adults.
Mencap and NHS England reported in 2018 that only 6% of adults with a learning disability who are known to local authorities had a job. It is fundamentally not right that, due to a lack of awareness, in many parts of the country people with Down’s syndrome do not have the same opportunities that I see supported and delivered where I live by Portsmouth Down Syndrome Association.
It is also not right that these services have to be delivered by charities, when the state, with specialist advice, is capable of stepping in to support in these areas. As a consequence, when my good friend and colleague, my right hon. Friend the Member for North Somerset (Dr Fox), tabled the Down Syndrome Bill, I jumped at the chance to support him. I am honoured to be a sponsor of this Bill.
The framework delivered through this Bill will have lasting and far-reaching benefits for people with Down’s syndrome in England. I pay tribute to Ken and Rachael Ross and to Annabel Tall for all their work on this landmark Bill. I am extremely grateful that the Government have agreed to back the Bill, and I look forward to ensuring it becomes an Act that will help to transform lives.
I also congratulate the right hon. Member for North Somerset (Dr Fox) and pay tribute to Portsmouth Down Syndrome Association. I grew up in Portsmouth, and it is not a big place, but the association has a reach that seems to have helped Members on both sides of the House and across the country. I thank the National Down Syndrome Policy Group and the all-party parliamentary group for Down syndrome, which between them have led to the right hon. Gentleman tabling this world-leading Bill.
Just before the 2019 election, there was a lonely group of women standing in the Upper Waiting Hall with an exhibition about the challenges of being parents of children with Down’s syndrome—everything from maternity to education. It was bad luck they chose a difficult time to be here. I was about the last person in the building, and they were not able to speak to many Members, but they were determined and others since have been determined, and they have led to this point today. They got the all-party parliamentary group going and this Bill in place. It is always tempting when we get the chance to run a private Member’s Bill, because we get so many requests, so I pay tribute to the right hon. Gentleman for choosing this issue.
The Bill is long overdue. People with Down’s syndrome have additional challenges, but they are human beings and they have human rights. This is, in essence, human rights legislation.
We know the challenges: the National Audit Office and the Public Accounts Committee, which I have the privilege of chairing, have highlighted the lower health outcomes of people with learning disabilities in general, and there are particular issues for children and young people with Down’s syndrome. There is currently no specific requirement for people with Down’s syndrome to receive adapted services so, by obliging the Secretary of State to provide guidance, the Bill is a really important step. That guidance is needed in so many areas, including health, education, social care and, crucially, employment.
The right hon. Member for North Somerset highlighted the important issue of life expectancy, which was echoed by the hon. Member for Broxbourne (Sir Charles Walker). So many parents are worried about what will happen to their child as they grow up. People with Down’s syndrome are living longer, which is fantastic news, but any parent of any child with a disability, including a child born with Down’s syndrome, worries about what will happen to them. The state has needed to step up for some time, so I congratulate the Minister for giving the Bill a fair wind today, because it will provide some reassurance to parents.
I wish to pay tribute to my constituent Godwin, who is 17 and whose parents, to whom I also pay tribute, have spent some time sharing their experience with me. Godwin has been mainstreamed through education in Hackney and is now in sixth-form college, but he is approaching a difficult point and there is a challenging time ahead. It has not been an easy ride all the way through, but employment is the next step. His parents tell me that they are told too often that catering is the answer. As others have highlighted, only 6% of people with learning disabilities are in employment. There have been prejudices in maternity care and information and in education; we need to see that step change and the provision of support for a range of employment opportunities. That will be a challenge.
The Bill is right to require the Secretary of State to provide guidance, updated as necessary. We have previously had debates about what someone is paid to do a job and what a job is; a job is about human dignity and purpose and we should not write people off when they have come through mainstream education or narrow their opportunities. There are people with Down’s syndrome who are mainstream actors and mainstream in other roles, but they are the exception, not the rule. I hope the Minister will work with colleagues across Government to make sure that these issues are raised in other Departments.
There is currently no formal advice, even in respect of education. Godwin was well supported, but even then there were challenges. It is not difficult to train teachers. If people are trained in how to speak to someone with Down’s syndrome and explain what is required of them, that will benefit all children in the classroom.
One thing that I have learned about people with Down’s syndrome is that they are incredibly patient, but now is their time. They have waited long enough, and we must do all we can to ensure that this legislation leads to the correct services and support being available to them. The Bill is the first step, but, as we have highlighted repeatedly, paid employment is an issue, education support is patchy, health outcomes are still poor and parents worry about their children as they become adults.
This is a human rights Bill, but we need not just to pass it; we need to challenge the Government—I know the Minister will be up for this—to set metrics and targets and to measure every year the progress we should see in outcomes for people with Down’s syndrome. There is still a lot of heavy lifting to do. This Bill is a welcome beginning, but I think everyone in the Chamber stands four-square with the Government and the right hon. Member for North Somerset, and with all people with Down’s syndrome in this country and their families, in saying that we will keep watching and make sure that this legislation is implemented by this Government and Governments to come.
I am delighted to speak in this debate. Like others, I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on bringing the Bill forward and championing this worthy cause. I also pay tribute to the tireless work of others involved in this important campaign. Indeed, earlier this week I had the pleasure of meeting Tommy Jessop, who has been instrumental in spearheading the campaign.
A legitimate question might be why I am speaking in today’s debate, since hon. Members will be aware that health policy is a devolved responsibility of the Scottish National party and Green Scottish Government in Holyrood, so the Bill before the House does not extend to my constituents in the Scottish Borders. Given how much the Bill will improve services and life outcomes for those with Down’s syndrome, as we have heard throughout the debate, I am disappointed that corresponding legislation has not yet been introduced in Scotland. I am conscious that the hon. Member for Dunfermline and West Fife (Douglas Chapman), who is representing the SNP today, has indicated his support for the Bill; I think we would agree that we both want to see the SNP and Green Administration in Edinburgh bring forward similar legislation in Scotland as quickly as possible.
This Bill places a statutory duty on relevant authorities in England to ensure a level playing field for people with Down’s syndrome within the wider group of those with learning difficulties, so that the specified authorities take specific account of the unique needs of people with Down’s syndrome when planning, designing and providing services. I call on the Scottish Government to ensure that that level playing field does not stop at the border, just south of my own Scottish Borders constituency. One baby in every 1,000 born in the United Kingdom is born with Down’s syndrome, and around 40,000 people living in the UK today have Down’s syndrome. Of course, many of them live in Scotland, so I hope my participation in the debate will raise awareness in Scotland and highlight the need for this important legislation to be introduced across the entirety of the United Kingdom.
Turning to the Bill itself, clause 1(1) states:
“The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.”
After the guidance is published by the Secretary of State, the Bill imposes on relevant authorities a duty to have due regard to it. My question to my right hon. Friend the Member for North Somerset is how a postcode lottery will be avoided in that scenario, given that different authorities will be able to have different due regard to the guidance and subsequent delivery and provision of the various services. Perhaps, during the course of the debate or in later discussions, he could clarify how that postcode lottery might be avoided.
I am very pleased to be able to speak in this debate. Although it is related to services in England, it raises awareness of the increasing support, recognition and opportunities for those living in Scotland and in my constituency in the Scottish Borders who have Down’s syndrome. I pay tribute again to my right hon. Friend for introducing this Bill.
As we have heard today, Down’s syndrome affects a person’s development in many ways, but it is not the most important influence in how that person develops and lives their life. What happens after birth is far more important in shaping the outlook for a person with Down’s syndrome. Many people with Down’s syndrome are likely to need some level of support to enable them to achieve the same kind of life most people take for granted, so I am delighted that this Bill is before us today and goes some way to delivering those aims. I commend the Bill to the House.
I thank my right hon. Friend the Member for North Somerset (Dr Fox). I am thrilled to be here in support of this Bill, a Bill that will destigmatise Down’s syndrome, and its ambitions. The hon. Member for North Antrim (Ian Paisley) asks, “Why didn’t we think of this before? Why haven’t we done this sooner?” and he is right.
When I was doing my research for the debate, I found the information online about the syndrome very factual. It fails to say what amazing people those with Down’s syndrome are: people who make significant positive contributions to society, living fully independent and semi-independent lives, achieving more than ever, attending mainstream schools, passing exams, gaining employment, getting married and, of course, becoming actors.
From the age of 17, I spent 13 years doing Birmingham PHAB Camps, which are holidays for those with a physical or mental impairment or learning difficulty, including those with the syndrome. The other half of the group were those who were socially disadvantaged. The aim of the holidays was integration and, of course, a thumping great holiday. The important thing about the holidays was that, by midweek, there was a blurring of lines about who we were. No one would have been able to tell the difference between volunteers, people with a learning difficulty or physical impairment, or those who may have had Down’s syndrome.
The holidays achieved their aim and were such great fun. They were the best one-week holidays ever, learning the importance of inclusivity and parity of esteem for all. It was about integration of everyone, regardless of perceived disability. It was about integration of everyone, regardless of perceived disability. It was about independence for those on the holiday; everyone had a role to play. At the start of the week, there was a distinct unfamiliarity with those who were perceived to be different. By the end of the week, there was total integration and a clear understanding that a disability does not define anyone. It showed how important it is to ensure that where possible, those with the syndrome can live a life of independence, and that they should not be marginalised or seen as a problem. My right hon. Friend the Member for North Somerset, in wrapping up, said basically that we should be defined not by who we are, but by our talents, and I completely agree. We should not be defined by a physical, mental or learning disability, and no one should be defined as a second-class citizen.
Those holidays were just the best times—rattling around the Welsh countryside in beat-up minibuses, days on the beach and the infamous last night party. The holidays were also very much about friendships and connection, and I have so many fond memories. We all have a unique connection for our whole lives, and many of us are best friends for life—Tommy, Dave, Dawn, Nursey, big Dave and fit Dave, and not forgetting young Claire and Nobby, to name but a few of you all.
If this Bill supports in any form the desire to re-educate both the public and professionals about those with Down’s syndrome, and the advances—including in life expectancy—that have occurred in recent decades for Down’s syndrome, it has my support. Of course, this Bill does just that. It will not fix everything, but I welcome it because the principles are so important—enabling people to live as independent and prosperous a life as possible. To do this, it is important that we recognise their specific healthcare, educational and housing needs, and that local authorities play their part. That is not mission impossible, surely, and this Bill is a good start.
It is so important that we get the language right, and this Bill does so. It is a Bill that is set to improve the lives of people living with Down’s syndrome, who just need chances in life, like everyone else. I am delighted that it will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.
The Bill aims to ensure that certain health, education and local authorities take account of the specific needs of people with Down’s syndrome when exercising their relevant functions. That builds on the Government’s stated commitment to improve outcomes for people with a learning disability; support those with Down’s syndrome and their families, who have struggled to access services; and improve support in schools and social care support. The Bill aims to address those issues by providing guidance to authorities on how to meet the needs of persons with Down’s syndrome when carrying out their existing duties in certain specific areas.
It has been questioned whether the Bill’s aims will be achievable, particularly around destigmatisation. I do not agree with that, however; I believe that any step or measure will be a huge leap in the right direction. I understand, too, that there are some concerns about whether the guidance alone will produce the desired outcomes, and about the approach of breaking out Down’s syndrome from other learning disabilities or chromosomal disorders. The duties do not require, and are not intended to result in, enhanced treatment being given to those with Down’s syndrome over and above other groups, especially those with learning disabilities.
I hope at a future time to be having a similar debate about DiGeorge syndrome. While Down’s syndrome is caused by having an extra chromosome at birth, DiGeorge syndrome is caused by a problem with a person’s genes, called 22q11 deletion. It is hot on the heels of Down’s syndrome in terms of its prevalence in society, and I very much hope to bring it to the House’s attention. I hope that all who are participating in this debate will join me in a future debate to raise awareness of DiGeorge syndrome. For those who have the syndrome, or for family members who need support, I highly recommend Max Appeal.
I wonder whether the Minister can help me. The Government have announced investment in “generation genome”, a pioneering newborn screening programme to detect more than 200 rare diseases. That is part of a £95 million investment in the Office for Life Sciences, I think. Do we know whether 22q will be part of that? If it is, that would be a beyond huge step forward.
Finally, I dedicate my speech to Mark Chadwick, who was born with Down’s syndrome. And I say, so what? I have known Mark since 2015, and he has been a trusty steed since we first met—a charming, bright, engaging individual with a passion for dancing and politics. He recently applied to be a town councillor. I am very proud to call him my friend. He is a fine example of why the Bill is so important, and I am sure that he would agree with George Webster: why did we not think of this before? I 100% support this most excellent Bill.
I rise to speak entirely in support of this Bill receiving its Second Reading today, and hopefully travelling at pace through its whole passage through both Houses and to Royal Assent before World Down Syndrome Day on 21 March next year.
As my right hon. Friend the Member for North Somerset (Dr Fox)—whom I warmly congratulate on bringing this Bill forward—has set out in his superb opening speech, the Bill is so important as it aims to improve services and life outcomes for people with Down’s syndrome, amounting to some 47,000 people across the country. The Bill will particularly make England —I share my right hon. Friend’s ambition in time for it to be our whole United Kingdom—a better place to grow up and live with Down’s syndrome, bringing fairness to a group of people who, I am sorry to say, are too often marginalised. It will promote the rights and welfare of people who have Down’s syndrome at all levels of society, and raise awareness and understanding of it.
Fundamentally and importantly, the Bill will force education, health and local authorities in England to take people with Down’s syndrome into account when providing services, and will establish a national strategy for equality. Of course, most children with Down’s syndrome will learn to read and write, and go to a local mainstream school like other children. They will also rightly take part in many other activities that are on offer to all. Life should be as broad and fun-packed as that of any other child. Yet clearly, many daily challenges remain for those impacted by Down’s syndrome. One constituent of mine, Kate, contacted me about her two-year-old daughter who has Down’s syndrome. My constituent wrote:
“She is a bright, funny, gorgeous, amazing little girl. But already in her short life I have struggled to get her the help she deserves and needs. Covid has obviously played its part, but the issues are more ingrained. I am looking to the future and can see the battles ahead, the fights I know I will have. This needs addressing. It shouldn’t be like this.”
Those are wise words from my constituent. I very much hope that the Bill will make life better for my constituent and so many other families.
The Bill will transform the lives of people living with Down’s syndrome, and it is especially welcome that the Government have committed their support to it and will equally consult widely on the proposed guidance, ensuring that the voices of those with Down’s syndrome, their families and carers are heard, and that the guidance is fit for purpose. That is essential.
Provisions in the Bill will enable adults with Down’s syndrome to live, work and join in with confidence and independence, fully included in society alongside their friends and peers. Critically, I am hopeful and confident that the passage of the Bill will go a long way to destigmatise—we heard that word before and it cannot be restated often enough in this debate—Down’s syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. As my right hon. Friend said in his opening remarks, for the first time people with Down’s syndrome are beginning to outlive their parents. If we do not make provisions for this, I fear that there will be tragic consequences in the future when it comes to care.
I entirely support the Bill and am delighted that the Government equally support it. I look forward to seeing it progress rapidly through Parliament.
I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on bringing forward this Bill, of which I am honoured to be a co-sponsor. I am equally delighted that the Government have given their backing to it, because it will make such a difference to the lives of thousands of people.
My right hon. Friend expertly set out why the Bill is needed in his opening remarks. I add my thanks to charities and organisations up and down the country, including the National Down Syndrome Policy Group, for their tireless campaigning. Indeed, it is because of campaigners, charities and families from my constituency that I came to co-sponsor the Bill and I would like to share their stories this morning. In particular, I thank Lucy Cooper and the fabulous team at Get on Down’s.
Get on Down’s is an amazing local group. I encourage hon. Members to come and visit or join me in Parliament Square this afternoon to meet some of their regular service users and families. It is a weekly support group for families who have young children with Down’s syndrome or a prenatal diagnosis of Down’s syndrome in the Sutton area, including Carshalton and Wallington. Its key aims in supporting families include assisting and supporting families who have a child with Down’s syndrome; providing a network of support; introducing them to other people in the same position; organising external speakers such as Portage, speech and language therapists, physiotherapists, the Down’s Syndrome Association and psds; and providing congratulations and pregnancy packs to local hospitals to ensure that new parents get up-to-date information about Down’s syndrome.
That last aim stands out starkly, because I have heard some frankly shocking stories from parents, such as that after being given a prenatal diagnosis of Down’s syndrome, many received no signposting, support or guidance. One parent even said to me that after being given the diagnosis, she was immediately handed a leaflet on termination with no other context provided.
I had the honour of going to a weekly Get on Down’s meeting to meet the service users, families, volunteers and, most importantly, the amazing children who go there every week. I especially want to thank the lovely Charlotte for taking the time to show me around, talk to me about her concerns and tell me more about her life. She told me about the things that spoke to her and that she was most passionate about. I had already agreed to co-sponsor the Bill by the time of the visit, but that really drove home to me how important the legislation will be.
I am a firm believer that nothing demonstrates the impact of what we regularly talk about in here more than going out and talking to those directly affected by it. Charlotte talked to me about the messages that the National Down Syndrome Policy Group was backing that spoke most to her. She told me that she felt that she deserved equality, opportunities, paid work and to be listened to. I could not agree more. I hope that the whole House will listen to her and the 47,000 people living with Down’s syndrome in the UK today.
As we have heard, people living with Down’s syndrome face significant challenges throughout their life. That was echoed in the conversations that I had with families at Get on Down’s and is particularly relevant when it comes to accessing public services including education, health, social care and housing. I will focus on the realm of education, health and care plans, because I have a stark example from my borough.
The families I met told me about their experience of trying to access services that actually reflect and meet their needs, which is sadly something that we have heard too often from families up and down the country—the London borough of Sutton is no exception. Almost every week, a parent comes to me who has a child with additional needs, whether that is Down’s syndrome or something else, and is struggling to access EHCPs in the first place or has managed to get a plan but it in no way reflects their child’s needs.
I give the caveat that Sutton has a particularly bad record and has had a lot of national media exposure, including as part of a BBC “Panorama” exposé. The reaction to the Bill from some in local government, which was supportive but laced with some scepticism, shows why the Bill is needed because it demonstrates that the provisions in existing legislation, such as the Children and Families Act 2014, were not being properly applied. Sadly, as parents have not had a Bill of this type, they have needed to go into battle with public services to access things that most of us would expect as standard.
The Bill is about so much more than access to education, health and care plans. Its provisions address the challenges that people with Down’s syndrome face throughout life by ensuring that there is guidance that relevant authorities must take account of when designing and delivering services. I emphasise again that while accessing services can be a struggle in the first place, even when services are provided, they can be far from appropriate for the needs of those they are supposed to be supporting.
The hon. Member raises several pertinent points. This is about not just dental appointments, vaccinations and everything else that goes with what the Bill is trying to achieve, but changing attitudes. When parents are handed that bundle at the maternity hospital, they should not just get a leaflet: schools and support systems need to have it in mind that this is another child who deserves their attention and their professionalism. He makes that point exceptionally well.
I am very grateful to the hon. Member for his intervention. I think I can highlight that point in even more detail.
One really shocking thing I have found through constituency surgeries is that, when parents come to me with copies of their children’s education, health and care plans, the children’s names are often incorrect on the plans, many of which are quite obviously copied and pasted. They are templates, and there is a standard form that is adjusted very slightly whenever a new plan is issued. That is not how to cater and deliver services for children living with Down’s syndrome, or, frankly, for any child who needs access to an education, health and care plan. The whole point of the legislation and such plans, as well as the point of the Bill, is to make sure that services properly cater for the individual and reflect their needs accurately.
I passionately support the Bill because it will give parents and people living with Down’s syndrome the legal backing of the state if they do need to go into battle. I support the Government in their approach to consulting those service users, and indeed those who will be delivering these services, when it comes to designing the guidance. I also put it on record that I agree with my right hon. Friend the Member for North Somerset that it is vital that the issue of redress is taken properly into account during the Bill’s passage so that we have that in place by the time it becomes legislation.
The testimonies of the families I have spoken to at Get on Downs, and that I am sure we have all heard from our constituents and families up and down the country who have been campaigning hard to secure the passage of such legislation, have been incredibly heartfelt. I have heard over and over again what a difference the Bill will make to their lives, or what it would have meant to them if they had had this kind of legislation in place when they were struggling. When I met Charlotte and the families at Get on Downs, they said they wanted to be listened to, and we have the opportunity to listen to them today, so I hope colleagues will join me in voting for the Bill, start the journey of putting it into law and help better the lives of the thousands of people living with Down’s syndrome in our country today.
I also welcome the introduction by my right hon. Friend the Member for North Somerset (Dr Fox) of this very important Bill, which, when passed, will lead to the establishment of a national strategy to improve provision and outcomes for all those living with Down’s syndrome in England. The Bill will legally recognise people with Down’s syndrome as a specific group, ensuring that they are protected along with other minority groups.
Current Government policy focuses on recognising and addressing the inequalities and premature mortality of people with learning disabilities. Policy does not differentiate between different parts of the population except where there is clinical justification, and we have seen during covid that people with Down’s syndrome are particularly at risk from that disease and classed as clinically extremely vulnerable. The aim of this Bill is to ensure that people with specific challenges caused by Down’s syndrome are given the right support by local authorities, which are to be given guidance on appropriate steps to take to meet specific needs, building on the Government’s stated commitment to improve outcomes for people with a learning disability.
It is important that children with Down’s syndrome attend mainstream schools, but too many are still sent to special schools, although that varies between local authorities. When I was in my early teens my mother spent a couple of terms as a supply teacher at a special school in Hexham, Northumberland. She absolutely loved it—loved her pupils, loved teaching them—and found it so rewarding and such an honour to teach children with a variety of intellectual and learning disabilities. We were lucky as her daughters that she had the initiative to get us in to visit from time to time, opening our eyes—our minds, hearts and souls—to those who may not be quite the same as us but are still very much loved and valued members of our society. It also taught us that people are different and this is what makes us all so special as human beings.
We all want equal opportunities for people to believe in us as individuals. This Bill will place a requirement on every school to meet the needs of pupils with Down’s syndrome, giving them a choice about which school to attend. As society becomes, perhaps a bit too slowly, more inclusive, life is changing for people with disabilities, including Down’s syndrome. Mainstream education is becoming more common, and this has brought considerable benefits to all children. There is no doubt, however, that it can be challenging at times to include a child with Down’s syndrome in the classroom, as it can be with any child with a learning disability, and teachers would need training to better understand the condition, including in helping pupils with Down’s syndrome to improve their speech and language and helping them to reach their optimal communication skills, as well as ensuring all children can access the curriculum.
Many parents in my constituency have complained to me that they have to fight sometimes for an education, health and care plan. It is shocking that some children with Down’s syndrome—a well-known learning disability with a well-known need for good early educational intervention—do not have a full-time EHCP and that some do not even have one at all. Not having a plan means the right provisional support system is not available for them or even that they have no support whatsoever.
Research shows that mainstream schooling produces better outcomes for children with Down’s syndrome and that students with Down’s syndrome gain academic, social and behavioural advantages from being educated with their typically developing peers in mainstream school. With appropriate support and accommodations, students with Down’s syndrome can benefit from mainstream schooling, and inclusive education has benefits for all students.
My daughter, who is now an adult, had the joy of going to primary school with a classmate who had Down’s syndrome. She enriched her classmates’ lives, and as they all got older and started to notice that she was different they did not treat her any differently: to them she was her, and absolutely perfect as she was— someone they had carefully grown up with. As they got older it also helped them to be more caring and considerate. Unfortunately, their friend was not allowed to stay with her friends beyond middle school; that was not only sad for her and her family, but was a loss for her friends and the school.
I also want to briefly highlight the lack of job opportunities for people with Down’s syndrome, as has been mentioned. There are around 40,000 people with Down’s syndrome living in the UK and only 6% are employed; we should think of the isolation and loneliness of the 94%. I want to take this opportunity to thank Little Gate Farm for all the work it does to help and support people with learning disabilities near me. This Bill aims to improve employment rates for adults with Down’s syndrome. We must unleash the potential of everyone, including people with Down’s syndrome, to give them the opportunity to show us all what they are truly capable of and to ensure they get the same chances as everyone else.
This is about levelling up—levelling up individuals. It is right and just to give people with Down’s syndrome recognition of their specific needs and give them the dignity of a human person. It is never too late to be who we want to be, and never the wrong time to do the right thing.
Proceedings interrupted (Standing Order No. 11(4)).
With permission, I would like to update the House on covid-19. Before I begin, I wish the shadow Secretary of State, the right hon. Member for Leicester South (Jonathan Ashworth), well as he recovers from covid-19.
Over the past 48 hours, a small number of cases of a new variant have been detected on our international genomic database. I want to reassure the House that there are no detected cases of this variant in the UK at this time, but this new variant is of huge international concern. The World Health Organisation has called a special meeting this morning, and that meeting is taking place right now. I want to update the House on what we know so far, why we are concerned and the action that we are taking, although I must stress that this is a fast-moving situation and there remains a high degree of uncertainty.
The sequence of this variant, currently called B.1.1.529, was first uploaded by Hong Kong from a case of someone travelling from South Africa. The UK was the first country to identify the potential threat of this new variant and to alert international partners. Further cases have been identified in South Africa and Botswana, and it is highly likely that it has now spread to other countries. Yesterday, the South African Government held a press conference where they provided an update on what they know so far. I want to put on the record my thanks to South Africa not only for its rigorous scientific response but for the openness and transparency with which it has acted, much as we did here in the United Kingdom when we first detected what is now known as the alpha variant.
We are concerned that this new variant may pose substantial risk to public health. The variant has an unusually large number of mutations. Yesterday, the UK Health Security Agency classified B.1.1.529 as a new variant under investigation, and the variant technical group has designated it as a variant under investigation with very high priority. It is the only variant with this designation, making it higher priority than beta. It shares many of the features of the alpha, beta and delta variants. Early indications show that this variant may be more transmissible than the delta variant, and current vaccines may be less effective against it. It may also impact the effectiveness of one of our major treatments, Ronapreve.
We are also worried about the rise in cases in countries in southern Africa, especially as these populations should have significant natural immunity. In South Africa in particular, there has been exponential growth, with cases increasing fourfold over the last two weeks. In Gauteng province, which includes Johannesburg and Pretoria, some 80% of cases, when tested with a PCR test, have shown something known as the S-gene drop-out, which we associate with this variant. While we do not yet know definitively whether the exponential growth in South Africa is directly associated with this new variant, this PCR test analysis does indicate that there could be many more cases of this new variant than just those that have been sequenced so far.
Even as we continue to learn more about this new variant, one of the lessons of this pandemic has been that we must move quickly and at the earliest possible moment. The UK remains in a strong position. We have made tremendous gains as a result of the decisions that we took over the summer and the initial success of our booster programme, but we are heading into winter and our booster programme is still ongoing so we must act with caution. We are therefore taking the following steps. Yesterday, I announced that from midday today, we are placing six countries in southern Africa on the travel red list. These countries are: South Africa, Botswana, Lesotho, Eswatini, Namibia and Zimbabwe.
Anyone who is not a UK or Irish resident who has been in one of these countries in the past 10 days will be denied entry into England. UK and Irish residents arriving from these countries from 4 am on Sunday will enter hotel quarantine. Anyone arriving before those dates should take PCR tests on day 2 and day 8, even if they are vaccinated, and isolate at home along with the rest of their household. If you have arrived from any of these countries in the past 10 days, NHS Test and Trace will be contacting you and asking you to take PCR tests, but please, do not wait to be contacted; you should take PCR tests right away. We have been working closely with the devolved Administrations on this, and they will be aligning their response. In recent hours, Israel has also taken similar precautions.
I wish to stress that we are working quickly and with a high degree of uncertainty. We are continuing to make assessments, including about those countries with strong travel links to South Africa, and we are working with our international partners, including South Africa and the European Union, to ensure an aligned response. This variant is a reminder for us all that this pandemic is far from over. We must continue to act with caution and do all we can to keep this virus at bay, including, once you are eligible, getting your booster shot. We have already given more than 16 million booster shots. The booster jab was already important before we knew about this variant, but now it could not be more important. Please, if you are eligible, get your booster shot. Do not delay.
We have made great progress against this virus—progress that we are determined to hold on to. This Government will continue to do whatever is necessary to keep us safe, and we all have our part to play. I commend this statement to the House.
I thank the Secretary of State for advance sight of his statement and for his kind words about the shadow Secretary of State, my right hon. Friend the Member for Leicester South (Jonathan Ashworth), which we all share on this side of the House.
We have been critical of the Government in the past for taking too long to protect our borders from new variants, particularly when delta was left to run free, so we are glad to see swift action today. Adding these countries to the red list is the right call and we support it. Can the Secretary of State explain why these specific countries have been added, and not the wider group where cases of this variant have been detected? Is the addition of further countries under active consideration over the coming days? Perhaps in the meantime, we might at least require PCR tests on arrival, rather than lateral flow tests, for countries not on the red list that have cases.
As the Secretary of State says, we have made great strides in getting people vaccinated in this country, but we have always warned that no one will be safe until everyone is safe. It is regrettable that when we offered plans to the Government earlier around the global expansion of vaccination, they were not taken up. Today’s news reflects a failure of the global community to distribute the vaccine, with just 5.5% of people in low-income countries being vaccinated. Can the Secretary of State tell us about the work he will be doing with his counterparts in affected countries to ensure they have the vaccines and infrastructure to deliver them? Can he give us an assurance that our cuts to aid that we made in this country will not affect that? Does he share our regret that we had to destroy 600,000 expired doses of the vaccine in August? What are we doing to ensure that our stockpiles get to other countries that need them?
I turn to testing. Earlier this month capacity went down significantly, with members of the public reporting that their local centres had closed. Will the Secretary of State reassure us that testing will still be an integral part of our approach? Will he take this opportunity to refute the rumours that Test and Trace will be scaled down further?
This is also a reminder that we need to go further and faster with vaccination at home. Children’s vaccination rates remain low. The progress on the booster is of course welcome, but we know that to get there by Christmas we need to go even quicker. There are huge pockets of the country where significant numbers of people remain unvaccinated—40% of people in Nottingham, 38% in Wandsworth and 30% in Bolton, for example. The message the Secretary of State had for those people today was very important.
This is a reminder that covid has not gone away. Will the Secretary of State make commitments to fix sick pay, which is still necessary 19 months on? Will he go further to ensure that public buildings, schools and businesses have the support they need? Surely, we must now revisit cost-free measures, such as mask-wearing in public spaces.
To conclude, this is a sobering reminder of the challenges the pandemic brings. We must meet this moment as we have throughout the last 19 months: by pulling together and looking out for each other, and in that British spirit of doing what must be done.
I am pleased to respond to the shadow Minister. His first question was on the six countries we have decided to put on the red list from midday today. We are going primarily by where the new variant has been detected at this point. It has been confirmed in two countries in southern Africa: South Africa and Botswana. We included the four other countries in southern Africa I mentioned earlier as a precaution. The shadow Minister will not be surprised to know that we are keeping this under review and that there are very live discussions going on around whether and when we should add further countries. We will not hesitate to act if we need to do so.
On vaccine donations to developing countries, the shadow Minister is absolutely right about the importance of that. He will know that the UK has, for a country of its size, done far more than any other country in the world, with over 30 million donations already. We are absolutely committed to our 100 million target and will continue to work bilaterally with countries, but also through the COVAX alliance, to get out more vaccines to the developing world.
Testing remains a hugely important part of our response to the pandemic. It is playing an incredibly important role and that will continue for as long as is necessary.
Lastly, vaccinations are of course the primary form of defence in our country. In one sense, we are fortunate with such a high level of vaccination. Over 80% of people over the age of 12 have been double vaccinated and 88% at least are single vaccinated—one of the highest rates in the world—but we need to go further and even faster. It is great news that our booster programme, at over 16 million jabs across the UK, is the most successful in Europe—now, I believe, over 26% of the population over the age of 12—but we want more and more people to come forward as soon as they are eligible. I cannot stress the importance of that enough. Today, as the hon. Gentleman said at the end of his remarks, is a sober reminder that we are still fighting this pandemic and we can all play a part.
The viral mutation process of genetic drift depends on the number of times a virus gets to replicate, so the wider the spread geographically and the longer it goes on, the more viral replications will occur and the more chances there will be for mutations—so there is a need to redouble our efforts to vaccinate populations right across the globe. My right hon. Friend mentioned the potential increased transmissibility of the virus, but there is another important element, which is the severity of the illness produced by a variant. What do we know about that so far and the potential, therefore, for an impact on the health service?
As always, the analysis provided by my right hon. Friend is absolutely correct. On the severity of the new variant, I am afraid we do not know enough yet. From what we can tell from what we might call a desktop analysis, the number of mutations that have been identified—double those for the Delta variant—does indicate that there is a possibility that it might have a different impact on an individual, should they get infected. But as I said earlier, there is a lot we do not know about it and we are working with our international partners to find out more.
I thank the Secretary of State for his statement and for emphasising the importance of vaccination. However, his statement makes it clear that we are seeing new variants and the risks still remain. Therefore, taking further public health measures is really important. I ask him again to give clear leadership on ensuring that face coverings, social distancing and high levels of hygiene are instituted, as well as better ventilation. Those measures make a difference, as we have seen throughout the past two years.
The hon. Lady makes a good point about the need to follow guidance and the rules currently in place. The plan A policies that we put in place remain the policies we need at this time, but she will not be surprised to know that we keep them under review and, if we need to go further, we will.
The shadow Minister mentioned the number of people who are unvaccinated. Please, Secretary of State, can we bring a nasal vaccine to market? Stage 2 trials are proving really positive, with high rates of efficacy. We have to throw the kitchen sink at this. I cannot understand why we are not making nasal vaccines, which would increase the uptake of vaccines in this country and across Europe, available.
My hon. Friend is right to point to the continued importance of the vaccination programme. There are some 5 million people in the UK who have not received a single shot of any type of vaccine. He is right to talk about the importance of the delivery methods of a vaccine and, as he has mentioned, there are trials of nasal vaccines. However, I am sure he will understand that until such vaccines are approved by our independent regulator, we will not be able to pursue them.
I thank the Secretary of State, the NHS and everyone responsible for the booster programme that is helping to protect us as we enter the winter months, but is not one of the lessons of the news he has announced today that, if we do not tackle the enormous vaccine inequality around the world, we will continue to be exposed to new variants of this type? In Africa, for example, just 6.6% of the population have been vaccinated. Of course, it is every Government’s first duty to protect its own people—everyone understands that—but does he agree that the United Kingdom and other rich countries in the world must do more to ensure that surplus doses that we do not need are distributed to countries that do need them, rather than not being used and ultimately, in some cases, destroyed?
I very much agree with every word the right hon. Gentleman says, especially about surplus vaccines. That is exactly what we have done: whenever we have identified vaccines we may not need, we have offered them either bilaterally or through the COVID-19 Vaccines Global Access, or COVAX, programme. We will continue to play our role but, importantly, we will also continue to urge our international partners to do all they can as well.
I commend the Government for the speed with which they have taken this decision and I welcome the Scottish Government’s following suit, because in the past there has been concern about the lack of consistency across the UK. Does the Health Secretary agree that this is a useful reminder that the pandemic is still with us and we all have a responsibility to get vaccinated, which includes getting the booster?
First, I can tell my hon. Friend that there has been excellent co-ordination across the UK on this matter. As I mentioned earlier, Scotland and all parts of the UK will be aligning with what I have announced. The booster programme, as I say, could not be more important. The very latest figures are that 28.5% of the UK population over the age of 12 has been boosted, far and away more than any other country in Europe and, I think, second only to the United States, but that is still not enough. We need everyone to come forward, and if there are people out there listening and wondering what they can do, the single most important thing they can do, if they are eligible for a booster, is to go and get it. Go out this weekend and make it your booster weekend.
I recognise that the Secretary of State has come to the House at the earliest opportunity, and I appreciate his swift action. I hope that it is an indication of the way in which he will engage with us all on this vital issue. Has he received any information from South Africa and the other nations of southern Africa that he mentioned about the impact of the variant on children, and are there any plans to offer second doses to children here in the UK?
That is a very good question. This has moved so fast that so far we have had no indications about the potential impact of the new variant on children in particular. As soon as we have any information, we will want to share it.
The child vaccination programme in the UK is going well throughout the country, and has built up a significant momentum. As for whether second doses would be recommended, we will await the expert advice of the Joint Committee on Vaccination and Immunisation.
I welcome the swiftness of the Government’s response to the new variant that is under investigation. Can my right hon. Friend confirm that, as the situation develops, the Government will continue to move at the earliest possible opportunity?
Yes, I can certainly make that commitment to my hon. Friend. She may know from the information that the Government have already shared that we identified the significance of this variant only two or three days ago, and we did not hesitate to take action, because, as we have always said, we will protect our borders when it comes to this pandemic.
As the Secretary of State has reiterated, getting vaccinated is vital, and I am looking forward to my booster jab tomorrow. However, as he knows, some groups and some communities are more hesitant and more fearful about being vaccinated. I am conscious that vaccination rates in the city of Nottingham are below those in the wider county, and also that our local health services are already under huge pressure. What is the Secretary of State doing to drive up vaccination rates in areas where there has been low take-up, and will he now offer places such as Nottingham additional support as we head into winter?
I want to ensure that all the support that is needed for our vaccination programme is there, across England. The hon. Lady rightly asked what we were doing to reach out to those who, for whatever reason, have so far been a bit hesitant. We have been working actively for months with many community leaders. We have added many more venues and ways in which to receive the vaccine, so access has been improved. Significant work is also being done on communications and ensuring that the right messages are there, and that people, including clinicians, are available to answer questions. However, the hon. Lady was right to point to the importance of this issue, and I am pleased to hear that she will be getting boosted this weekend.
Ivermectin has shown promising results as a potential treatment for covid-19 in places including South Africa. More than five months ago it was added to the Oxford University trial, which is called PRINCIPLE. When will the results of that trial be available, and what are the Government doing to expedite the process? Ivermectin may not be a magic bullet, but on the other hand, it may be.
My hon. Friend has made an important point. One reason for the difference between dealing with this pandemic today and dealing with it even a year ago is that we already have more treatments, and my hon. Friend has just mentioned another potential new treatment. I am afraid that I cannot give him any exact date for when we think the trials will be over, but I am pleased that they are taking place. He is right to point to the potential of that treatment, but I can reassure him that whether the UK’s engagement is with ivermectin or with other potential new treatments, it could not be more engaged.
I thank the Secretary of State for coming to the House today to make his statement with such urgency.
A number of high-profile sporting events were due to take place in South Africa this weekend, including the united rugby championship, in which the Cardiff and Scarlets rugby teams were due to play. What assistance has been given to get them home ahead of the midday deadline today? May I also ask what discussions the Secretary of State has had with the devolved Administrations to ensure a co-ordinated, orderly introduction of the new travel restrictions?
I understand that this is difficult news, whether for the sports teams or the thousands of British tourists and others who currently find themselves in South Africa, Botswana or any of these countries, but I hope that many will understand. Indeed, I have had messages today from people who are in South Africa, saying that this has made their life a bit more difficult when it comes to getting back home, but they fully understand and support the action that has been taken.
The hon. Member asked what could be done to try to get the team back before the deadline. The answer is nothing; we will not do anything to help them get back before the deadline, because for anyone who is in South Africa, the best thing to do is to come back after 4 am on Sunday and go into hotel quarantine.
I commend the Secretary of State for the extremely prompt action that he is taking to protect our citizens. Although these are early days—he has spoken about the uncertainty and said that we do not know enough about the new variant—does he have any assessment of the length of time for which the measures that he has announced might be necessary?
If we are to help reduce the chance of further variants emerging that will threaten the health of our citizens, we clearly need to accelerate vaccination programmes in other countries, particularly in the Commonwealth. Why are Ministers therefore so determined to use the World Trade Organisation ministerial meeting next week to block progress towards achieving—as South Africa and India want—a temporary waiver of intellectual property rules to help developing countries to develop their own vaccine manufacturing capacity?
The answer is that a temporary waiver of intellectual property for such purposes would be a huge step backwards. It would not help developing countries and it certainly would not help if we needed new vaccines, not just for covid-19 but for a future pandemic; the industry and businesses might step back and not bother developing if they believed that the intellectual property would always be waived in such circumstances. What is important, as I think the hon. Gentleman would agree, is that the companies developing these life-saving vaccines have an appropriate pricing and access policy for each country, so that vaccines are priced appropriately and accessibly for developing countries, and rich countries such as the UK, the US and others continue to do all they can through international vaccine donation programmes.
I commend the Secretary of State on the swift actions he has taken in relation to the new variant. He is completely right that the booster programme is more important now than ever, but residents in Rothwell, Desborough, Burton Latimer, Barton Seagrave and Kettering are telling me of the difficulty that they are experiencing in getting a booster in the Kettering constituency. They are being asked to go to Corby or Northampton, which is difficult for many people. Can we have a boost to the booster programme in Kettering, with immediately local walk-in booster centres?
My hon. Friend is right to talk about ease of access to the booster programme. Of course we want to make it as easy as possible, and we are adding numerous sites day by day. I will absolutely see what we can do with regard to Kettering. The Vaccines Minister, the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Erewash (Maggie Throup), has heard what my hon. Friend has said. I suggest that they have a quick meet after this, as I am sure that she is eager to open up more access points in Kettering.
I echo the hon. Member for Kettering (Mr Hollobone). I have my booster on 18 December, which a few days ago was the first date being offered near me in Bristol. There is now a growing divide between people who will have had three jabs and people who will not have been jabbed at all. There are some hardcore vaccine refuseniks, but there are also quite a lot of people who think that they are now immune because they have had a mild dose of covid. However, we know that they could well be at risk, particularly with new variants coming on board. What more can we do to persuade those people who have not been jabbed at all that it is time to get jabbed?
The hon lady is absolutely right: there are still too many people out there who are, let us say, vaccine-hesitant—they are not complete refuseniks but just want more information and perhaps have read the wrong type of information. More needs to be done, continuously, to reach out to them. Where there are people in particular communities, we are working with community leaders. There has been a real change in our comms programme and we are trying to reach out to people in different ways—for example, we are making much more use of social media, as well as our general comms. If the hon. Lady has some new ideas that she thinks we can try, we are listening.
I, too, welcome the speed with which the Government have acted. Many Carshalton and Wallington residents had previously contacted me to express concerns about people rushing to fly to the UK before a country was added to the red list. Will my right hon. Friend confirm that flights from the six countries will be banned until the quarantine is introduced on Sunday and that the same policy will apply to any new countries that are added to the red list?
The decision to ban the flights—it is obviously a temporary ban—was taken to allow us the time to stand up the red-list managed quarantine system. Once that system starts and we are comfortable that it is functioning as we would like, we will review the decision on those flights. We will consider banning flights from any other country if it is necessary for reasons similar to those taken in respect of this decision.
My right hon. Friend is absolutely right to take the new variants as seriously as he does. Given the critical importance of the need to avoid damage to children’s education and development and the economic havoc that more lockdowns would bring, if the news from our world-class scientists who are analysing the effectiveness of our existing vaccines against the new variants is positive, what assessment has my right hon. Friend made of the ability to stretch the booster programme to bring it down through the age categories as we head into winter, thereby getting boosters into more arms sooner than the six-month gap?
Regardless of the news about this variant, the booster programme remains crucial. In fact, as I said earlier, it is even more important because of this news. My hon. Friend asked about whether the programme can be extended to lower age categories; as he knows, boosters were extended to the 40-to-49 age group on Monday, and the Joint Committee on Vaccination and Immunisation is already considering whether the programme can be extended further. I await its advice.
Down Syndrome Bill
Like many others, I speak in support of the Bill. I add my congratulation to those from colleagues of all parties to my right hon. Friend the Member for North Somerset (Dr Fox) on having brought the Bill to the House and his passionate speech in favour of the measures it contains. Down’s syndrome is a visible condition and the name will be familiar to very many people, but my right hon. Friend’s speech raised so much awareness of a condition of which there are so many factors that members of the public or those who have not been directly affected are not aware. This morning’s debate, like those on so many sitting Fridays, has been an educational process. We have learned something about the wider world, which is a good thing for us as politicians to do once in a while.
There are 47,000 people in the UK with Down’s syndrome. I am grateful to my constituents who wrote to me in advance of this debate to tell me about the issues that they and their families have faced and the challenges that the condition can bring. They have told me about how the language and attitude on learning that the baby has Down’s syndrome can often be negative and discriminatory, and that young people with Down’s syndrome are more likely to be hospitalised than those without it, and for longer.
From my research in preparation for this debate, I have learned that those with Down’s can have problems with their heart, bowel difficulties, difficulties with hearing and vision and increased risk of infection, so there is possibly an increased requirement for health services. Parents are often discouraged from sending children to mainstream schools because teachers there sometimes lack confidence and the knowledge to include children in classes alongside siblings and neighbours. Post-16 education is often a “one size fits all” approach that sees learning stall. Social care can often be inappropriate. My right hon. Friend gave the example of those in older life, and he was right to say that there is a scandal that we very much need to avoid in terms of possibly putting those with Down’s syndrome in age-inappropriate settings.
The Bill provides the opportunity to make life-changing differences for a condition that affects so many aspects of life across the health, education, housing and social care fields. The Bill is short—only a couple of clauses—and it requires the Secretary of State to create guidance. Various authorities would be required to pay due regard to that guidance. One might argue about whether primary legislation is required for the production of guidance. We ought not to have laws for laws’ sake, but given the wide variety of bodies that the guidance will affect, the argument in favour is strong and has been articulated strongly this morning. The importance of the changes that can be brought about once the guidance is written and implemented has also been highlighted.
There is a precedent for the Bill. We have not spoken yet of the Autism Act 2009, which shares some similarities with this Bill. I was particularly struck by the words of the National Autistic Society:
“The…Act has brought about some great changes to the way that autistic people access support. Because of the Act, almost every council has a diagnosis pathway for adults and a specific Autism Lead. Additionally, it makes sure that every autistic person has the right to a social care assessment, something which was difficult for many autistic people more than10 years ago.”
It appears that that legislation has brought about some positive changes, so I am hopeful that, by supporting this Bill today, we will be able to revisit this situation in 10 years’ time and find that we have seen great strides in the way that the needs of people with Down’s syndrome have been met. The Bill certainly commands my support, as I am sure it does across the House, and I wish it well.
It is a pleasure to follow my hon. Friend the Member for Gedling (Tom Randall) and to be in the Chamber for my first sitting Friday. It is a completely different experience—it is lovely to see the House being so collegiate—and it is fantastic to be supporting the Bill from my right hon. Friend the Member for North Somerset (Dr Fox). Few private Members’ Bills receive so much support and the fact that this Bill has done so is testament to how welcome it is. I have met some of the fantastic families who have campaigned on this issue and I know that the Bill is the culmination of years of work.
Over the past few decades, we have seen significant progress in how we support those with disabilities to live fulfilling lives—notably, through the Equality Act 2010. However, the term “disabled people” refers to such a large and varied group that legislation for those with disabilities needs to be more targeted if it is going to address people’s individual needs. The Autism Act 2009 was a decade ago and it is time that we did the same for those with Down’s syndrome. This Bill will help people with Down’s syndrome and their families to receive public services that are suited to their needs in every interaction that they have with local and national government, from jobcentres to social care.
One area where that is particularly relevant is in education. The Down Syndrome Bill will allow parents to choose the best school for their children—whether it is a mainstream school or a special needs school—because, wherever their child attends, the local authority will have to ensure that the education provided is adapted to their needs. As research suggests that children with Down’s syndrome have significantly better educational outcomes in mainstream schools, the Bill could have a transformative impact for some children.
Social care for people with Down’s syndrome is another area that will see a change because of this Bill. Although social care has often been in the news during the pandemic, the coverage has tended to focus on social care for older people. Nevertheless, a significant percentage of people who require social care are of working age and, especially in the case of people with Down’s syndrome, their needs are different from those of older people in care.
People with Down’s syndrome are living longer than ever, which is a wonderful thing, but it does not mean that a care home for a 75-year-old man with dementia is suitable for a 45-year-old woman with Down’s syndrome. I am therefore pleased that, under the Bill, people with Down’s syndrome will be entitled to age-appropriate social care.
The Bill will not solve all the challenges faced by people with Down’s syndrome when interacting with Government bodies, but it will hopefully be a step forward that leads to a marked improvement on the present situation. Once again, I commend my right hon. Friend the Member for North Somerset for introducing the Bill.
I am grateful for the opportunity to speak for the Opposition on this very important Bill. I commend the right hon. Member for North Somerset (Dr Fox) for using his precious private Member’s Bill slot on this important matter, and I understand this is his first success in the ballot in 29 years, so roll on 2050 for the next one.
The right hon. Gentleman said plenty that will have moved people who are watching as well as Members in the Chamber, particularly the comment that I will reflect on now and over the weekend, too. This Bill is not about a condition: it is about people, and it is not about charity; it is about empowerment. That really struck me, and it is important.
We have heard that 47,000 people in this country, across every nation, region and constituency, are living with Down’s syndrome. They are people with hopes and dreams, who love and are loved, and they have a right to live full lives and to reach their potential. The right hon. Gentleman is taking a major step in that direction with this Bill.
We have had brilliant contributions from colleagues on both sides of the House, and I will try to group them into themes. As this Bill is human rights legislation, as the hon. Members for North Antrim (Ian Paisley) and for Stourbridge (Suzanne Webb) and my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier) said, I share the enthusiasm of the hon. Members for Dunfermline and West Fife (Douglas Chapman) and for Berwickshire, Roxburgh and Selkirk (John Lamont) that there should be a four-nations approach in the years to come.
There were moving contributions from the hon. Members for Broxbourne (Sir Charles Walker), for Meon Valley (Mrs Drummond), for Buckingham (Greg Smith), for Carshalton and Wallington (Elliot Colburn) and for Don Valley (Nick Fletcher), who brought the debate to life by raising constituency cases. We can throw around the statistics about tens of thousands of people, but each one of them is an individual with different needs, different hopes and different dreams, and they should be treated in that way.
Alongside the 47,000 people, there are tens of thousands of families—mums, dads, sisters, brothers and cousins—who I know will have listened to the debate. My family is one of those tens of thousands, so I am especially grateful to the right hon. Member for North Somerset for giving us the opportunity to take a leap forward in the support available for people living with Down’s syndrome.
I was born in 1984, when life expectancy for a person with Down’s syndrome was about 25; it is now into the 60s. People with Down’s syndrome have basically gained a year every year for my entire life, which is wonderful and it shows the advances we can make when we prioritise the human rather than the condition, and when we are ambitious for everybody and do not define people by the challenges they live with. We know that, with appropriate support, people with Down’s syndrome can thrive at school, can work, can marry and can live full lives. We have to take every opportunity to remove all the barriers, to tackle stigma and to tackle the poverty of ambition that hold back progress in this area, and this Bill is a perfect opportunity to do so.
I note that the right hon. Gentleman has secured Government support for the Bill, so its passage is likely to be smooth. Clause 1(1) provides for the Secretary of State to publish guidance to relevant authorities to make sure they meet the needs of people with Down’s syndrome, which is a powerful tool and I look forward to hearing from the Minister about what she envisages being part of that.
Under clause 1(3) there is an expectation that the Secretary of State will consult. As other colleagues have said, that is important. It must start with individuals with lived experience, so they can tell us what change they need in their lives and what challenges they have had to negotiate. It must also apply to their families—the hon. Member for Carshalton and Wallington talked about it being a battle, which is a common theme in the stories of the families who I have spoken to and who we have heard about today. Beyond that, it is crucial that Ministers talk to clinicians, commissioners and decision makers. I am sure that the Minister will not want to be prescriptive about a consultation today, but she might set out some of its broader themes.
The schedule to the Bill highlights four areas in which the right hon. Member for North Somerset is seeking guidance to be made. I will touch on them briefly in turn. On the national health service, it is vital that healthcare services are responsive to and ambitious for people living with Down’s syndrome so that they get world-class healthcare. We can be proud of the progress made over the last few decades, but we must make sure that we are as ambitious about mental health as we are about physical health and that the progress in physical health can be matched in mental health. I hope that the Minister reflects on that in her closing remarks.
The Bill also references clinical commissioning groups. The Health and Care Bill is going through this place—we debated its remaining stages on Monday and Tuesday—so the commissioning landscape will change. Can the Minister tell us how the language will change to reflect the fact that the Bills are progressing at the same time?
To return to what my hon. Friend said about mental health concerns, when people with disabilities and conditions such as Down’s experience mental health problems that are not necessarily connected to their condition, treatment can be more difficult and it can be difficult to identify that they are developing mental health problems. Perhaps it is more a point for the Minister, but I hope that we can bear that in mind when we are looking at how we treat people with Down’s.
I am grateful for that intervention. Members on both sides of the House share a commitment and an ambition to make significant advances in the mental health of the British people. We know that there are barriers for people with the most profound physical health conditions because, traditionally, we have not looked beyond those conditions to evaluate the mental health aspect. I hope that the Bill is a good opportunity to do that.
On housing, we know that with the right support, people with Down’s syndrome can live semi-independently, so we must make sure that the right type of housing, sensitive to need, is available and distributed across the country. Has the Minister made a baseline assessment of where we are and what we might need to do better?
Hon. Members have made important points about education. At the risk of repeating more of what the hon. Member for Carshalton and Wallington said, the points about education, health and care plans were well made and I hope that they were heard. I took from his contribution that they cannot be pro forma exercises; they must be individual exercises that meet individual needs. That is the purpose of having them.
Linked to that, on employment, only 6% of people with a learning disability in this country are in employment. We should aspire to do much better. Work gives purpose, independence and dignity, and is part of the collective investment that we make in each other. Our ambition is for everybody to be in work who can be, irrespective of their challenges. We need a full strategic plan on the active steps that we can take to show employers the benefits of hiring staff with learning disabilities and the support that can be offered to help to facilitate that. It is important to understand that it is a win-win because, as global studies show, workplaces hiring employees who live with Down’s syndrome are happy and productive.
The right hon. Member for North Somerset made the point about redress, which is an important and live conversation in this country. To read across, if I may, to the Cumberlege report and the impact of sodium valproate and Primodos on children who are born having been exposed to them, those families still cannot get redress—in many cases, many decades later—without an expensive, long and hard pursuit in the courts. That system is not working. The report recommended that a redress system be set up to avoid that, which has not happened as the Government have not accepted the recommendation. It should not be happening to them and it should not happen here, so I hope that, through the Bill, we can do better for people living with Down’s syndrome and for others.
There is, of course, a great carrot for the Government in producing a workable redress system, which is that, if it is not fixed in this Chamber, it may be fixed in the other place. One way or another, however, I assure the hon. Gentleman that it will be fixed.
I am very grateful to the right hon. Gentleman for that, although I am not sure that it was a carrot as much as a stick. However, I know that noble Lords will be taking the same interest in the Health and Care Bill, and I absolutely share his confidence in that sense.
To finish, I look forward to seeing this Bill in its next stages, and we want gains to be made in the four areas in the schedule to the Bill. I would make the very important concluding point that, particularly in relation to local authorities, social care is distressed and under-invested in in this country, so if there are new responsibilities, there must be new investment to come with that. We will continue to make such points at future stages. This requires Government commitment, and it is good that we are hearing that today, but also the resources to sit behind it, and I hope we hear that, too.
I, too, congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on securing the Second Reading of his private Member’s Bill, the Down Syndrome Bill.
My right hon. Friend’s passion to help address the challenges faced by people with Down’s syndrome has been unwavering, and I want to thank him and all those who support the Bill—and many colleagues are here today—for bringing forward a Bill to address these challenges. I thank all hon. Members for their contributions, and I have really enjoyed the debate. I, too, have learned a lot, and it is such an important time for such an important debate. I also want to pay tribute to Sir David Amess, who cared deeply about supporting people with learning disabilities. He was arranging for us to have a cup of tea to discuss how we could work together to do this. Sadly, this cannot happen now, but I want today to mark Sir David’s passion for improving the lives of all those people with learning disabilities.
People with Down’s syndrome should have the opportunity to enjoy all aspects of our society, and to have access to the services and support that will enable them throughout their lifetime, and I wholeheartedly support the Down Syndrome Bill. Sometimes we are lucky enough to be in the right place at the right time, and this is one of those occasions for me, because my nephew, Joseph Gibson, is one of the estimated 47,000 people in the UK who have Down’s syndrome. Joseph is a funny and bright teenager. He loves his school, has a great group of friends and is a huge football fan, supporting Liverpool, of course, and also his local team, the O’s—Leyton Orient. Most importantly, Joseph is happy and thriving. He is learning and developing, and he demonstrates his ability, not his disability every day, as all young people and adults with Down’s syndrome do.
However, my brother and sister-in-law, Marcus and Sara, have had to work incredibly hard to access the services that have made it possible for Joseph to develop his confidence and independence. We have heard from many other families—and I pay tribute to those who are up in the Gallery today—about how difficult they have found it and how much they have been fighting that battle. I want everybody to know that through this Bill, with our support for it and everybody’s support for it in this Chamber, I hope those battles will become a lot easier. I know that today people with Down’s syndrome are struggling to access the services they need, and I have seen this with my own family. It is not right, it must change and we will change it.
I recognise that the legal duties and frameworks are already in place to ensure services are tailored to people’s needs, but we know this does not always happen for people with Down’s syndrome and their families. There is a pressing need to raise awareness of the unique needs of people with Down’s syndrome and how they can be met, so that public authorities know how to meet their existing duties and people with Down’s syndrome can thrive in their community. That is exactly what this Bill seeks to address.
For the first time, the Government will be required to publish guidance on the specific needs of people with Down’s syndrome and how to meet them. The relevant public authorities providing health, care, education and housing services must have due regard to it in carrying out their functions. This is a significant obligation on authorities, and there can only be strong reasons for not following this guidance. Importantly, people with Down’s syndrome and their families will be at the heart of this. They will be involved in the development of the guidance, as well as with those responsible for planning and designing these services.
I believe the impact of the Bill will be wide-reaching. It creates the foundation to ensure that people with Down’s syndrome stay well, receive the right education for them, and secure the appropriate living arrangements to support their transition into employment and into their old age, and to help them be a part of our society in the way that they want to be.
Why do we have before us a Bill that focuses specifically on people with Down’s syndrome, and why now? Down’s syndrome is a genetic condition. Every person with Down’s syndrome is a unique individual but they often face common health risks: almost half of children born with Down’s syndrome have a heart condition; they face significantly higher risk of becoming unwell through infection, which can be life-threatening; and they may, and often do, also need additional support with their speech, hearing or vision. Evidence tells us that people with Down’s syndrome have specific patterns of development unique to this condition. Sadly, there is an increased risk of early onset dementia. The NHS recommends regular check-ups to look for signs of that from the age of 30. I also wish to acknowledge that mental health and physical health are two very different things, and we will very much look to focus on the mental health of people with Down’s syndrome, through our mental health strategy, which we will be working on throughout the coming months.
Thankfully, people with Down’s syndrome are living longer. This is not 1983 or 1984, when the hon. Member for Nottingham North (Alex Norris) was born and when people with Down’s syndrome lived, on average, to 25 years old. In 2021, people with Down’s syndrome are living, on average, to 60—I am pleased to see that this is continuing to increase, as is the pace of increase. It is clear that this Bill is not about giving people with Down’s syndrome more rights or enhanced treatment relative to others; it is about ensuring that there is a level playing field, so that they can access the services that they are entitled to in the same way as everyone else and that their needs are understood, so that services will be developed to meet those needs.
On redress, I fully recognise that, despite the legislation, there may still be occasions when people with Down’s syndrome and their families do not feel that their needs are being met, and there must be clear, accessible and fair processes for people with Down’s syndrome and their families to raise concerns. We want people with Down’s syndrome and their families to be able to resolve concerns with authorities directly. These processes should be easily navigated and not at great cost to families. We are considering how the routes to redress are working for people with Down’s syndrome and whether they are delivering the outcomes they need, but it is essential that we get this right and I anticipate returning to this subject as the Bill moves through the House.
This is a hugely important Bill, for all the reasons I have spoken about today. I recognise that providing the right support for people with Down’s syndrome is a matter that resonates across the whole of the UK, and we have heard some contributions from those from other parts of the UK today.
Is the Minister in a position to open discussions with the Scottish Government, Welsh Government and the Administration in Northern Ireland to make sure that this is put on the agenda, either during formal meetings or informal discussions, so that the information she has can be shared across the rest of the UK and the benefits of the Bill shared also with those with Down’s syndrome and their families?
Yes, some of those conversations have happened but I will very much continue them. The scope of this Bill covers only England, but of course health, care, education and housing are also devolved matters. I know that there is a commitment to improve the outcome for people with Down’s syndrome in Scotland, Wales and Northern Ireland, including through legislation, and I look forward to working with other Health Ministers on this matter. I know that they are committed to doing that as well. I look forward to aligning policy, practice and the guidance wherever possible, so that best practice for social inclusion for all people with Down’s syndrome can be realised across the whole of the UK.
I heard a lovely story a few years ago of a young man who was living at home but was travelling to a day care centre independently on a bus. He did that for many months and then his parents got a telephone call saying, “We haven’t seen your son for a month. Where is he?” They said, “Well, he is leaving in the morning and he is coming home in the evening.” So the next morning they followed him discreetly. Halfway along the bus route, he got off the bus and walked into a builder’s merchant, where he had got himself a job. That was surprising, but perhaps we should not be surprised—we should liberate these young people to make great decisions.
I completely agree. As several hon. Members have mentioned, employment is important—to all of our lives, actually: it gives us purpose, structure, friendships and relationships. The shocking statistic that only 6% of people with Down’s syndrome are in employment was mentioned and we all must work hard to overcome that problem. That is the case for other learning disabilities, too: the figure for young people with autism is, I think, 22%, which again is not good enough. I hope to address that in my role as Minister for Care and Mental Health, whose brief includes learning disabilities.
To conclude, we are working towards an inclusive society for people with Down’s syndrome. The Bill takes one more step towards making sure that authorities are supported in delivering services that meet the unique needs of people with Down’s syndrome, and making sure this can happen consistently across the country. Once again, I congratulate my right hon. Friend the Member for North Somerset on this important work. I was happy and glad to be the Minister in place when he came forward with his private Member’s Bill and am delighted to be able to offer the Government’s full support.
I want to say a few words in conclusion. I thank colleagues not only for their support for the Bill but for the warmth of that support, including from my hon. Friend the Minister whose help throughout has been invaluable. It is clear that we have a united voice and a united purpose; now we need to have a united intent to make the aims of the Bill a reality as the process continues forward. This Bill will not be a panacea for a particular problem—no legislation ever is—but it is a key tool. It is a vital first step forward.
However, we still face challenges, as I have mentioned. On the issue of redress, there is no point in having rights unless we can demand they are fulfilled in law. This is also not just a Bill about individuals with Down’s syndrome or families with a member with Down’s syndrome; it is about what we are as a society. We talk a great deal these days about global Britain, but global Britain cannot just be about diplomacy or trade or military prowess; it also has to be about our values.
If we are able to complete the passage of this legislation before we reach World Down Syndrome Day on 21 March next year, we will be the first country to legislate on this problem, making the United Kingdom a beacon for others in the world to follow. That is what global leadership is all about.
We hold power in this place, but we also hold power to empower. People with Down’s syndrome are not supplicants in our society but full citizens who have the same right to demand for themselves quality services in health, education and social care. We have heard today that on their own and through us their voices are increasingly being heard and I urge them to increasingly use their voices. I hope they have understood from both sides of the House and from all parties today that we will be right behind them when they use their voices and exercise the powers that the Bill may bring them.
Question put and agreed to.
Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).
Pension Schemes (Conversion of Guaranteed Minimum Pensions) Bill
I beg to move, That the Bill be now read a Second time.
First, I want to congratulate the right hon. Member for North Somerset (Dr Fox) on the progression of his Down Syndrome Bill, which I very much support.
My Bill makes changes to the legislation governing the way occupational pension schemes can convert guaranteed minimum pensions into other scheme benefits. The Bill is very technical looking, but it is extremely important. It will help occupational pension schemes to correct a basic issue of men and women being treated differently in those schemes because of the impact of having a guaranteed minimum pension. It will help enable pension schemes to ensure that people do not receive less pension income than they would have received if they had been the opposite sex. In other words, it will help schemes to correct a situation that has been judged since 1990 to be fundamentally unfair.
Guaranteed minimum pensions, or GMPs, are the minimum pension that certain occupational pension schemes have to provide to their members. This applies to occupational pensions contracted out of the additional state pension between April 1978 and April 1997. It ensures that members receive a broadly similar amount of pension income in retirement as they would have received had they not been contracted out.
However, guaranteed minimum pensions differ for men and women, reflecting historical differences of treatment in the pension systems based on sex. People with the same employment history can have different amounts of guaranteed minimum pension depending on whether are men or women, even if they do exactly the same job for the same time at the same salary. It is not even as straightforward as men getting higher guaranteed minimum pensions than women; in fact, both men and women can lose out on pension as a result of their sex.
Successive UK Governments have made it clear since 1990 that occupational pension schemes need to equalise pensions to correct for these effects of guaranteed minimum pensions. In 2018, a High Court judgment confirmed that occupational pension schemes must equalise pensions to address these differences. Speaking as someone who has worked and built up occupational pensions of my own, it seems wrong that people can lose out on even a small amount of pension income purely because of these differences. Occupational pension schemes are therefore required to do something called equalisation—going back and correcting people’s overall pension to ensure that it is not lower than it would have been had the person been of the opposite sex.
I thank the hon. Lady for bringing the Bill forward. She is talking about the history of this technically complex issue, which goes back to 1990. Does she agree that the changes introduced by the Bill are well overdue and that, by bringing it forward, we will get the change that we should have had a long time ago?
The hon. Member is spot on; the change is well overdue. I will come to that, and I am sure that the Minister will answer that point too. I think the pension schemes have found some difficulties; as I say, I will come to that.
It is important to be clear that no one will have money taken away from them as a result of the Bill when pensions are equalised. If it turns out that someone is entitled to more guaranteed minimum pension than they would be entitled to if they were the opposite sex, nothing happens; that advantage is not taken away. The Bill seeks only to increase pension income for those already losing out because of their sex due to the nuances of having a guaranteed minimum pension. It is also important to be clear that this is not about giving anyone extra pension that they are not entitled to; it is simply about making sure that no one loses out on pension income as a result of their sex.
If one person has a smaller guaranteed minimum pension than another purely because the first person is male and the second female, their overall pension entitlement needs to be corrected. However, correcting people’s pensions in this way is proving a very slow process, as the hon. Member for Gedling (Tom Randall) said. The Department for Work and Pensions, working with the pensions industry, tried to cut through the complexity by offering a methodology, set out in guidance, for pension schemes to use. The methodology involved converting the guaranteed minimum pension into what I will call normal scheme benefits, using existing legislation already on the statute book.
The industry agrees that this is a sensible approach, but has pointed out that the legislation supporting the conversion process contains some uncertainties that it believes will expose it to legal risk and potential accusations of not equalising correctly. For example, the way survivor benefits are treated in the conversion legislation needs to be clarified. The industry has pointed out that legal requirements for survivor benefits when guaranteed minimum pensions are converted are not sufficiently clear. Survivor benefits are the benefits paid out to a scheme member’s widow, widower or surviving civil partner when the member passes away, and are therefore extremely important.
Equalising someone’s pension to take account of the differences that arise because they had a guaranteed minimum pension is, as I have said, very important, but schemes need clarity and legal certainty before they are able to proceed with this essential process. That is what the measures in my Bill seek to provide. Similarly, before converting guaranteed minimum pensions, pension schemes are required to get the consent of the sponsoring employer that finds the scheme. That sounds entirely reasonable, since after all the sponsoring employer has invested a lot of money in the scheme to ensure that its employees have a decent retirement income.
Unfortunately, that is not as straightforward as we might expect because the current legislation does not cover all situations, such as where the original sponsoring employer is no longer in business. As a result of this lack of clarity in the legislation, some pension schemes have held off equalising for these effects of guaranteed minimum pensions. This Bill will help with that by rectifying those uncertainties and clarifying the legislation that schemes will use if they follow the methodology set out in the Department for Work and Pensions guidance.
I should make it clear to the House at this point that the Bill does not impose any new costs or requirements on occupational pension schemes or their sponsoring employers. Affected occupational schemes have known that they need to equalise pensions for the effect of guaranteed minimum pension for many years and should have been planning accordingly. The Bill will simply help pension schemes to do exactly what they need to do to stop people losing out.
I have engaged with representatives from the pensions industry, who welcome the provisions. The industry has long lobbied for the clarifications in this Bill to be made. I should hope that all here recognise the Under-Secretary of State for Work and Pensions, the hon. Member for Hexham (Guy Opperman) sitting opposite me today; I am delighted to say that the Government have decided to support my Bill. It is good to be working with the Government to make things easier for pension schemes.
I congratulate the hon. Lady on bringing forward this Bill. She is speaking extremely well on a very technical area of pensions law. On the devolution point, she will know that Stormont has agreed to deal with the same issue, which is devolved to Stormont, through this Bill. Does she agree that that is a good example of where this Parliament and the devolved Parliaments can work together to achieve a desired positive outcome?
I thank the hon. Member; I am not sure I agree wholeheartedly with all his intervention, but the Bill extends to England, Wales and Scotland, and Northern Ireland, as he mentioned, has asked to be covered by it as well. This particular Bill extends to the whole UK and I am happy that it includes Scotland as well, unlike the Bill of the right hon. Member for North Somerset, which only covers England. As I said, it is good to be working with the Government to make things easier for pension schemes in fulfilling their obligations to their members and to ensure that benefits are paid correctly to members of occupational pension schemes.
I will not take up a lot of time, because the hon. Member for Meriden (Saqib Bhatti) is looking to give his Bill a Second Reading as well. But before I finish, there are quite a number of people on the DWP team who I would like to thank as they have helped me considerably: Narinder Clarke, Anna Smith-Spark, Gareth Thomas, Katy Marcus, Maria Burgess and David Brown. Of course I also thank my parliamentary assistant Kim Glendenning, who has helped me considerably in pulling all this together, the Pensions and Lifetime Savings Association and the Minister.
I warmly thank the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for bringing this issue to our attention today through the excellent proposals in her Bill, and for her clear explanation of this very technical matter, its impact on people and why it matters—particularly to women in the workplace, but also to others who do not experience equity and fairness. Her remarks brought to life the fact that equal pay must also mean equal pensions, and that complexity in this matter must be no excuse for not ending up with the right result for people who are due their pensions.
There have been huge changes in pensions over recent decades—certainly in almost every year of my working life—and it is welcome that compulsory pensions are now part of employment rights. However, because of those changes and people’s changing work practices, which mean that they may be in and out of several pension schemes within their working life, there needs to be even greater focus on securing the best possible protection for any changes to pension calculations before they become due. Buy-in and buy-out schemes and other pensions management processes feature more and more as companies experience increasing pressure on their own accounts, and over their accountability for the management of pensions.
I have a constituent who has an occupational pension, and he has heroically battled with referrals to the pensions ombudsman and the FCA for many years over a matter relating to the conversion of a minimum pension floor. The pension had two elements: a minimum guaranteed pension floor and an assessed projected income, in the usual way of pensions. I recall when my constituent first showed me his original pension statement, which said, in absolutely clear and unequivocal words, that the pension would not be less than a specified amount per year. Separately, the same statement expressed the projected value of the pension. Somewhat surprisingly, in my view, the Pensions Regulator has found that, in essence, because that pension statement did not use the word “guarantee”, the words “the pension will not be less than x” did not represent a guaranteed pension amount. I ask the hon. Lady and my hon. Friend the Minister to look again at the definition of guaranteed minimum pensions, particularly in schemes established before the Pension Schemes Act 1993.
I also made a referral to the FCA about mis-selling, and it said that it did not have responsibility for pension buy-out arrangements. It seems to me that we have made great strides in stopping small-print explanations—such that anyone who looked at the small print would have realised that even if the statement said they would get a certain amount, that might change—and mis-selling in many areas of financial services. There seems, however, still to be a gap in pensions protection that leaves individuals such as my constituent rightly angry and disappointed. There can be nothing plainer, it seems to me, than a formal statement saying “You will receive x a year”. That is not a qualified statement, and we must not let people get away with the small print.
My constituent was absolutely right to feel angry and disappointed in this case, but it highlights a wider issue of equity and fairness in relation to conversions from one scheme to another, and other pension changes. There must be no possibility of discrimination when it comes to converting such schemes, and greater safeguards are vital in this regard. It is not allowed to dock pay for work already done or to cut holiday or other entitlements, and stronger protection may be required for pension rights. The fact that these accrue in the future does not make them any less important than what people are paid today.
I recognise that company schemes are set up over a long period of time, and many set up a long time ago now need to be dealt with differently. Where they are problematic for companies, some may find themselves unable to operate without making substantial changes to assessing how the pensions are dealt with. Recent changes to the calculation and treatment of future pension obligations in company accounts have created additional and specific responsibilities, but also severe and significant pressures. I hope that the Minister and the hon. Member for Rutherglen and Hamilton West will agree that any such changes to pension rights must have at their heart equity and fairness. It is part of the basic corporate responsibility that we should and do expect of companies operating all such schemes.
As time is tight, I will keep this very short. I wanted to have the opportunity to thank my friend the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for all the hard work she has been doing. I welcome the Bill that she has put forward. Experts welcome the Bill, which will clarify and streamline the primary legislation on GMP conversion. It will make the whole process of equalising using GMP conversion easier. For that reason, I welcome the Bill and will be supporting it.
Today, I welcome the private Member’s Bill introduced by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier). It is very commendable. On 29 May 1970, the Equal Pay Act gained Royal Assent. With its passing, this House took an important and laudable step towards ensuring the equal treatment of men and women in the workplace and our society more generally. Since the Act’s passing and its later commencement in 1975, even greater strides, both de facto and de jure, have been taken towards gender equality, but as colleagues will know, much work remains to be done to that end. We all have responsibility as lawmakers to strive towards it continuously, through pieces of legislation substantial, modest or otherwise. The Bill can rightly be seen as a means to do that. Specifically, it will help right a historical oversight by making important clarifications in relation to pension schemes and guaranteed minimum pensions.
The historical oversight has been explained comprehen- sively —I will not go into that—but we see that it has its roots in the state earnings-related pension scheme that was introduced in April 1978, as well as the Pension Schemes Act 1993, which required GMPs effectively to be calculated on a fairly unequal and unfair basis. It has ultimately meant that the age at which GMPs could be calculated and the rate at which benefits built up were different for men and women. It is far from clear which sex received the greater total benefit as a result of this discrepancy, primarily as related advantages fluctuate over time. Whether it is men or women who benefit, such equality cannot be considered just.
There have been consultations over time about guaranteed minimum pension schemes and how equalisation in occupation schemes should be looked at. There was a consultation and proposal in 2012, and another in 2016-17. Compared with the 2012 consultation and methodology, the Department for Work and Pensions stated that there was broad agreement that the newer method was a distinct improvement and offered a relatively simple way to convert GMPs into ordinary scheme benefits, thus ensuring equality across the board and assisting the industry to deliver the change without policies being excessively onerous. That development was welcome, but concerns have continued to be raised by the industry that existing legislation is unclear in some areas, including, for example, that it fails to provide for circumstances in which the scheme’s sponsoring employer no longer exists and therefore cannot consent to a proposed conversion exercise as per the methodology.
For the full benefits of the 2016-2017 proposal on methodology to be secured in the relevant regulations, including the positive results for equality of outcomes for the sexes, these concerns must be properly addressed in legislation, and that is what the Bill seeks to do. As I understand it, the Bill will make it clear that the legislation applies to survivors as well as earners; provide for a power to set out in the regulations the conditions that must be met in relation to survivor’s benefit; provide for a power to set out in regulations detail about who must consent to the GMP conversion; and remove the requirement to notify and inform HMRC.
The Bill has been welcomed by industry leaders for covering key areas where clarification is most needed, which will in turn make the important process of equalising benefits using GMP conversion easier. With this positive impact on the industry in mind, and given the broader message that it sends out—that the equality of the sexes is important in all legislative matters, both significant and modest—I welcome the Bill, which is worthy of support from across the House.
I pay tribute to the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for bringing this Bill to the House. As she mentioned, it will introduce a well overdue change. As hon. Members have reflected, given the passing of the Equal Pay Act 1970 and the fact that this matter has been highlighted as a major issue since 1990, it is not before time.
The hon. Lady said in her opening speech that the current situation seems wrong. Well, I think it definitely is wrong. I am so glad that she has introduced this legislation, because the subject of pensions is not talked about often enough in this House. The impact that pensions can have on people’s long-term prosperity is immense, especially in old age, and too many constituents in places such as North West Durham really do feel that there is a pensions divide.
Further to what the hon. Lady is doing today, I want to speak more broadly to the Treasury Bench about pensions. The change implemented through this Bill was recommended back in 1990. Several years ago, the auto-enrolment review of 2017 recommended that auto-enrolment be extended to 18 to 21-year-olds, as people are currently auto-enrolled only after the age of 22. That change would be hugely beneficial, particularly to constituents of mine, who start work at 18 at a far higher rate than the national average. Those 45 to 50 years of compound interest on four years of extra auto-enrolment could make an enormous difference to their income in later life.
Auto-enrolment schemes currently kick in only when someone is earning over £6,000 or so a year in a job. Many of my constituents, particularly women, have multiple jobs, and may work only 10 hours a week in them.
I am grateful to my hon. Friend for making that point. I will answer in a bit more detail in my closing remarks, but let me say that I endorse entirely his argument in favour of the 2017 auto-enrolment review, and the fact that expansion of automatic enrolment will unquestionably assist those in low-income areas, including those who have multiple jobs. With respect, it will be a progressive and good thing to do, but I will address the point more in my closing remarks.
I thank the Minister for that intervention.
Some of the changes, particularly the lowering of the earnings threshold, could be introduced in secondary legislation, but primary legislation will be required to extend the auto-enrolment to 18 to 21-year-olds; I should let the Minister know that I have a date for a ten-minute rule Bill in the new year to do just that.
I very much hope that the Government will look at lowering the threshold. Low-paid women with multiple jobs in particular could be missing out on many thousands of pounds going into their pension pots. Low-paid women with multiple jobs in particular are potentially missing out on many thousands of pounds going into their pension pots due to issues around auto-enrolment. It is another inequality in the system that, as the hon. Member for Rutherglen and Hamilton West mentioned, tends to affect women disproportionately.
I just want to clarify that the rules around guaranteed minimum pensions are very complicated, so both men and women can lose out if pensions are not equalised because of indexation and revaluation. I am sure the Minister will cover that in his closing speech, but it is about two people. Sometimes women can have a higher pension and then the man will overtake it, or vice versa, because of the different ages of retiral. I just wanted to make it clear that both sexes can lose out.
That is an incredibly important point. Both sexes can lose out and that is another element with auto-enrolment. There will be men in part-time work, maybe with caring responsibilities, who will also be in a similar situation.
The Minister has been a real reformer and is reforming an awful lot. I know there is a lot more to do. I encourage him to think broadly and work with Members across the House to continue the great reforming work he is doing. It has been great to see him working with the hon. Member for Rutherglen and Hamilton West. I hope to work with him in the future as I start to push for further reforms.
As legislators, we look at the proposed legislation before us when we are preparing to speak in debates. As I was preparing to speak in the previous debate, I picked up the Down Syndrome Bill and, from the face of the Bill, was able to very quickly glean what it was about and understand its general thrust. As I picked up this Bill to prepare, however, I read that
“GMP conversion” means—
(i) the amendment of a scheme in relation to an
earner who was alive immediately before the
conversion date so that it no longer contains the
rules specified in sections 13(1)(a) and (b) and
I am glad we have got that cleared up. So I congratulate the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) on not only introducing the Bill, but bringing it to life and explaining it in a way that this pensions layman was able to understand. I feel that I have made much more progress in the last half an hour than I have in the last few days of trying to get to grips with the Bill.
As I understand it—as I say, I claim to be no expert in this field—what we are seeing today is the end of a very long journey towards equality which we should have addressed before now, but better late than never. As I understand it, the old state pension had a number of elements to it, including a contracted-out part where one could obtain an occupational pension scheme that had a guaranteed minimum pension. Because of the way that the guaranteed minimum pension was calculated, there were various inequalities, including differentiation on a person’s sex and age as existed at that time. That has been corrected to some extent following the 1990 court case—it is bizarre that it has taken so long for us to get to this stage—but I understand that the industry has a number of concerns that are still extant with the existing legislation, including how conversion applies to survivor benefits, the element that can be inherited by a member’s widow. It does not provide for circumstances in which a scheme’s sponsoring employer no longer exists and cannot consent to a proposed conversion exercise, and also in terms of requiring schemes to notify HMRC that they have carried out the conversion exercise.
I understand that the Bill will
“Clarify that the legislation applies to survivors as well as earners.
Provide for a power to set out in regulations the conditions that must be met in
relation to survivors’ benefits.
Provide for a power to set out in regulations detail about who must consent to the conversion.
Remove the requirement to notify HMRC.”
It is a technical piece of legislation, but it will, I hope, bring us to the end of a long road. I congratulate the hon. Member for Rutherglen and Hamilton West on introducing it and explaining it so cogently to us laymen, and I look forward to seeing it on the statute book very soon.
I congratulate the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) on presenting this Bill. As the public probably know, Members have huge discretion in respect of what legislation to choose when they are successful in the private Members’ ballot, and I think everyone here today is personally very grateful to the hon. Lady for using her success in the ballot to propose these measures.
We face significant challenges in the world of pensions, whether they relate to the viability of schemes, the future of auto-enrolment—which was mentioned by the hon. Member for North West Durham (Mr Holden)—the threat posed by scams or the recent growth in pensioner poverty, which is a worrying trend. However, while we invest our efforts to confront those challenges, it is only right that, when possible, we seek to take the relatively more straightforward steps that will help us to correct problems in the pensions sector, and work with the pensions industry to deliver the best possible outcomes for our constituents. That is why, I am happy to say, we support the Bill in principle.
This is a sensible Bill, designed to streamline and clarify legislation on converting guaranteed minimum pensions in order to equalise benefits between men and women in accordance with the Equalities Act 2010 and following the High Court judgment relating to the Lloyds Banking Group schemes in 2018. The hon. Member for Rutherglen and Hamilton West made a very good speech outlining that case: it might sound technical to some, but I think that she explained it very clearly.
I know from my conversations with representatives of the sector that converting GMPs into other scheme benefits on a value basis like this is the preferred way of addressing equalisation, rather than the costly and often complex dual-records approaches. However, we recognise that there are problems that have remained unresolved since GMP conversion was first in legislation. As the hon. Member for Rutherglen and Hamilton West explained, they relate to the lack of clarity on whether the legislation applies to survivors as well as earners, and the lack of provision for circumstances in which the scheme’s sponsoring employer no longer exists and is unable to consent to the conversion exercise. Her Bill addresses those problems in a simple and practical manner, and I have noted the support that it has received from the pensions industry. The head of GMP equalisation at Lane Clark & Peacock—a friend of many of us—has said that it will
“make the whole process of equalising benefits using GMP conversion easier.”
The last Labour Government made clear their belief that we needed to equalise GMPs, and the Bill is an important step towards ensuring that everyone enjoys dignity and security in retirement. We should be doing everything possible to help the pensions industry to fulfil what are now its legal duties to deliver GMP equalisation, and that includes supporting the Bill. I see no reason why Members in any part of the House would not wish to see these flaws addressed, and I sincerely hope that the Bill is able to proceed to its Committee stage. I repeat our support for it, and commend the hon. Member for Rutherglen and Hamilton West for choosing to introduce it today.
It is a privilege and an honour to address the House on behalf of the Government, and to set out our position on this small but very important Bill.
Let me first congratulate the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) on her success in the ballot, because without the ballot she could not have presented any piece of legislation. It is important for people to understand that. I also congratulate her on the massive support—of which the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) spoke eloquently—that she has managed to garner across the sector for a piece of amending legislation to address a small, discrete but genuinely important measure, and on the way in which she introduced the debate. She is right, and the hon. Member for Gedling (Tom Randall) is right: this is not simple stuff. It is technical, but it matters tremendously. She set out, with great eloquence and fairness, the background to the problem and how her three-clause Bill will address it. She brought to the attention of the House the need for schemes to make progress with the equalisation of scheme benefits to take account of the unequal effect of guaranteed minimum pensions. She set out why this issue is of paramount importance and how the House can help to clarify the legislation, and I can confirm that the Government will support the Bill.
As we all know, there are 13 days a year on which we consider private Members’ Bills. Some of those days are interesting, to put it charitably, in that the Bills will not necessarily be supported by the Government or even the Opposition on many occasions. Points of great importance are raised but the Bills do not go forward with the will of the House. However, that is not like today. Today is a very special day, and I cannot overstate the sense of genuine achievement that Members across the House should feel about the progress of the Down Syndrome Bill. Anybody who was in the Chamber to hear what was said will have been utterly moved and taken away by the wisdom and significance of the speeches and the differences that that Bill will make. We have now come to a very different Bill, but it is no less important.
I am now—I believe—on my fifth pensions Bill, Madam Deputy Speaker. As a former Pensions Minister, you were one of the architects of automatic enrolment, which my hon. Friend the Member for North West Durham (Mr Holden) so eloquently—
In a whole host of ways, the answer is yes. The state pension, by reason of the triple lock, is now £2,050 higher than it was prior to the introduction of the triple lock in 2010. There is automatic enrolment, and it would be fair for me to give a quick history of that because we have the esteemed former Minister in the Chair. Automatic enrolment was conceived by the Labour Government and the Turner commission. It was introduced by the coalition Government in 2012. Without a shadow of doubt, it has been utterly transformational. For example, 6,000 constituents of my hon. Friend the Member for North West Durham are saving the 8% thanks to the 1,580 employers in his constituency who support that. He made a very telling point about the 2017 automatic enrolment review, and given that he raised it—not for the first time— I will finish this point on automatic enrolment and the importance of this change before I go on to GMPs.
I am proud to say that the success of the provision now means that 10.5 million employees have been automatically enrolled into a workplace pension by more than 1.8 million employers. It was specifically designed by the Labour Government and brought in by various other Governments to help groups who historically have been less likely to save, particularly women, low earners and young people—this goes to the point made by my hon. Friend the Member for Hastings and Rye (Sally-Ann Hart). It has helped many in those groups to begin to save into a pension for the very first time. Workplace pension participation among eligible employees has grown to 88% overall compared with 55% in 2012. The proportion for women and young earners was less than 40% in 2012; it is now above 80%.
There is more that we can do, and we very much hope we will, and we recognise that challenges remain. Our ambition, as my hon. Friend the Member for North West Durham set out in relation to the 2017 review of automatic enrolment, is to enable people to save more and start saving earlier. Abolishing the lower earnings limit for contributions and reducing the age for being automatically enrolled to 18 in the mid-2020s will benefit younger people, the low-paid and part-time workers as they will receive contributions from their employer from the very first pound earned. I want to stress that as a Government, we remain utterly committed to those measures. I have been clear that the implementation will be subject to the learnings that take place from the 2018 and 2019 contribution increases. That is significant and it is important that that is done.
My hon. Friend tempts me to make commitments that I am unable to make. The Government have said that they will introduce the measure by the mid-2020s. It requires primary legislation and there is no doubt that there have been issues in its introduction because of the 2018 and 2019 increases. The impact of Brexit and the pandemic also clearly makes it more complicated to introduce such changes for employers.
It is still several years until the next general election, perhaps as much as two and a half years. My hon. Friend will be aware that the Government have to go through various processes to bring forward future legislation, including a Queen’s Speech setting out the Bills that will be brought forward in the third and fourth Sessions. He makes an eloquent point, however, as he always does—I assure the House that he is a massive improvement on the previous occupant of North West Durham, my neighbouring constituency—which I am certain will be heard not just on the Treasury Bench by the assiduous Whip, who is noting down his every word, but all the way in the Treasury, where I know he is making the case.
The practical reality is that the Bill of the hon. Member for Rutherglen and Hamilton West proposes a technical change. I will try to set out the position, which genuinely dates back to the 1970s and the last days of the Callaghan Government. Guaranteed minimum pensions were introduced to help employees to save affordably for an income in retirement, which is clearly a great concept. The state pension used to be made up of two parts: the flat rate basic state pension and the earnings-related additional state pension.
The flat rate state pension was simply funded through national insurance and paid at the full rate to those with sufficient qualifying years of NI contributions or pro rata for those with a partial record. The earnings-related additional state pension, also known as the state second pension or state earnings-related pension scheme, was linked to a person’s earnings. National insurance contributions were paid by an employee and their employer and gave the employee the right to an additional earnings-related state pension.
Many employers, however, were already offering their workers company pension schemes, so many people were building up an occupational pension and an earnings-related additional state pension. That was rightly thought to be overly onerous and potentially unaffordable for employers and employees. In effect, it was seen as a double provision and immensely overcomplicated.
To clarify the situation, the Callaghan Government introduced the system of contracting out and the provision of guaranteed minimum pensions in 1978. At that time, although I realise it may be hard to believe after hearing the description in the opening speech, that was considered a simplification. How they work is not simple, but I will attempt to explain it to the House to put it on the record, particularly for usage in Committee.
Employers who sponsored a salary related scheme were allowed to contract out their occupational pension schemes from the earnings-related additional state pension. Because employees in contracted-out employment were taken out of the additional state pension, the employer and pension scheme members paid lower national insurance contributions. Salary related contracted-out occupational pension schemes were required to take on the responsibility for paying their members the GMP as part of the occupational pension from the scheme.
The intention was that, on reaching retirement age, the amount of guaranteed minimum pension that the individual member would have built up would be broadly equivalent in value to the additional state pension that they would have received. However, the guaranteed minimum pension was literally that—a minimum.
Most employees would also have built up an occupational pension, but the scheme pension could not be lower than the guaranteed minimum. In addition, widows, widowers and surviving civil partners of members with a GMP received valuable survivor benefit rights—this goes to the point raised by several colleagues about ongoing survivor rights. Some of the technical details are complicated, but the crux of the idea is simple: rather than paying additional NI to the state to build up additional state pension, people built up a similar amount of occupational pension through a workplace pension scheme. The workplace pension scheme ultimately, of course, became automatic enrolment, as the Deputy Speaker, the right hon. Member for Doncaster Central (Dame Rosie Winterton), knows. The system ran in this way from 1978 to 1997.
Although the basic idea was simple, the technical details were extremely complex. I will not take the House through all the complexities, but, for example, GMPs can be subject to both revaluation and indexation. They are revalued before coming into payment to ensure they are protected against inflation, but once in payment any GMP accrued between 1988 and 1997 must also be protected against inflation, through indexation. Although revaluation and indexation are both intended to protect against the effects of inflation, the rates of revaluation and indexation are not the same, and, as the hon. Member for Rutherglen and Hamilton West set out, the reality is that men and women with the same employment history could receive different GMPs. That is what we seek to address.
So the GMPs were abolished in 1997. The whole system of contracting out was finally ended in 2016, with the introduction by the Conservative Government of the new state pension. But of course many of the people who worked between 1978 and 1997 still have a right to a GMP. We are talking about a significant number of our constituents—this is a very large figure. Some will already be retired, but some are still working. There have been a variety of court cases on this, which I am not going to go through in copious detail, but the first key one was something that has affected this House and all matters of state pensions dramatically since 1990. I refer to the European Court of Justice ruling in the case of Barber. It ruled that pensions were deferred pay and, as such, must be treated and paid equally to men and women. The Barber judgment was not specifically about GMPs but it meant that the impact of the differing rules for men and women had to be corrected. When we have come to a decision, as we have in his House on multiple occasions, about the state pension age correction exercise and the increases from 60 to 65 and 66, it can be traced back to the Barber judgment and the equality legislation that followed thereafter.
The House has already heard that the ECJ subsequently made the Allonby judgment, which enables schemes to use a scenario to work out whether someone has lost out or not, rather than being dependent on having a member of the opposite sex in the scheme to compare against. The Government are clear that in light of the Barber judgment, and subsequent decisions, including the Allonby judgment, occupational pension schemes need to equalise pensions, taking account of the effect of GMPs. Subsequently, the UK passed the Equality Act 2010, which also requires equal treatment between men and women for all pension accrued from the date of the Barber judgment. As has been said on several occasions, the Department for Work and Pensions has attempted, under successive Governments, to try to fix this problem without primary legislation. It is totally right that that there was a consultation, following which guidance was published. However, as the hon. Lady rightly set out in opening, it is simply not the case that all schemes can proceed on the basis of the guidance that has been prepared. The reality therefore is that schemes need to equalise the amount of pension their members receive to correct for the problems caused by the complex rules and the differences in retirement income these rules produce. This process is known as “equalisation”. How an occupational pension scheme corrects members’ pensions is up to the individual scheme, provided it is done properly. There are various methods of equalising that occupational pension schemes can use. However, the process can be very complicated and is specific to the individual scheme, and there are a lot of schemes. Some schemes have already felt very nervous and they have been concerned not just by the costs and the complexity, but by the judicial process that could follow and the perceived uncertainty about exactly how to undertake the process and be sure that they have met their legal obligations. As a result, as she set out, many schemes have still not equalised for the effects of GMPs.
What the Bill does is key. It makes it clear how the conversion legislation applies to people who are survivors, as well as to the earners. It also gives the Government the ability to set out in regulations the details of how survivor benefits will work for surviving spouses or civil partners of people with guaranteed minimum pensions. As my hon. Friend the Member for Berwickshire, Roxburgh and Selkirk (John Lamont)—who represents a constituency across the Border from me that includes Jedburgh and Galashiels—said, it is a piece of legislation that applies throughout the United Kingdom, and clause 2 includes specific regulations in relation to Northern Ireland that were requested by the Stormont Government.
Clauses 1 and 2 both clearly state that converted schemes must provide survivor benefits. One of the key purposes of the Bill is to make it easier for pension schemes to know the right amount that survivor benefit schemes using the conversion legislation must pay. The Bill also gives the Government the ability to set out in regulations details about who must consent to the conversion of guaranteed minimum benefits. Finally, the Bill removes the requirement to notify HMRC once a scheme has converted its guaranteed minimum pensions.
I opened by saying that debates on private Members’ Bills can be significant and serious days, and I genuinely appreciate the contributions that we have heard from a variety of colleagues. I thank my hon. Friend the Member for Stourbridge (Suzanne Webb) for her enthusiastic but pithy support, and my hon. Friend the Member for Hastings and Rye for an eloquent speech that set out in great detail her grasp of the issue. As always, my hon. Friend the Member for North West Durham is never backwards in coming forward on so many different issues, including his passion for automatic enrolment.
My hon. Friend the Member for Dover (Mrs Elphicke) raised a number of points and spoke with great experience. I am not of the view that this very specific Bill on very specific points would address the individual problems that she raised regarding her constituent, but I am happy for her to write to me about the issue and I will give her a detailed reply to confirm whether it is within the scope of the Bill. I suspect that it is not, but I want to be absolutely sure when I reply to her, which I will do prior to our entering Committee so that the House can be clear.
I cannot stress what a wonderful campaigner and asset to the House my hon. Friend the Member for Gedling is. He has made a tremendous impact through the work that he has done. It is great to see him here, and an honour and privilege to answer some of his points.
The hon. Member for Stalybridge and Hyde and I have clashed before—I think that this is our fourth Bill—but it is great that he and the House are in full support of this one.
The Department for Work and Pensions is attempting to make pensions safer, better and greener. We are doing a huge amount, including: the Pension Schemes Act 2021, with collective defined contributions, which will provide the third way of pensions; the pensions dashboard, which will be like a banking app that brings our pensions to our mobile phones, iPads and laptops, so that we have total access and knowledge of what we have; the reforms and support of defined benefit; action to prevent the investment scams that we know are out there and are trying to stop; the huge work that we are doing to develop on the environmental, social, and governance reforms that we introduced after the 2017 elections; and putting pensions at the heart of climate change by building on the work of COP26, and being the first country in the world to introduce climate-related financial disclosure, giving consumers—all our constituents —full understanding of what is being invested in on their behalf through pensions.
With respect, although this is a smaller Bill than the 125 clauses of the Pension Schemes Bill that we took through the House earlier this year, it affects a significant number of our constituents and I am genuinely keen to progress it. I can therefore confirm that it is with pleasure that I give the Government’s backing to the hon. Member for Rutherglen and Hamilton West, her Bill and the work that she has done. Excellent points have been made in debate that I will discuss in more detail in Committee. If I have missed any particular points, I will endeavour to write to colleagues in the intervening period. The Government support the Bill. We wish it well in Committee. I want to take the time to thank the hon. Lady, because it is not easy dealing with a highly technical and difficult Bill such as this. She should be very proud of the way she ensured that she got cross-party support and then introduced the Bill and outlined its provisions with great eloquence. I thank her for all the work that she has done.
I thank the Minister for his support in this important matter. He touched on the ballot for private Members’ Bills. I was delighted to be one of the successful 20; I am sure any Member who puts in for the ballot is keen to come out as one of those 20. I am grateful to all Members who have spoken today for their valuable contributions: the hon. Members for Stourbridge (Suzanne Webb), for Hastings and Rye (Sally-Ann Hart), for North West Durham (Mr Holden), for Gedling (Tom Randall), for Dover (Mrs Elphicke), for Stalybridge and Hyde (Jonathan Reynolds) and for Berwickshire, Roxburgh and Selkirk (John Lamont).
Correcting this basic issue of men and women being treated differently in these schemes because of the impact of having a guaranteed minimum pension that affects their hard-earned pension income is important. Although the Bill is small and technical, we should not underestimate its value. It should help schemes to use the guaranteed minimum pension conversion legislation to provide equality for affected pension scheme members by bringing much needed clarity for the industry that administers them. I am heartened and grateful that there is clear cross-party agreement on this issue, and I very much look forward to taking the Bill through its remaining stages.
Question put and agreed to.
Bill accordingly read a Second time; to stand committed to a Public Bill Committee (Standing Order No. 63).
Registers of Births and Deaths Bill
I beg to move, That the Bill be now read a Second time.
Every day that I am a parliamentarian is a day of great pride and privilege, but that is particularly the case today. I pay tribute to the hon. Members who have already introduced Bills, which were equally important. In particular, I pay tribute to my right hon. Friend the Member for North Somerset (Dr Fox) for his Down Syndrome Bill, which shows what can be achieved when we have cross-party support but also passionate Members of Parliament trying to achieve something good. I pay tribute to the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) for two reasons: she introduced an important Bill, but she also ensured that my Bill is not the most technical Bill presented to the House today.
It is a great privilege to speak to this Bill, because I believe it will make a tangible difference to the way we deal with two absolutes in life—births and deaths. The Bill is about modernising the administration of those essential moments in life, by making them more efficient and easier to manage for local authorities and for the public at large, while making cost savings in the process. The Bill reforms the way in which births and deaths are registered in England and Wales, paving the way for a move away from a paper-based system of registration to an electronic system.
Eagle-eyed Members, of whom there are many, will note that this is not the first time that the Bill has been presented to the House. My right hon. Friend the Member for Sutton Coldfield (Mr Mitchell) promoted the Bill in the last Session, and I thank him for his tireless work on this matter. I also thank the Minister for meeting me in the lead-up to the debate and for committing himself to modernising our registration systems so that they are fit for purpose in the 21st century. I am particularly grateful to his team for their support—namely Linda Edwards, who has been extremely helpful in drafting and addressing the issues present in the Bill. It would be remiss of me not to thank my own team—namely Ali Fazel and Ben Rayment—for their support in bringing the Bill to the House.
As in so many cases, covid-19 has had a significant impact on the delivery of registration services across England and Wales, and it has highlighted the need to offer more flexibility in how births and deaths are registered. I believe that the Bill goes a long way in improving the way we process both those pivotal moments in our lives.
Just a few months ago, I became a new father. The birth of my son was one of the happiest, most joyous experiences of my life. When it came to the registration, my wife and I decided to go together with the baby to the registration office. As I am sure Members are fully aware, childbirth and those early weeks are an exhausting experience, and the 20-mile round trip with the baby, when he started crying, felt more like 200 miles. Despite the excellent and kind staff at the registration office, I found the whole process cumbersome. On the way back, I found myself asking one question: surely there is a better way to do things? Of course, I was thinking of the registration process, not parenthood. That question is why I stand in the Chamber today.
For the purpose of clarity, I will run through the existing system and then the changes that the Bill would introduce. Currently, an appropriate informant is required to register all births and deaths that occur in England and Wales with the registrar for the sub-district in which the birth or death occurs. In the case of the birth, the appropriate informant can be the mother of the child or the father—as I recently found on my journey to the registrar’s office.
When they register a birth or death, the registrar will record all the information on an electronic system. Once the registration is complete, the system will generate a paper register page, which is required to be signed by the registrar and by the informant in the presence of the registrar. That paper record is then put into a register that the registrar keeps in a safe, and it is the formal record of the event from which all certificates are then issued.
My hon. Friend makes an important point. I can confirm that those certificates—of which I have three, by the way—will not be changed. They are an important thing that parents or, indeed, any informant, whether for a birth or death, treasure and keep safe. The Bill deals only with the administration and the process behind it.
The information is currently held in two places: in the electronic system and in paper form. In other words, as my hon. Friend just reiterated, two systems are running in parallel and creating unnecessary duplication. The changes proposed in clause 1 would remove that duplication of processes by amending the Births and Deaths Registration Act 1953—which implemented a system that had been in place since 1836—to remove the requirement for paper birth and death registers. Under my Bill, registrars would continue, as now, to register all births and deaths in the electronic register, which is a much more efficient and secure system for maintaining records of births and deaths. The electronic system is already in place, has been running in parallel since 2009 and is used on a daily basis. It is important to note, then, that we are not building new infrastructure but simply streamlining what we currently have.
I am sure that Members from all parties, but especially my fiscally-conservative colleagues on the Government Benches, will be pleased to hear that the removal of the need for paper registers and the ending of the requirement to make quarterly returns, to which I shall come in a moment, will save the taxpayer £20 million over the next 10 years. That figure is conservative, though, and the estimated savings to the taxpayer as a result of all the Bill’s measures amount to £170 million.
I have already spoken of the impact of covid-19 on births and deaths registration services. The Coronavirus Act 2020 allowed for an easing of the restrictions on the deaths registration process imposed by existing legislation, enabling the registering of deaths by telephone; however, the Act’s life is time-limited by a sunset clause that takes effect in March 2022. The industry hugely welcomed the remote registration of deaths. In the lead-up to this debate, I met the National Association of Funeral Directors in the Borough of Solihull, just outside the border of my constituency. The association informed me of the efficiency and ease of the registration of deaths via phone. The process was highly successful and showed that it could be done, and done well.
It is interesting that my hon. Friend mentioned the financial savings for the taxpayer and the new system of registration by phone or electronically. Are there also environmental benefits from not printing on tens of thousands of pieces of paper every year? Has my hon. Friend made any assessment of that, or might we consider it at a later stage?
Does my hon. Friend share my concern that many of these registrations of deaths during covid have inaccurate information on them? They say the death is caused by covid or with covid, when the nearest and dearest of the people who have died often say there was no covid involved at all. There is a lot of inaccuracy. How does his Bill address that?
I thank my hon. Friend for that intervention and I recognise that he has always been a doughty champion of parliamentary scrutiny. I do not share that concern in reference to my Bill because the reason for the deaths is stipulated by the coroner, which is outside the scope of the Bill.
It might be helpful if I point out that in many cases it would be the medical certificate of the causes of death that would set out the circumstances of the death and what particular conditions may have been involved. That is part of the registration process, but its contents are not necessarily affected by the proposed change.
My hon. Friend says the information that comes from the death certificate is transmitted directly to the registrar. That is right, but if the person who is the nearest and dearest does not know what is contained in that death certificate and is concerned about its accuracy, the death could be registered with information that the nearest and dearest disagreed with.
Perhaps it might help if I say that these changed procedures would not change the rules about what goes into the medical certificate of the cause of death. We have already moved how it is transmitted, so the process and methods for raising any concerns are not fundamentally affected by whether it is a paper register or an electronic register, which, of course, already runs in parallel to the paper system.
I thank the Minister for further clarification on that point.
I mentioned that I spoke to the National Association of Funeral Directors, and I am sure the whole House will pay tribute to the funeral industry, which, like many parts of our community, has worked incredibly hard over the past 12 to 18 months due to covid. I certainly pay tribute to funeral directors for their hard work.
Registering a death has traditionally been a paper-driven process and has often been hindered by delays in the system, which serve to increase the gap between the death and the funeral. In fact, a survey of NAFD members in 2021 confirmed that 82% of funeral directors felt that processing the forms digitally was working either well or very well, and almost 80% of respondents confirmed that they rarely or never experienced delays in the registration of deaths.
But I would go further: if we have the chance today to ease the pain of any individual who is grieving, we ought to take that opportunity. That is the opportunity I believe this Bill presents. The last thing anyone who is grieving wants to do is to make that journey—sometimes a very long journey—to the registrar to register a death. Being able to do so electronically may provide some relief in an otherwise difficult time. I reassure my hon. Friends that, as has already been mentioned, this Bill does not make any changes to the information that is to be recorded in an entry, such as who can act as a qualified informant. That remains the same in the case of a birth or a death.
A further change that clause 1 makes to current procedure relates to how information is given to the superintendent registrar. Currently, registrars are required to submit copies of all the birth and death entries that they have registered in the last quarter to their superintendent registrar through a system of quarterly returns. When received from the registrar, the superintendent registrar certifies all the entries as being true copies of the birth and death entries in the registers, and forwards them to the Registrar General. The Registrar General holds a central repository of all births and deaths registered in England and Wales, which is then completed electronically using the electronic system.
My Bill removes that administrative burden, because the move to an electronic register would make the system of quarterly returns unnecessary. Following the registration of a birth or death in the electronic register, the entry would immediately be available to the superintendent registrar and Registrar General without having to complete the quarterly return process from the paper registers.
I turn briefly to the clauses. As already explained, clause 1 removes the duplication of processes and no longer requires the upkeep of a paper register. Instead, all registrations of births and deaths will be processed on to the electronic register. The clause also ends the administrative burden of quarterly returns, as I have stated, as the electronic register will make birth and death entries available to the Registrar General and the superintendent registrar immediately.
Clause 2 makes arrangements for the equipment and facilities to be maintained by local authorities. It makes it clear that all local authorities must provide and maintain the relevant equipment and facilities that the Registrar General deems necessary for all register and sub-district register offices.
Clause 3 introduces a new power that amends the Births and Deaths Registration Act 1953 and allows the Minister to bring before the House new regulations in respect of non-paper registration. Where someone complies with specific requirements, such as the provision of identification, they will be treated as having signed the register in the presence of the registrar.
Crucially, if passed by the House under the affirmative procedure, provision may be made to include the signing of something other than the register, so that a wet signature would not be required and an electronic one would be acceptable. Those requirements would have to be put to the House in further legislation. The clause makes it clear that the Government can do so only under the affirmative procedure, which means that the provisions must be laid before and approved by both Houses of Parliament.
My hon. Friend makes a good point. I admit that I am less au fait with that Act; I know that he was instrumental in helping to make some of the provisions originally. The provision will be considered further in Committee, where I would welcome his input if he were so inclined.
Clause 4 deals with the treatment of the current paper records, which date back to 1836. It requires the registrar to keep and maintain all registers in paper form. Clause 5 brings the schedule into effect. Clause 6 provides the power to make further consequential provisions, including any changes to primary legislation which, to reiterate, would be done through the affirmative procedure only. Clause 7, the commencement clause, comes into effect the day the Bill is passed. It is also worth noting that the Bill does not require a money resolution or a Ways and Means resolution.
In conclusion, the Bill modernises our registration system and makes it more efficient. I hope that we can look back on this debate in years to come as the moment when we collectively made our constituents’ lives more convenient at a time of their lives that can often be pivotal—a moment of happiness or, in the case of deaths, of great tragedy. I urge hon. Members to support the Bill and commend its provisions to the House.
I rise in support of the Bill and I congratulate my hon. Friend the Member for Meriden (Saqib Bhatti) on bringing it forward. It will help to update our way of dealing with a process that can add to the stress of situations that are joyful at the beginning of a life and sad at the end of one. I recall that my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell) introduced a similar Bill that did not progress beyond Report for reasons outside his control. I hope that we can complete that work and deal with the anomaly.
I should declare that I do not have a registry office in my Meon Valley constituency, because such offices are in the surrounding towns and cities of Petersfield, Havant, Portsmouth, Fareham, Eastleigh and Winchester. However, this is something that can help all my constituents with the important duties they have to carry out for their families. For example, the telephone registration of a death is particularly helpful, as there are so many things to do at that very tragic time—organising the funeral, writing to people and all the other things that have to be done—so I think this will make a huge difference.
It is important that we have accurate and timely records, but it seems no longer sensible to complicate the process in the way it is with the law as it stands. I know that we have dealt with this through the pandemic with measures that have amended some of the processes of registration, but the underlying system remains the same. I want to thank all the registry office staff, who have been working so hard to help people and keep records updated, for their efforts in these difficult circumstances. We can do much more to help them manage a system fit for the 21st century with the measures in this Bill.
The duplication of paper records and online records is outdated, although the practice only dates back to 2009, as my hon. Friend the Member for Meriden said. As we have moved on to digitising much of our national archives in a wider sense, we have developed systems for securely storing data, while ensuring that it can be queried when needed. It makes very little sense, in 2021, to require all the registry offices in the country to keep thousands and thousands of register books and secure them in a safe.
However, it is vital that the public have confidence in the process. My hon. Friend the Member for Christchurch (Sir Christopher Chope) questioned that earlier, but I believe the familiarity most people have with electronic record keeping nowadays means that they will trust it. Registering a death, in particular, can be a difficult or traumatic experience for relatives. As I mentioned at the beginning of my speech, all my constituents have to travel a considerable distance to do this. I hope the Minister will consider how this Bill could make that process less difficult in the future, perhaps by making it possible to do so—remotely—online.
I congratulate my hon. Friend the Member for Meriden (Saqib Bhatti) on bringing this Bill to the House. I reiterate how important it is now, in the 21st century, to be able to register the important moments in life easily. As hon. Members have said, registering a death, in particular, is extremely distressing. A process that is quite complicated often just adds stress to what people are going through at that stage. I think that being able to register it using a smartphone would be so much better, especially given the last year or 18 months we have gone through, when people have not been able easily or confidently to go out to register births and deaths. I think we need to remember that our registrar and council teams work extremely hard, but it really seems silly now not to think about putting as many records as possible on electronic systems to make it easy and more efficient for our teams. We should also remember that, at those important times in people’s lives, this means that people could actually think about their lives, rather than about the paperwork they have to do. I congratulate my hon. Friend on the work he is doing.
I rise in support of this Bill. It is a pleasure to speak in this debate to support my fellow west midlander, my hon. Friend the Member for Meriden (Saqib Bhatti), and to continue the work done by my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell). This Bill offers a very straightforward—[Interruption.] Do you know, I changed my glasses because I could not actually read what I was saying, and I am struggling now. Excuse me, Madam Deputy Speaker.
This Bill offers a very straightforward, uncontroversial solution that I hope can command support across the House. It is a measure that both saves money for the taxpayer and removes bureaucracy. As we have heard, the Bill corrects a duplication of processes that has been going on for over a decade. There is now no need for a paper-based system for births and deaths registration, and we can move effectively, efficiently and securely to doing so digitally, as indeed we have been doing for 10 years.
The digitalisation of records has generally been a great success and continues to evolve in accuracy and efficiency as our technology does. As an example, we can take our great archives here in Parliament. The archives can be traced back to as early as 1497, when the Clerk of the House in the other place, Richard Hatton, took the very unusual decision to retain 16 Acts after they had been used to compile the Parliament Roll for the Chancery.
In this House, we were a little slow to start, or perhaps we just had more to do. We can trace the beginning of records here to around 50 years later, when journals and records were preserved. Records continued to accumulate for hundreds of years. Tragically, though, in 1834 a great fire badly affected the archives, particularly in the House of Commons. That brief history lesson aside, the Parliamentary Archives continue to look after the records of both Houses. For some time now, they have been digitalising records and documents, and that is how we should continue.
If covid has highlighted anything, it is the need to offer the public alternative ways to access services, including registering births and deaths. As Members will be aware, the Coronavirus Act 2020 included easements that have enabled registrars to register deaths by telephone and avoid non-essential face-to-face contact. However, the Act was time-limited because of a sunset clause that would take effect in March 2022. The ability to register deaths by telephone has worked very well over the last 18 months, and it has been beneficial for registration officers, the public and the funeral industry in providing a more streamlined service. It has allowed the public to make their funeral arrangements and access relevant services much more quickly at a very difficult moment in their lives.
The Bill has untold benefits, increasing access, improving and enhancing research opportunities and aiding in preservation. I hope that Members across the House agree that we should be looking to reduce bureaucracy and save money for the taxpayer in any way we can, especially right now. The Bill could save the taxpayer £20 million over 10 years, I believe, and that is equivalent to more than £150,000 every month for a decade. This simple Bill will facilitate a registration system that is more modern, more secure, more efficient and cheaper than what we have had to date, and I am happy to offer my hon. Friend the Member for Meriden my support.
I welcome the opportunity to support this important Bill. I congratulate my hon. Friend on it and on the birth of his child, who I can see is very much enjoying today’s proceedings.
We live in a digital age, and some of our Government administrative processes already reflect this, including universal credit and tax assessments. With births and deaths, however, the approach has remained paper-first, not digital-first, so I welcome the Bill’s contribution to changing that. I am sure that busy new parents will welcome the opportunity and flexibility to complete an online form—perhaps in the middle of the night when they are up feeding or settling baby—so that a very tired mum or dad does not have to trudge to the registry office.
At the other end, there is no doubt that people who are grieving their loved ones would prefer to be able to complete paperwork in the way that best suits them at their difficult time. Let us not forget that this includes parents who suffer the heartache and grief of losing their child at or before birth. Sometimes, the greatest joy—bringing life into the world—can also be the source of the greatest grief. Let us not add to that grief by unnecessary and old-fashioned ways of administration.
I hope that in taking forward these actions, I might also raise a related opportunity to help people to cope with death administration. I am talking about enabling flexibility and a facility for people to register wills online by uploading them to their individual Government accounts. Perhaps as many as 30 million adults are thought not to have an up-to-date will, or indeed one at all. That adds enormous strain to families, as well as cost to the public purse, and it causes delays in releasing estates and moneys to people when they need them. Will my hon. Friend join me in writing to the relevant Minister to ask them to consider the electronic uploading of wills, which does not fall under the register of births and deaths, as part of the modernisation of death administration?
I thank my hon. Friend. With that, I conclude by saying that this Bill is a very timely and important contribution. It is essential, as we learn and move on from the coronavirus pandemic, that we take the best of how we are adapting to people’s different ways of working and living. I very much hope that we will see this Bill taken forward and modern digital approaches being brought into this important area of births and deaths registration.
I rise to speak in support of this Bill. I begin by congratulating my hon. Friend the Member for Meriden (Saqib Bhatti) on bringing this Bill to the House this afternoon. I also offer my belated congratulations on his becoming a father again and bringing those experiences to the Floor of the House today.
I am happy to give my hon. Friend the opportunity not to get into trouble with Mrs Bhatti later.
I have to admit that I first approached this Bill with a slight degree of trepidation. As I was reading the letter from the Minister on the Bill, I saw that dreaded word “modernise”. It is not one I always look on favourably. I have a slightly romantic view of records as bound volumes on shelves that will be there forever for historians to pore over in future. I had a worry that with the Bill coming forward, there was a chance that in that drive for modernity—that desire to make progress—we were going to lose something of our history and of our past.
I was not going to speak and am sort of in favour of possibly supporting this Bill, but my hon. Friend’s speech is making me doubt it. Surely having a paper record is a safeguard if someone hacks into the digital one. He is making a good point, and I think he is persuading me to vote against the Bill.
I hope that as I develop my argument, I will begin to show my hon. Friend the error of his ways and how I have convinced myself that my Tory instincts are, on this occasion, perhaps not entirely right.
As I have read further into this matter, I have come to realise that what we have had for so long is not some handsome bound volumes on a shelf to be admired in libraries for years to come, but essentially computer printouts, as I understand it. We have not been recording history beautifully; we have just been duplicating a process—printing out what is really part of a spreadsheet almost and putting it in a loose-leaf binder that is then stored in some secure box in some office somewhere. I am intrigued to know what happens to that secure room in a sub-district departmental office somewhere, perhaps forgotten or secured to some rather dreary out-of-town facility. The glamour and the romance I thought we perhaps had with the way we recorded this important information is a completely inaccurate picture. For that reason, I now realise the error of my ways and I hope the hon. Member for Wellingborough (Mr Bone) will also come to realise that progress, digitisation and computerisation are things to which we will all, reluctantly, have to subscribe.
This issue speaks to one of the core functions of government: record-keeping of births and deaths, and knowing who is in the country. The circumstances of where people have been born and where they have died is one of the very core functions of government. Therefore, getting the Bill on the statute book in the right way may not be glamorous, but it is important to get it right and done as accurately as possible.
The other point that doubters perhaps need to hear is that we have a duplication system. It is not the case that we have bound volumes that are the record. The paper copies we have at the moment are already redundant. It appears that we have an electronic system, which is really the primary system, and the paper copies are an adjunct. They are already redundant. One might ask why we have them at this point anyway, as they have already been proven to be beyond their use. I have not had the experience of registering a birth and I am very fortunate that, so far, I have never had to register a death, but the important point has been made, and I can very well imagine and sympathise, that those experiences can be very emotional and traumatic. They happen at a time when we have 1,001 things that we need to do, and making a trip to do something very bureaucratic and burdensome is something an ordinary person could really do without. We have to remember that government is supposed to work for people, certainly at very emotionally difficult periods of their life.
Does my hon. Friend agree, for the very reasons he has just set out, that that is the most important thing? We are Members of Parliament serving our constituents and we need to simplify the process for them. That is why the Bill is so important: it will make access for registering births and deaths so much easier for our constituents.
My hon. Friend is completely right. Funnily enough, what we will agree today might have a more direct effect and a bigger impact on people’s everyday lives than a lot of the other stuff we debate. It will enable people to get on and it will make their lives easier, and that is, presumably, ultimately what we are for.
I have one final plea for computerisation. We heard about hacking and defaults in the paper system. Maybe I am wrong, but I think the “Day of the Jackal” fraud that used to be perpetrated—I am sure everyone has seen the film or read the novel—has been ended by computerisation, because the birth and death registers are now linked up. I suspect that that is one example of where the computerised system is far superior to the paper-based system. We do not all want to assassinate Charles de Gaulle, but other sorts of fraud can happen with a susceptible system. I am sure that the computerised system will be more secure and it is the future.
I have been pondering my hon. Friend’s thoughts around glamour. He has mentioned “The Day of the Jackal” and perhaps that is where he gets his glamour from. Even though we will, I hope, become digital if the Bill, which I wholeheartedly support, passes, I feel as a glamourous person himself my hon. Friend will be able to continue with the glamour while doing digital work in serving his constituents.
My hon. Friend is too kind.
As we get our civil servants to return to the computer terminal, rather than the ledger, this Bill will do a lot of good by helping to make things much easier for those in a difficult period in their lives. For that, my hon. Friend the Member for Meriden is to be commended on introducing the Bill and I look forward to seeing it progress to the statute book.
I welcome the Bill introduced by my hon. Friend the Member for Meriden (Saqib Bhatti), which seeks to make provision on the keeping and maintenance of registers of births and deaths.
In Hastings and Rye we have Hastings register office and the beautiful Hastings town hall, and I thank all staff for all their hard work, particularly over the past 18 months when their patience and empathy has been so important for so many people in my constituency.
Since 2009 all birth and death registrations have been captured both electronically and on paper. This duplication of processes is unnecessary, does not represent value for money, and is time consuming. Furthermore, this is an old-fashioned process that uses a lot of paper—and, Madam Deputy Speaker, the same might be said about this place. With global warming and too much carbon being emitted, polluting our environment, we can see the value in going green and decreasing our carbon footprint. This Bill removes the requirement for paper registers to be held but does not remove the requirement of having a lovely birth certificate.
My hon. Friend raises a valid point and I absolutely agree.
The Bill removes the requirement for paper registers to be held and stored securely in each registration district, and with records already stored electronically there is no need for on-paper storage. This will save space and eliminate the cost of that extra storage, as explained by my hon. Friend the Member for Meriden. As paper comes from trees, going paperless by utilising electronic document management systems helps cut down on deforestation and pollution, leaving more trees to absorb carbon dioxide, helping to mitigate climate change.
My hon. Friend raises a very good point and I will come to it shortly if he will continue to listen to my little speech.
It has been estimated that a single person uses up to 10,000 paper sheets in one year; imagine the quantity of paper utilised by the register of births and deaths and many other organisations, including this place, and businesses globally.
But is going paperless really saving trees? Is going digital better for the environment? Many in the paper industry dispute this, saying that those who claim going paperless is better for the environment are misleading consumers and that such claims are not substantiated by adequate research. Obviously they have a vested interest and paper manufacturing does lead to deforestation and contributes significantly to climate change. At first glance, digitisation seems to be more sustainable and renewable—electronic products are used over and over again, and information is stored in an invisible cloud—but manufacturing electronic products also leaves a carbon footprint, and energy is needed to power them. What do we do with old computers and laptops, et cetera? These are all waste, which is something we have to think about.
Although there are some environmental benefits of going paperless, there are also cost savings, as highlighted by many Members today. When it comes to being fiscally sensible, as Conservatives are, and taking care of how we spend taxpayers’ money, cost savings are vital, especially if we can provide an equal or even better service.
The Bill would remove unnecessary duplication and facilitate a more efficient registration of births and deaths. Data could be accessed immediately, giving staff and service users the ability to make faster, better-informed decisions, for example, but we need to ensure, as my hon. Friend the Member for Christchurch (Sir Christopher Chope) highlighted, that digital security is paramount for all things stored or otherwise used online.
Digital files are far easier to copy, share, hack and destroy than physical files, and we must ensure that all legislation is up to date, which is why I welcome the passage this week of the Telecommunications (Security) Act 2021 to better protect people’s smartphones, smart televisions, smart speakers and tablets, and so on, which means people can safely register births and deaths with such devices.
I have heard the points raised on hacking, but it is important to reiterate that this system has been running in parallel since 2009. My understanding is that the information is kept on multiple servers. I invite the Minister to clarify the security side, but there has never been an instance of hacking or suchlike.
I thank my hon. Friend for explaining that point. Obviously with all electronic information storage it is vital that we have the right security and that legislation is kept up to date to ensure we are always one step ahead of those who wish to do us harm.
My hon. Friend is making a powerful speech, and she is persuading me even more to vote against the Bill. She rightly says there is a problem with paper records, because they can be stolen, but there is a problem with computer records because they can be hacked. Surely the current system of having both is the right way forward, unless she can guarantee that it is impossible to hack the records.
I do not think we can guarantee that anything cannot be hacked, but the fact is this is a good Bill. It would cut costs and protect the environment, and this is something we must modernise.
The Bill would streamline processes to bring the registration of births and deaths into the 21st century, which we need to do. I am sorry to my hon. Friend the Member for Gedling (Tom Randall), but at times we need to modernise. Modernisation and conservatism run hand in hand, and that is what we are good at. The goal of the Bill is clear and achievable, and it would cut bureaucracy, saving time and resources. A well-developed, modernised and functioning civil registration system would promote transparency and safeguard efficient Government planning, including the effective use of resources. This Bill deserves the support of the House.
It is a pleasure to follow my hon. Friend the Member for Hastings and Rye (Sally-Ann Hart). I hope to be able to share with her a cautionary tale about the consequences of putting blind faith in digitalisation. Before I do so, I congratulate my hon. Friend the Member for Meriden (Saqib Bhatti) on introducing this Bill, which I think was a presentation Bill rather than a balloted Bill. However, I think he made the wrong choice about the topic for debate, because, as he has said, this proposal was debated and was the subject of a balloted Bill in the last Session of Parliament.
At that time, our right hon. Friend the Member for Sutton Coldfield (Mr Mitchell) promoted it, brought it before the House for a Second Reading debate for about three quarters of an hour and kindly offered to let me serve on the Committee, although that offer never materialised. My right hon. Friend told me, in a very courteous letter, that he thought that it was because of covid, but I think that it was just because the invitation never materialised. If it had materialised, I would have been more than happy to serve on the Committee. As I was not able to serve on that Committee, I tried to amend the legislation on Report, but unfortunately there was only one minute for my speech on 12 March.
I am grateful for that offer and shall certainly take it up, because a lot needs to be amended in the Bill. When I tabled amendments on Report last time, they were set out on the amendment paper on 12 March, but we were not able to make much progress. It disappoints me that my hon. Friend the Member for Meriden has so far shown no willingness to take on board any of the suggestions put forward in those amendments, the essence of which was to try to ensure that we still have physical, hard copy registers alongside e-registers, so that we do not facilitate fraud and corruption in our registration service.
There has been a lot of talk of those of us who believe in having a hard copy record being backwards, and those who believe absolutely in modern technology and electronic records being the great modernisers, but let me share with the House a current live constituency case, about which I have written to the Home Office, as will become apparent in the course of my remarks.
The case is of a Ghanaian citizen, who has a Ghanaian passport. He came to this country about 20 years ago and now wishes to become a British citizen; he has indefinite leave to remain, and a driving licence, national insurance number and all the rest of it. His Ghanaian passport and his driving licence correctly identify his name, which consists of one forename and two surnames. I am not going to shout out his name in the House now, because I still hope that we will get a satisfactory answer out of the Department without the need to name and shame it publicly. He applied for British citizenship on 5 May 2021, and that was approved, subject to him attending a citizenship ceremony to receive his certificate. The certificate was issued correctly with his full name—his first name and his two surnames—so he thought that everything was fine. He then applied for a British passport and the Passport Office informed him that his surname did not match his citizenship certificate because only one name had been recorded as his surname. Subsequently, he spoke to the Home Office customer service team and was advised to fill in a form and post the certificate, with any proof of his correct name, to the Home Office. He sent off all that material—including his Ghanaian passport, his driving licence and, as the Home Office instructed, his cut-up indefinite leave to remain card—at the beginning of August.
The website said that corrections to citizenship certificates take 24 working days. After three months had elapsed, he contacted me and I contacted the Home Office. On 26 November, perhaps in anticipation of this debate, I received a reply from UK Visas and Immigration that sets out a whole lot of facts that we already know and I have shared with the House, and that the requested amendment is still outstanding. It says:
“Please be assured that this is being processed…In the meantime, an application can be expedited”.
I had already explained that the lack of his documents was preventing him from being able to start work as a van driver. That remains the situation.
The point is that there was an inaccurate translation. When he got his citizenship certificate, somebody mistransposed the full names and put just one surname on his certificate rather than two surnames. That is an example of what happens when we rely on electronic records rather than the actual records, because he is now having to prove to the Home Office—and it is taking a long time, as I have been explaining—that his name is as it is set out on his driving licence and in his Ghanaian passport. He is fortunate that he still had his original records, which we assume have not been lost in the post.
That is just one example; I would like to see far more examples of digitalisation having gone wrong in computer records. As someone who spent more than 29 years in a business that was very technology-driven—I started in 1989 in a company that was all about technology and computerisation—I assure you that such instances are few and far between. I can guarantee you that it is more than likely that an error would be made in a handwritten record, not through digitalisation.
Well, Madam Deputy Speaker, you have a lot to answer for.
Handwritten errors can be identified and corrected. If there is fraud in handwriting, that can be subject to prosecution under the Forgery Act; if a digital record is inaccurate, either through accident or by design, it is very difficult to prosecute under the Forgery Act—in fact, I am not aware of any way in which it could be.
Let us return to the subject of the debate, which is the births and deaths register. The two systems have been running in parallel since 2009; does my hon. Friend have any evidence to adduce that there has ever been any mistake that would have been corrected had there been a paper record rather than an electronic one?
I do not have any evidence on that either way. The whole purpose of the 2009 regulations was that we would still have the hard-copy back-up system. Now, having put those regulations through on the basis that there would be a hard-copy back-up system, the Government say 11 or 12 years later that we do not need one, and can rely on the electronic system. That, I think, is playing fast and loose with the House. Why did the Government introduce regulations in 2009 to amend the system while still assuring the House that hard-copy records would be retained, and why, all these years later, are they seeking to abandon them? I am very concerned about that, but let me now finish the story about my constituent.
As I said earlier, I received a reply on 26 November saying that if my constituent required the return of his documents urgently he could submit a request, but I had already submitted a request for the return of his documents to the Home Office on his behalf. The letter made no reference at all to the fact that while this delay continues, and this muddle continues unresolved, he is unable to work. It is outrageous.
My hon. Friend the Member for Stourbridge (Suzanne Webb) said that this was just one example. I do not want to detain the House with a whole lot of other examples, but we do know that the hacking of computer records is prolific. It is widespread. It has led to large public companies, and indeed Government Departments, suffering severe fines, penalties and reprimands because of their inability to keep accurate data and protect themselves against hacking processes.
Even in the corridor just outside my office in this wonderful building, there is a great big poster—I think it is the only poster up there—about how we in this place are under continuous cyber-attack. If we are indeed under continuous cyber-attack, why are some of my colleagues so relaxed about it? I see no grounds whatever for being relaxed, and I think we should be very vigilant and protective of our paper record system.
The crux of the matter, it seems to me, is that there must be some great injustice in the current system if it needs to be changed. If the only reason for changing it is modernisation, we as Conservatives should not be supporting it—but perhaps my hon. Friend knows what the problem is with the current system.
That takes me on to the question of how we got to where we are now. For those interested in the background to this, let me explain that one of the former Members for the Christchurch constituency, George Rose, proposed a Bill to overhaul the registration system. He did that in 1812, and Hansard reported at the time:
“It must, he thought”—
this refers to my predecessor—
“be universally allowed, that parish registers were of great importance to all ranks and classes of people from the nobleman to the peasant; and it was highly desirable they should be regularly entered, and safely deposited. At present, instead of being kept in the house of the clergyman of each parish, they were kept in a very slovenly manner in the dwelling of the parish clerk, and he had found, as Treasurer of the Navy”—
in those days you could double up these jobs—
“numberless instances of the widows of seamen, who, from this culpable negligence, were not able to prove their marriages.”
The legislation was passed, and proved to be inadequate. That ultimately led to the 1875 Act, which is the core of our current system. Under our current system, almost all the people who are born have their details recorded. I think that, according to the latest information available, there are about 20 cases a year in which people are born without having their details accurately recorded.
Fundamental to the issue is that it is a basic legal requirement to have a birth registration, and birth registration—I hope the Minister agrees—is one of our most fundamental human rights. The United Nations convention on the rights of the child acknowledges that every child should be registered immediately after birth. We now say that should be six weeks, and we have heard from my hon. Friend the Member for Meriden and others that it can be very burdensome for someone to go off and get their child registered.
All I can say is that my daughter gave birth to a little baby girl about a fortnight ago, and she and my son-in-law are much looking forward to going to the district register office in Lymington to record the details, including the name, of their daughter. Whatever happens, that record will be on paper as well as being an electronic record. How sad that it seems to be the intent of the Government that, in the future, people who are lucky enough to have children will not be able to have the privilege of a proper written birth certificate—a hard copy holograph birth certificate. I think that that is quite an unnecessary restriction on those fundamental freedoms.
What my hon. Friend is referring to is like saying, “When I print off an email, it’s a hard copy.” It is not a hard copy; it is emailed and printed off. The Minister is talking about an electric record that can be reproduced in hard copy form. If we are talking about hard-hard copies, then, as I asked earlier, how does that fit in with the Forgery Act? Obviously, hard copies depend on having holograph signatures, and we hear that in this Bill there is the power for people to be able to register births without having to provide any signature at all unless they can send their signature by electronic means to the registration district. This is a very serious issue.
Without dwelling any more on the history of the Act, let me just say that throughout the mid-19th century, the only blip on issues relating to birth registrations, which were increasing the whole time, was the Vaccination Act 1853, which tied compulsory vaccination of all infants to their registration and gave powers for parents to be fined for non-compliance. As always happens with the law of good intentions, it ended out quite differently because as it was the local registrar who informed parents of their legal obligation to vaccinate their children, parents who feared vaccination avoided the registrar. Plus ça change, as they might say, in the context of today’s attempts to try to require compulsory vaccination for everybody in this country even if it means depriving them of their right to work in a care home or in the national health service.
The Bill itself contains a number of provisions about which I raised concerns with my right hon. Friend the Member for Sutton Coldfield when he brought it forward originally. One of those is the fact that there are lots of regulation-making powers in the Bill. I said to him that I thought it was desirable that those regulations or orders should be available in draft at Committee stage so that they could be properly examined in Committee. He said that he thought that was a really good idea. However, when we got to Committee, no such draft regulations were available.
I presume, because the Government attach urgency to this Bill and more than a year has elapsed, that those regulations and draft orders are available. I look forward to the Minister confirming that they are, but if they are not, why not? When will they be available? Why can we not see them before the Bill goes into Committee? These draconian measures give great power to the Government to set out regulations and change the existing law. It seems bad practice that people should be expected to go through a detailed Bill such as this in Committee without having any inkling of what the Government are hiding away in the regulations that are held in the relevant Department and are not being openly disclosed. I fear that that total lack of transparency is almost endemic in so much of what the Government do.
My next concern about the Bill is that under clause 1(3), section 28 of the 1953 Act, in relation to the custody of registers, would be repealed. That would remove any requirement for registration officers to hold registers. As a consequence, the hard copies that so many people look at when they examine their family history would not be available and accessible. Clause 4 states that such a repeal of section 28 would not affect the requirement that every superintendent registrar should keep records that were already in existence, provided that that did not cover records issued between 2009 and the day when this Bill comes into effect.
I was assured by my right hon. Friend and the Minister, who responded to the debate on the previous Bill, which is on identical terms, that the requirement to keep existing—or what might be described as old—records would not be affected in any way. However, when one looks at clause 6 of this Bill, one sees that the Government are taking the power to make further consequential provisions on any provision of this Act, including clause 4, which is meant to be a safeguard. That power
“is exercisable by statutory instrument”.
It includes the powers
“to make different provision for different purposes”
“to make transitional, transitory or saving provision”,
“may, in particular, be exercised by amending, repealing or revoking any provision made by or under primary legislation”—
in other words, this is a Henry VIII clause writ large—
“passed or made before, or in the same Session as, this Act.”
Under the powers in clause 6, all the assurances and guarantees on the operation of clause 4 and the safeguards under what is now section 28 of the 1953 Act are completely worthless. We, as a sovereign Parliament, do not have the power to bind our successors, but we do have the power, if we so choose, not to make it too easy for our successors to change the rules against the wishes of the people. That is why I think it is outrageous that the Government should be taking powers to change by regulation the guarantees that they say are in existence in clause 4 of this Bill. That is just the sort of issue I would like to address in Committee, and I hope that my hon. Friend the Member for Meriden will be able to give me some indication that he will accept amendments facilitating those safeguards for existing registers and records.
Another concern I have about the Bill, which my hon. Friend alluded to in introducing it, is the way regulations could be amended to change the requirement to actually sign the register. Those provisions, set out in clause 3 of the Bill, amend the 1953 Act by inserting a new section 38B after section 38A. An extraordinary lack of information is attached to what the Government intend here. It has been alluded to in the speeches of some of my hon. Friends, who seem to think it is really desirable that we should simplify what has been a solemn and historic process of registering births; I will come on later to the issue of registering deaths.
The proposed new section says:
“Where any register of births or register of deaths is required to be kept…otherwise than in hard copy form, the Minister may by regulations provide that—
(a) a person’s duty…to sign the register at any time is to have effect as a duty to comply with specified requirements at that time, and
(b) a person who complies with those requirements is to be treated…as having signed the register”.
In other words, somebody who has not actually signed the register will be treated as having signed it. Are we seriously going to legislate to create the pretence that somebody who has not signed the register has signed it and is deemed to have signed it, that, in the case of a duty to sign the register in the presence of the registrar, they are deemed to have done so in the presence of the registrar, and that accordingly in such a case the entry in the register is to be taken for the purposes of the Act as having been signed by the person when it has not been? Why are we allowing that?
What is one of the biggest safeguards of the integrity of our births register and our deaths register? It is the sanction against forgery. A sanction against forgery is nugatory if we do not require holograph signatures. My hon. Friend who so ably introduced the discussion on the Bill seems to be slightly poleaxed—I think that might be the expression—by the references to that. We have not yet had any help from the Minister on how the Forgery and Counterfeiting Act fits into this, but maybe the regulation-making powers under clause 6 of this Bill will be able to change the Forgery and Counterfeiting Act so that it applies not to actual forgery as we would know it, with people using pen and ink to change something, but to something that is deemed to be pen and ink.
My hon. Friend is making a powerful speech. Will he tell me what happened during covid? Unfortunately, I was involved in registering a death during the covid period and it seemed to me that this was all done electronically, with no signatures required. In the case I was involved in, that did not work particularly well. Does he have any views on that?
When we were discussing earlier the issue of registration of deaths, I drew my hon. Friend’s attention to the fact that I have had lots of constituents—he probably has the same situation—raise with me the fact that their loved ones were given death certificates that inaccurately reflected their covid status. In a sense, the Government are hoist with their own petard on that, because it was all part of what has been described as a “scaremongering propaganda campaign” to make it seem as though more people were dying from covid than were actually doing so by saying that they may have had covid within the 28 days before their death. Extraordinarily, if one asks questions about whether people have died within 21 days or 28 days of having received a vaccine against covid, the Government get very coy about that. I do not know why that might be, because I think that the more transparent the Government are, the more they will be able to counter the vaccine hesitancy that is an increasing problem in this country as people find out that some things relating to the vaccines are being suppressed if not fully exposed to public view. I will not go on about that, but I referred in this House a few weeks ago to my Covid-19 Vaccine Damage Bill and I do so once again, without going into any more detail about it.
There is a real problem if the Government put provisions in a Bill and then are not willing to spell out all the implications. What do the explanatory notes say about clause 3? Obviously, in the absence of anything else, one looks at the explanatory notes, but they do not help, because the notes on clause 3 just repeat the content of clause 3 without explaining what the Government have in mind. Why are we in that situation? Why has no cost-benefit analysis or regulatory impact assessment been published in respect of this Bill? We know that the requirement to do this does not apply to private Members’ Bills, but if such a Bill is, in essence, a proxy for a Government Bill, is there any reason at all why those things should not be published? Again, the Government are intent on bringing this measure forward, but wish to do so without sharing with the House and the public all the implications that flow from it and the Government’s thinking about what might happen.
I have been thinking long and hard as the debate goes on. Does my hon. Friend agree that the Bill does appear to be a Government Bill but not in Government time, so it does not have an impact assessment? For that reason alone, when we vote later, I urge hon. Members to reject it to make sure that the Government bring it forward properly for proper scrutiny in Government time.
I am grateful for my hon. Friend’s suggestion and it would be interesting to hear what the Minister has to say in response. [Hon. Members: “Hurry up, then!”] If the Minister wishes to intervene, I shall happily give way.
It is the Government’s prerogative to bring forward their legislation to the House. When they do so in the normal way, a Bill has a regulatory impact assessment, a cost-benefit analysis and so on. The Government should not avoid that system, and avoid the need to be transparent, by using the proxy system whereby a loyal Back Bencher takes on a Bill as a handout Bill.
My hon. Friend the Minister is a man of absolute integrity who has participated in almost as many Friday debates as I have over the years. In all those debates, I have not once found him wanting in terms of dealing straightforwardly with the subject matter under discussion. It is open to him to say that he will bring forward a regulatory impact assessment before we get to Committee so that we can examine it and we know the Bill’s full implications.
There is obviously no discipline or requirement on the Government to publish the impact assessment if they think that they have a majority of 80. I imagine that the Government will now bring forward the Bill as a Government Bill because my hon. Friend the Member for Wellingborough (Mr Bone) and I are expressing concerns about it and it is not making progress in the House as quickly as they might wish. If they do that, there will be a proper Second Reading, Committee and Report, which is fine.
I hope that we will then have the regulatory impact assessment in front of us and we will be able to assess what the Government have in mind and what they are hiding from us. Having had the experience in the previous Session of being told one thing in the House by my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell) about what would happen when we got to Committee, and those promises, or certainly expressions of intent, not materialising, I am very suspicious about the Bill.
People up and down the country will wonder why we are spending so much time discussing the issue of removing proper paper records of births. What will we do about all the people who will be adversely affected by that? I have another example of a constituent who is a South African citizen whose child was born in the United Kingdom and is therefore entitled to United Kingdom citizenship. To take his child to South Africa, he has to provide a hard-copy, holographed birth certificate. How will he do that in future if those hard copies do not exist?
That is another practical example of how the Bill’s provisions will adversely affect people of foreign citizenship who have children born in this country for whom they wish to have an old-fashioned birth certificate rather than one that has been put on a—
The Deputy Speaker interrupted the business (Standing Order No. 11(2)).
Bill to be read a Second time on Friday 3 December.
Business without Debate
Electoral Commission (Abolition) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
Illegal Immigration (Offences) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
General Election (Leaders’ Debates) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
Hospitals (Parking Charges and Business Rates) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
Voter Registration Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
Asylum Seekers (Return to Safe Countries) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
Plastics (Wet Wipes) Bill
Motion made, That the Bill be now read a Second time.
Bill to be read a Second time on Friday 3 December.
NHS England (Alternative Treatment) Bill
Motion made, That the Bill be now read a Second time.