Down Syndrome Bill

2nd reading
Friday 18th March 2022 Lords Chamber

Second Reading

11:09

Moved by

[Baroness Hollins]

That the Bill be now read a second time.

[Baroness Hollins (CB)]

My Lords, I thank Mencap, Learning Disability England, the Down’s Syndrome Association and the National Down Syndrome Policy Group, among others, for their engagement with me in discussion about this Bill, including many who identify as having Down’s syndrome, their families and friends. I welcome those who have come in person to listen today, including the right honourable Member, Dr Liam Fox MP, who drafted the Bill so skilfully and steered it through the other place.

Like Dr Fox, I began my medical career as a GP, but I then went on to become a psychiatrist. I declare an interest: my adult son has a learning disability and he has many friends who have Down’s syndrome. I remind the House that most of my medical career as a psychiatrist involved my working directly with people with learning disabilities, including people of all ages with Down’s syndrome. I sometimes say that the most important thing I have ever done is to keep asking the question, “What about people with learning disabilities?” The thing is, unless you know somebody with a learning disability, it probably would not occur to you to ask that question. It is so hard to keep this community of people in mind. We saw it during the pandemic on our TV screens and in debate in Parliament. Care was synonymous with care homes for older people. The protection of people with a learning disability living in the community and of people with Down’s syndrome, who were eventually shown to be in very highest risk category for Covid-19, were largely overlooked.

A few questions and challenges have been raised about the Down Syndrome Bill, and it is important that they are aired. However, I also want to instil a spirit of hope in our debate today. My mentor, Professor Joan Bicknell, who sadly died a few years ago, taught me the art of holding in mind where we want to get to. I will respond to some of the concerns that have been brought to my attention and will consider them in the context of how children and adults with Down’s syndrome, and other people with learning disabilities, are currently living.

The Down Syndrome Bill has passed all its stages in the other place and I am very pleased that I was asked to help steer it through this House. It will require the Government to publish guidance on the specific needs of people with Down’s syndrome and how to meet them, and indeed to lay the guidance before Parliament. The relevant public authorities providing health, education and social care would then have to give due regard to this guidance in carrying out their functions under existing legislation, including the Care Act 2014 and Equality Act 2010. The Bill focuses on those with Down’s syndrome as one of the most diagnosed chromosomal disorders associated with a learning disability in England. There are over 40,000 people living with Down’s syndrome, most if not all of whom have some degree of learning disability.

Some are concerned that naming a Bill after a chromosomal condition is taking things back a few decades to a time when the medical model predominated, and that a diagnosis of Down’s syndrome on its own does not tell us anything about the extent of a person’s learning disability or other associated conditions that an individual might experience. A diagnosis is important to parents, who want to know why this child is different from the one they were expecting—and, for different reasons, a diagnosis is important to health and care professionals. Of course, it is important that any diagnosis does not define the person.

Implementation of the guidance must focus on the people behind the diagnosis, but a diagnosis does provide a framework to understand the common health needs associated with a specific disorder. It is important for health and care professionals supporting people to know and recognise the co-morbid health problems that are either specifically associated with or occur more frequently in people with Down’s syndrome. These include cataracts, hearing loss, obstructive sleep apnoea, low thyroid function, increased risk of leukaemia, congenital heart defects and early Alzheimer’s disease. When I was a young doctor, I remember children with congenital heart defects who were not treated because they had Down’s syndrome; a failure to intervene reduced their life expectancy and, often, their quality of life. A friend of my son had a heart attack and died before Christmas aged just 41—such a loss.

When there is a recognisable characteristic, such as the facial features that make Down’s syndrome recognisable, two problems may occur. The first is that any behavioural changes or health complaints may simply be attributed to the already identified condition. There is the tummy ache caused by a peptic ulcer that is blamed on Down’s syndrome rather than being investigated—this is called “diagnostic overshadowing”. The second is that people with Down’s syndrome are stereotyped as being always happy, docile, eternal children and so on. As Caroline Boudet put it in the Huffington Post in 2017:

“When you have Down syndrome, the first disability you have to face is the way people look at you. It’s based on received wisdom, society conveys misleading information about this extra chromosome and what it is supposed to cause. Each of us has prejudice in mind, this shows no ill-will but just a lack of knowledge”.


The majority of people with learning disabilities do not have a known cause; they and their families do not know the answer to the question “Why?”, just as in my son’s case. Their diagnosis is learning disability of unknown aetiology. Some people have a different genetic cause from Down’s syndrome, and some acquire a learning disability in the perinatal period. Their learning disability may not be recognised as quickly as that of people with Down’s syndrome; it may be their speech or behaviour that, as it were, gives them away, however hard they try to mask the differences to be accepted for who they are.

Let us look at another challenge: that a Bill named after a condition that can be diagnosed prenatally and which could be eliminated, as it reportedly has been in Iceland, means that the Bill is not needed, and may present a challenge to women’s reproductive rights. But whatever noble Lords think about abortion, some of the 40,000 people currently diagnosed with Down’s syndrome will be around for 70 or more years. Life expectancy is getting longer. Even if no more babies were born with Down’s syndrome, every one of those 40,000 deserves a better deal than they are getting now. The Bill is simply about helping those born with Down’s syndrome to have their lives valued the same as those born without it, and to have their strengths acknowledged and their difficulties supported through an improved understanding of how Down’s syndrome can affect people and families.

The timing of this Bill complements proposals in other pieces of legislation currently being debated within Parliament. I welcome the acceptance by the Minister during debate in the other place of having a named person within each integrated care board to be accountable for the implementation of the guidance on the Down Syndrome Act. Her Majesty’s Government had already pledged in both the NHS Long Term Plan and the autism strategy that all integrated care boards will focus on autism and learning disabilities at the highest level; for example, by having a named executive lead for autism and learning disability. Just this week, the Minister in your Lordships’ House, the noble Baroness, Lady Penn, reconfirmed this commitment by saying,

“I confirm our intention that all integrated care boards should have a named learning disability and autism lead and that NHS England proposes to issue statutory guidance on this matter to assist integrated care boards. The Government are supportive of this approach and believe that learning disability and autism leads on every ICB would act as a voice for those with a learning disability and autism in commissioning decisions.”—[Official Report, 16/3/22; col. 396.]

The Minister also accepted my amendment to the Health and Care Bill, which puts mandatory training about learning disability and autism on the statute book. It is all happening this month. I believe that the passage of the Down Syndrome Bill through the other place last month and Her Majesty’s Government’s support for the Bill has assisted in getting both of these through.

I would like this Bill to go further and to include all people with learning disabilities. However, previous attempts to introduce Private Members’ Bills on learning disability have been unsuccessful, including the LB Bill and my own Learning Disabilities (Review of Services) Bill, which aimed to make provision for the Secretary of State to undertake a public consultation on the provision of comprehensive and integrated services for adults with learning disabilities. In his speech in Committee in the Commons on 26 January, Dr Liam Fox highlighted that, given the logistical difficulties in passing a Private Member’s Bill, a clear focus on one condition was needed to improve the chance of this legislation being passed. Supporting the Down Syndrome Bill is a step in the right direction and something that we can build on. In my view, it is an imperfect but pragmatic way forward and a good model for a PMB, and I believe that, if the Bill is welcomed in this House, it will indeed pass.

The Bill’s supporters expect it to set a precedent that will ultimately benefit the healthcare and support of everyone with a learning disability, not only those with Down’s syndrome. Dr Fox sees it as a bridgehead to open the door to better care and support for the whole community, but some in the wider learning disability community are worried that people with Down’s syndrome will get preferential treatment and that people with other diagnoses, despite having similar health and care needs, will be left even further behind. I ask for the noble Lord’s assurance that there will be transparency in the Bill’s implementation, specifically to ensure that resources allocated to support those with Down’s syndrome are not taken away from those currently supporting other people with learning disabilities.

We all know the financial pressures being experienced within adult social care. Many parents say the stress they experience is not about having somebody with a learning disability or with Down’s syndrome in the family; it is the constant battle with the authorities, whether over EHCPs, respite or something else. My current battle for my son is the cost of sleep-ins to sustain his independence.

It seems that it may be time for a new learning disability strategy, like the Valuing People White Paper I contributed to, with so many others, in 2001: something to tie together all the various pieces of ongoing work, including the soon-to-be-published Building the Right Support action plan, and in the light of the new integrated care systems, as well as the anticipated social care and Mental Health Act reforms. A new, overarching strategy could build on the provisions and benefits of the Bill for the wider learning disability community. I hope the Minister will be open to further discussions about the development of such a unifying strategy. Clarifying these concerns will ensure that the Bill is successful in its goal of improving the quality of life and health of people with Down’s syndrome, to raise awareness and foster inclusivity. There is such enthusiasm to get started on developing the guidance—it feels like the time is right.

In a spirit of hope, I agree with Dr Fox, who said,

“it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to”—[Official Report, Commons, Down Syndrome Bill Committee, 26/1/22; col. 5.]

people with similar needs. As awareness of the care and support that people need increases, I hope more resources will be allocated. I beg to move.

[The Deputy Speaker (Lord Faulkner of Worcester) (Lab)]

I call the noble Baroness, Lady Stowell.

11:22

[Baroness Stowell of Beeston (Con)]

My Lords, I am sorry—my speakers’ list has me at the end, but I am happy to speak now. I am ready, if noble Lords are.

I say first how impressive the noble Baroness, Lady Hollins, was in introducing the Bill today. I cannot possibly do justice to this matter, particularly following her, but I will try because I support the Bill and I want to make just a short contribution. I have no direct experience of living with, or even being close friends with someone who has Down’s syndrome, but of course I have huge respect for the battles they encounter with officialdom—indeed, for all parents who have children with learning disabilities and how they have to navigate bureaucracy.

It is hard to explain, therefore, my particular admiration for people with Down’s syndrome. It may be something special about them that elicits a smile and fondness among all of us. Certainly my connection is very tangential, and it is this: my mum had a younger brother called Stuart, who was born in 1945 with Down’s syndrome. It was not called that then, but that is what he had. He also had lots of health complications and did not live much beyond a year or 18 months. Because he was born into a family of eight other children and they were desperately poor, my nana, who was a widow at the time, considered Stuart’s passing a blessing and she encouraged the rest of the family to accept that and move on, but my mum has never forgotten him, and she has always made sure that I know that he was one of her seven brothers.

Thankfully, the world is a different place. Not only can people in situations like that of my nana rely on support not available in the past, but people with Down’s syndrome live longer and we are now seeing their potential to achieve and succeed in lots of different arenas. That brings me back to this Private Member’s Bill. I am delighted to support my right honourable friend in the other place in this endeavour. I have known Dr Liam Fox for 30 years and I know that getting the Bill as far as this stage, with unanimous support in the other place, including that of the Government, is a result of him using all his professional and political skills—and probably a dose of impish charm along the way.

What is critical about the Bill for me is that it will inform a new strategic approach to supporting people with Down’s syndrome before we encounter the situation that my nana could not have conceived of 80 years ago: a person with Down’s syndrome can not only survive and thrive, but they are living longer and, as we have already heard from the noble Baroness, Lady Hollins, are now outliving their parents. It is vital that the future we anticipate now for people with Down’s syndrome is a positive one, so I commend the noble Baroness for all that she does in the field of health and support for people with disabilities. I support her in seeing this Bill through your Lordships’ House.

11:26

[Lord Touhig (Lab)]

My Lords, when opening Second Reading in the other place, Dr Liam Fox said that the first question that people have tended to ask about this Private Member’s Bill is “Why?” Why this issue, and why now? He gave three key reasons. First, he said that there is the challenge faced by those of our fellow citizens who have Down’s syndrome and their families. The second reason concerned the intellectual development of a person with Down’s syndrome—an area, he said, where public perception tends to be inaccurate. Thirdly, he said the Bill was timely as the life expectancy of a person with Down’s syndrome is now perhaps 58 years, compared with just 13 years some time ago.

It is more than 50 years since I first became aware of the challenges facing a person with Down’s syndrome and their family. We had just moved house and one of our neighbours had a son, David, with Down’s syndrome. We became friends, and in the next few months my late wife, Jennifer, became involved as a volunteer member of the local Mencap group. She helped to organise weekly gatherings of parents and children at the Glengariff day centre near our home. At first, she thought these evenings were just an opportunity for parents to have a cup of tea and a gossip while she and others organised events for the children; but she soon discovered that, for the parents, this was a time to share experiences and problems and give mutual support, which was otherwise lacking—a much-needed moment away from what appeared to be the pressure they lived with trying to raise a child with Down’s syndrome. She would often tell me about the challenges this or that parent had in gaining education support, welfare support and, yes, understanding and tolerance from others, including other family members and neighbours.

I know friends who became frustrated having to justify seeking support for their son with Down’s syndrome. They had to wait until he was seven to get him statemented. I discovered even more when, as a local councillor, I took up cases of parents with these problems. I would go into County Hall only to be told, “Sorry, Councillor, we can’t do anything; he”—or she—“falls through the net.” But who created the net? We did—we local councils created them, we the Government did, and we in Parliament had a hand in it too.

Many of the challenges that parents faced 50 years ago, when I first became aware of these matters, remain today. My wife went on to help set up a local Gateway club, visiting sixth forms recruiting youngsters to join in the support. It was at Gateway that I met Pat and her mother and father. Pat was a bright and cheerful girl, her parents doted on her, and she was always immaculately dressed and turned out. But when her father was taken seriously ill and her mother had problems managing, she went into local authority residential care. What a mistake. We met Pat wandering alone in Cwmbran town centre looking lost and dishevelled. Pat did not know the difference between 5p and £5, yet she was left without care and support. We were shocked but, thankfully, within a week her father had recovered, and she was back at home. But the experience of what we witnessed remained with us. The system—in this case, the local council—had let a vulnerable person down. She, again, had fallen through the net.

It was no better with care in the community. Cathy, a friend’s daughter with Down’s syndrome, was encouraged to experience independent living. She was placed in a house with two elderly men—both had dementia. One person came in the morning to make sure there was some breakfast; a second person came in the middle of the day to make sure there was a midday meal; and a third person came in the evening to see there was an evening meal. That was not care in the community; that was neglect in the community. Cathy was rescued—and I believe that, rescued—by her family within a week. Again, the system had failed a vulnerable person.

Several years later—it was during the Islwyn by-election—I was knocking on doors, and I came across a family. A family of four young women who had Down’s syndrome and they lived together as a family with a house mother. Now, that is real care in the community; that is doing it the right way.

Liam Fox’s second reason concerned perception and, having spent 27 years working in newspapers and publishing, I can tell you that in my experience perception is more real than fact in what most people believe to be the case than what actually is the case. The wrong perception about Down’s syndrome can also feed ignorance, prejudice and stupidity.

I found that was the case, even with the National Health Service. Some years ago, I served as chair of the All-Party Parliamentary Group on Down Syndrome. I listened in shock to a mother who related her experience of ignorance. She was at the bedside of her young son who was recovering post-op from minor heart surgery. The child appeared distressed, and she became alarmed, and she called the nurse, and the nurse came and looked and told her, “Don’t worry, dear. He is Downs, and they do not feel pain.” Do not feel pain!

Our committee then went on to take further evidence from a young couple. The wife had just given birth to a child with Down’s syndrome, and they were not aware that this was going to happen so they were coming to terms and trying to work out how they would come together and work as a family, and in breezed a doctor. When they spoke about their concerns, and said they were not certain what to do, the doctor told them not to worry, to leave that one here and go home and have another one—ignorance, prejudice and sheer bloody stupidity, all rolled into one.

Finally, Liam Fox’s third reason for introducing this Bill was that it was timely and necessary, pointing out that, in his lifetime, life expectancy for people with Down’s syndrome had increased from 13 years to 58. Timely is right—right in that, no matter how long or how short out lifespan, all have the right to quality of life. Who in this Chamber would deny that? We want it for ourselves—we do. Do we not want it for our children? Of course, we do. This Bill is another step, another building-block, in ensuring a person with Down’s syndrome has just that: quality of life, a life lived to the full in dignity and respect, respect for their human rights. The human rights of a person with Down’s syndrome are no less important than yours or mine. Their lives deserve to be lived, respected, honoured, defended and yes, indeed, cherished by all of us.

11:33

[Baroness Jolly (LD)]

My Lords, I support the noble Baroness, Lady Hollins, and all that she has said today and, indeed, all of her work. I should be brief—only a few minutes—but the alternative, more in-depth look at this would take rather longer than the powers that be would allow. I would like to thank Dr Fox for the time he spent in the briefing, which was very helpful.

In the standard way, I have no interests to declare. But in a rather sort of non-Parliament way, I have two interests that have informed the way I think about this area and this debate. Like many others, when I was much younger, I had contact with a family member—my cousin, Daniel—who had Down’s syndrome. Like many people with Down’s syndrome, he sadly died as a child when he was six, leaving my uncle and aunt totally bereft. But I can certainly remember him as a happy, cheerful child who is very much missed by the family.

Secondly, for three years I was chair of one of England’s larger providers of services for people with a learning disability. There, I began to understand the issues about the care of an adult with Down’s syndrome and the many areas to be considered in their care. Although not interests in the parliamentary way, these two points have coloured what I want to say about this Private Member’s Bill.

This, of course, in the main is an excellent Bill—clear, concise and with the main bases covered. Thinking about the relevant authorities, we should consider the services delivered by the Department of Health and Social Care, the DfE and the Ministry of Housing, Communities and Local Government—which now goes under the somewhat snappier title of the Department for Levelling Up, Housing and Communities.

I wonder if the Minister could tell the House what areas he thinks the Department of Health and Social Care would have to augment, were this Bill to be passed? Would the Minister tell the House what conversations he has had with officials about this Private Member’s Bill? What changes would need to be made in the unlikely event that it finds its way on to the statute book? We all know it will not, but for the 40,000 people who have Down’s syndrome and their families and carers, could the Minister tell me when was the last “in the round” look that the department made of services for and care of people with Down’s syndrome? When did that last take place? Who is responsible in Whitehall for ensuring they are appropriate? Is Down’s syndrome treated separately from learning disability, or are decisions made about those with learning disabilities taken as all right for those with Down’s syndrome?

One of the things that my time chairing a learning disability provider organisation taught me was that those we supported really valued being involved in decision-making. I discovered that meeting the needs of someone with Down’s syndrome was best done by involving the individuals in the decisions being made about them, along with parents and family. The Bill is silent in its guidance about involving the person with Down’s syndrome in decisions about how they live, with whom and where. We often fail to do this and, were this Bill ever to reach Committee, I would like to lay an amendment which would ensure that people with Down’s syndrome—or any of the other learning disabilities—could say, with their hand on their heart, that “No decision is ever made about me without me.” We would not fail to involve people with a physical disability in legislation relating to them. The Secretary of State should make a provision to involve people with Down’s syndrome—or any other learning disability—in any guidance written by the department.

11:37

[Baroness Bennett of Manor Castle (GP)]

My Lords, I must begin with a tribute to the noble Baroness, Lady Hollins, who works so hard for people with learning disabilities and other disabilities in your Lordships’ House, as I see in person very often, and I was privileged to see recently in a late-night—or possibly early-morning—stroll up Whitehall during the Health and Care Bill to get some more information one-to-one.

The right honourable Liam Fox—I note he is listening to our debate today—said of this Bill in the other place:

“it is about people who deserve the same ability to demand the best health, education and care as the rest of our society.”—[Official Report, Commons, 26/11/21; col. 579]

Of course, nobody could disagree with that aim, but it is true for people with other chromosomal abnormalities, people with learning disabilities and many other people with special needs in our society. The fact is that our society is profoundly discriminatory. People are disabled by the barriers society puts in their way. Physical barriers, as we have just heard from powerful testimony from the noble Lord, Lord Touhig, are attitudinal barriers which are frequently still, sadly, awful.

There are 1.5 million people with learning disabilities in the UK and about one in 50 babies are born with a chromosomal abnormality. As the noble Baroness, Lady Hollins, has often drawn the House’s attention to, men with a learning disability have a life expectancy of 66 years—14 years below that of the general population —and females 67 years, which is 17 years below the general population, reflecting some of that discrimination that I referred to.

It was not my intention to speak on this Bill—your Lordships’ House may know that I have rather a large number of Bills on my plate—but I received large numbers of representations from people concerned about it, which is what led me to be in your Lordships’ House today. Some of those concerns reflect what the noble Baroness, Lady Jolly, just said. When I looked into this, I was quite surprised that in a press release about the Bill, the Down’s Syndrome Association said that it had not been

“invited to be involved in the development”

of the legislation. That very much provoked me to think of the phrase that the noble Baroness, Lady Jolly, just used: nothing about us without us. If the noble Baroness is going to table an amendment along those lines, I would certainly be interested in supporting it.

The first concern that families and groups of parents with children and adults who have Down’s syndrome have come to me about is that the Bill will have no substantive effect on the rights and lived experience of people with Down’s syndrome and their families because the duties in it are narrowly drawn; demand very little of public bodies; crucially, attract no new funding; and provide no meaningful mechanisms for enforcement or redress.

There is a really serious concern that the Bill implies that a diagnosis predicts how a person’s needs should be best met, rather than people’s personal, individual and unique needs, characters, gifts, talents and aspirations, and the idea that it is possible to generalise about a highly diverse group of people based directly on diagnosis alone. The families have said to me that they are concerned that this approach risks reinforcing rather than overcoming prejudice and discrimination, while undermining decades of progress in moving towards personalised support across the fields of education, health and social care.

I note—the noble Baroness, Lady Hollins, addressed this in her introductory remarks—that it has been argued that the Bill offers a model for others to follow to address other conditions and people in other circumstances, but it is very hard to imagine that we could see a whole procession of Bills addressing people with different health needs and disabilities along this model. Surely it would be better to make sure that people’s needs as an individual, whatever diagnosis they might have, are addressed.

At this point, I should declare my position as vice-chair of the LGA and NALC. The crucial issue here, surely, is resources. I am aware that the Bill was put forward by the noble Baroness, Lady Hollins, but there are questions I would like to put to the Minister if the Government are backing it. How do we know that it will have the intended impact? How will it be enforced? We talked about ensuring that there was full consultation on the guidance, but what role might Parliament play in producing the guidance? Crucially, without further resources, how could public bodies conceivably implement this new guidance?

I come to one final area of concern, looking at the discussion of the Bill in the public realm and the way it has been discussed in the press and online, about what people advocating for it or pinning their hopes on it believe it is designed to achieve, particularly around issues concerning maternal health and reproductive rights. The Bill, of course, very directly addresses the needs of people with Down’s syndrome, which legally applies only to people who have been born and therefore does not relate to the needs of pregnant women who may have received an antenatal diagnosis but do not themselves have Down’s syndrome. So I ask either the Minister or the noble Baroness, Lady Hollins, to confirm that, in the Department of Health and Social Care, the intention of the Bill is not to plan to develop new guidance or amend any existing guidance concerning antenatal care and existing reproductive rights as a consequence—save as it may apply, of course, to the needs of women who have Down’s syndrome.

11:44

[Lord Farmer (Con)]

My Lords, I rise to support the Bill and congratulate my right honourable friend Dr Liam Fox, who is with us today, and the noble Baroness, Lady Hollins, on bringing it to this House. I also thank the Minister for his correspondence to me on this legislation, and I take this opportunity to congratulate him more widely on reaching the end of Report on the epic Health and Care Bill yesterday at 2.15 am, when I was with him. It was an early baptism of fire after entering this House, and a much prolonged one at that. The Bill and Front Bench teams, including my noble friends Lady Penn and Lord Howe, are also to be commended for their energy, stamina and courtesy—as, of course, are the Opposition Front Bench teams. It was a marathon.

I confess to mixed feelings about this Private Member’s Bill, despite its laudable aims, because with the mapping of the human genome, many other genetic disorders have come to light. Though not as common as Down’s syndrome, they are not incredibly rare “black swan” events in our population, although they can seem so to the individuals and families coping with them. As I understand it, the Bill seeks to educate the public particularly about the opportunities technology now avails individuals with Down’s syndrome to have a better and longer life than many realise is possible; to ensure that Down’s syndrome is properly considered in service provision across different sectors; and to plan for future impacts of longer life expectancy for people with this condition. All these aims are just as relevant to individuals with other genetic disorders, yet they can struggle additionally to those with Down’s syndrome because there is still so little public and clinical awareness of the ramifications of their chromosomal abnormalities, hence my ambivalence. What guarantees can my noble friend the Minister provide that the Bill will not widen this inequality further?

I will illustrate the complexity of what these genetic conditions can entail by focusing on the second most prevalent after Down’s: 22q11 syndrome, the APPG for which I am a vice-chair of. But there are of course others, such as Prader-Willi syndrome and Smith-Magenis, or 17p, syndrome. 22q syndrome is caused by a genetic deletion on the longer q portion of the 22nd chromosome, meaning a small part of genetic material is missing from the DNA in every cell of the body. It is the most common microdeletion syndrome in humans. In most cases, it occurs de novo in a child’s very early development, but it can be inherited. Doctors have struggled to diagnose it due to the very wide variety of symptoms and conditions which arise from the same missing genetic material. It was only relatively recently discovered to be the one root cause for multiple diagnoses, including DiGeorge syndrome and velocardiofacial syndrome.

22q manifests itself in nearly 200 different physical and mental health issues spanning the cognitive, endocrinological, behavioural, immunological, cranio-facial, sensory and cardiac. That can mean hearing and speech problems, facial abnormalities, scoliosis, calcium deficiency, eye problems, seizures and constipation, with poor development of various bodily “tubes”, as I will describe in a moment. Some 50% to 85% of those with 22q have congenital heart disease, 10% have cleft palate, 30% have kidney anomalies, 1% have severe immunodeficiency and 60% to 90% have psychiatric disorders.

One family whose baby was diagnosed within a year of his birth describe 22q as the Pandora’s box, because they were never sure what new medical nasty would emerge. He nearly died at five days old because the end of his bowel had not formed properly, and sepsis took hold when he could not void meconium. Thankfully he survived, but twice a day the exhausted parents had to wash out his bowel using tubes and suction; I will not dwell on that. After several months, he was admitted for an operation on his bowel, but the anaesthetist was concerned that his throat was as narrow as a newborn’s. Basically, it and his larynx had not formed properly either, which explained why he never cried but made slightly strangulated coughing noises.

Again, thankfully, he was admitted to Great Ormond Street Hospital, where they widened his throat and removed the laryngeal web which would have prevented him ever speaking. Although his parents had to travel a long way within the UK to get there, they met families who had come from other countries for the same operation, because Great Ormond Street is a centre of excellence. We cannot take such provision for granted. His heart and the vessels to and from it were also giving the many medics looking after this little boy cause for concern, and they decided to do some genetic testing. To cut a long story short, he was diagnosed with 22q.

He continues to risk becoming dangerously ill when there are colds about, due to his compromised respiratory system, so the pandemic was a tough time for his family, and he will probably always have to attend a special school because of cognitive delay. Facially he looks quite normal to the untrained eye, but his life and his parents’ experience have been anything but.

Every 22q child presents in a completely unique way, and many do not get diagnosed until much later in life because of the variability in severity. Hence one of the top asks from Max Appeal, a support group for parents with 22q children, is that 22q be part of the newborn heel-prick test. A 2017 study in the Journal of Clinical Immunology concluded that

“the clinical characteristics, diagnosis, management, and treatment of 22q11.2 Deletion Syndrome have been shown to meet the criteria for new-born screening programmes and support the need for earlier diagnosis.”

Far less prevalent conditions such as cystic fibrosis are included, but they, like Down’s syndrome, are in the mainstream of medical consciousness. Without screening it is very hard to determine prevalence accurately, although some studies estimate that one in 2,000 children are born with it, which would make it half as common as Down’s syndrome.

I mentioned my ambivalence, but my optimistic ambition for the Bill is what has been mentioned already: that it will provide an awakening for the Government and the public to this world of genetic disability. The medical establishment also has some catching up to do although, thanks to grass-roots pressure from organisations such as Max Appeal, significant progress has been made in treatment and raising awareness, which is of course what I am trying to do right now.

What guarantees can the Minister give that this Down Syndrome Bill will lead to a floor of provision for genetic disorders on which to build, not a ceiling on our aspirations for helping these unique and uniquely precious individuals and their families cope and indeed flourish despite the lifelong implications of immutable chromosomal disorders? In the meantime, I welcome the Bill and support its passage through the House.

11:53

[Lord Wigley (PC)]

My Lords, I wish to speak in support of the Bill. I thank the noble Baroness, Lady Hollins, for introducing it to the House in such a comprehensive manner and I thank Dr Liam Fox, of course, for having introduced it in the first place in the House of Commons and for steering it through to get this far.

I draw attention to my registered interest as a vice-president of Mencap, which very much welcomes the Bill and the powers that it gives to create new guidance to reinforce the provision of services at local level. Perhaps I should also mention that we lost two boys with severe learning disabilities, although not with Down’s syndrome—rather, they suffered from one of the mucopolysaccharide group of disorders. They died at the ages of 12 and 13. We too had to make the 500-mile round trip to Great Ormond Street on many occasions, and I pay tribute to the tremendous work that is still being done there.

I have spoken many times in the House about the level of health inequality suffered by people with a learning disability. A report by Bristol University in 2020 showed that, on average, men with a learning disability die 23 years younger than those without such a disability, and women die 27 years younger than their peers in the population as a whole. They die not because of the direct impact of their specific disability but from other conditions which their disability prevents being adequately addressed. I served as a member of a special inquiry into this some 15 years ago. All sorts of promises were made at that time about improving this appalling situation, but here we are in 2022, still unable to close the gap.

This basically comes down to ensuring that everyone, whatever their learning disabilities, can access the services they need. This is the crux of this short and straightforward Bill. It is not a Bill which imposes new rights and new support on people with learning disabilities; it is to ensure that these people actually get the services to which they are entitled and which they should be getting under existing legislative and executive provision. The fact that they are falling through the net and are not getting such support is the basis for putting forward this short piece of legislation.

The Bill requires the Secretary of State to issue guidance to a number of public authorities with regard to the additional steps which they should take to ensure that they are meeting the needs of people with Down’s syndrome. The public authorities who come under the provisions of the Bill are those related to the National Health Service, social care, housing, education and youth offending. By using the mechanism of guidance, the Bill latches on to a lever which Secretaries of State already have for driving forward the policy of their Government, but it extends the application into a specific sector.

The Bill applies to England only, and noble Lords may well ask why I am involved. It is for two reasons. First, every step forward which helps people in one part of these islands can be a catalyst for similar progress in other parts, as was the Wales plastic bag legislation. Secondly, if the Bill can help people with Down’s syndrome in England, why on earth should I not be supporting it?

The Bill has been criticised for addressing Down’s syndrome people specifically, when there are many other conditions generating learning disabilities which will not be covered. I would merely respond that it is better to get this provision rolled out now and to use it as a lever that may secure similar improvements for other groups of people with learning disabilities. Indeed, the ministerial guidance provided by the Bill may act as a trigger for other groups as well.

Others will argue that a small Bill such as this is a wasted opportunity for getting a major piece of legislation to support people with disabilities on to the statute book, and they usually point to Acts such as Alf Morris’s Chronically Sick and Disabled Persons Act 1970. Well, it is great if an MP can get the top slot in the ballot and then gets the support of a Government willing to provide the necessary money. I came across that problem in taking through the Disabled Persons Act 1981; it was modest and limited in its scope, but it opened the door to the Tom Clarke Act of 1986, and the momentum generated undoubtedly contributed to the public mood, which demanded the Disability Discrimination Act 1995. We should never disparage small steps, as they move us forward, even in a limited way, and they can pave the way for more ambitious legislation in due course. So I am delighted to support the Bill.

11:58

[Baroness Uddin (Non-Afl)]

My Lords, it is an honour to follow the noble Lord, Lord Wigley. His words echoed not only throughout the Chamber but throughout the country with mothers, families, and the individuals on whom I hope this legislation will impact.

I also support the Bill. It is a privilege to be able to take part in this debate where there is so much consensus across Parliament. I am grateful to the right honourable gentleman Dr Liam Fox in the other place and to the noble Baroness, Lady Hollins, who has long been a heroic champion of disability rights. I remain in awe of her continuous work.

I am blessed with a 43 year-old son who lives with autism and learning disabilities, and the words of the noble Lord, Lord Wigley, touched my heart. My family has long battled with serious challenges within services. If I spoke about the experiences 40 years ago I would still be wailing, as I wailed then, battling institutional discrimination against disability rights. We as a family long resisted my son being called mad, bad or handicapped, as once was acceptable, despite legislation being in place.

I also have a son who recently became an amputee—a traumatic and heartrending experience. I cannot really say that I have learned how best to describe the impact of his traumatic incapacitation and disability as yet. I agree with so many parents and activists who have taken time to write to remind me that language is very important, and that there are no hierarchies of disabilities or of the experiences of people who are born with different abilities. So many of our loved ones face a level of discrimination and struggle for equity and social justice, even with the basic rights of education, housing, employment and social care provision. Noble Lords have already spoken eloquently and described some of the discrepancies in services and provisions, so I will not go into that. Nevertheless, although we have mostly developed more respectable language, shortfalls remain the norm in all institutions. They should uphold the dignity and equality of people who live with disabilities.

As has been said, the Bill would require the Secretary of State to give guidance to relevant authorities to meet the appropriate needs of people with Down’s syndrome, have due regard to and require consultation with people with Down’s syndrome, and, more importantly, publish a report and lay it before Parliament. However, all that could be just rhetoric and written reports if the Government do not take it seriously and local authorities and all the health and social care institutions are not mandated to do so.

The Bill has rightly received positive responses from many organisations, with the aspiration that it will support provisions, including health, education, employment and care needs, for people with Down’s syndrome throughout their lives. It is expected to pave the way for more equitable services for people with Down’s syndrome, which may result in greater parity of services and care available to other people with disabilities who benefit from statutory care provision.

It would be remiss of me not to bring the House’s attention to the discussion on the Bill which has highlighted the worrying level of disparity experienced by people who live with disabilities. Regardless of the fact that many have achieved a high level of education, it appears to make no difference to their life chances, including access to employment. I know that; I am not just speaking from the reports and representations I have received. I have worked in the profession as a social worker and with families and small NGOs in my locality. I have direct experience, so these are not just words from reports; I am highlighting the experiences of many others who are unable to be in the House or the other place.

Only around 6% of people with learning disabilities are in employment so far; we have not achieved beyond that. We have a long way to go. The Down’s Syndrome Association, the National Down Syndrome Policy Group and Mencap are the experts and, while welcoming the legislation, they are rightly asking how the Government will address the worrisome statistics on outcomes for all people with disabilities with regard to education, employment and so forth. For example, how will the postcode lottery of statutory and voluntary-led services be addressed?

From my personal experience over 40 years, I know that mainstream schooling for children who need specialist support remains the purview of the most elite parents. Despite the fact that I sit in this House, I never had the privilege of being regarded as one of the elite who can advocate for my son, even all those years ago. Whenever I spoke, I was regarded as if I was so mentally challenged by the fact that I was an Asian woman and my firstborn was a child with learning disabilities that, somehow, that scarred my mental ability to fight for the justice that he as an individual deserved. So many people still say that that is the case, and that is something that all Members of your Lordships’ House and the other place should be concerned about. Given the many decades of inertia that have persisted in local health authorities—supposedly working in the best interests of the individual child—how will the legislation bind statutory services to their obligation to provide the necessary resources and funds?

I am pleased that Dr Liam Fox in the other place and the Down’s Syndrome Association have raised important and outstanding matters of the deepest significance for these debates, so that we can meaningfully impact the lives of people with Down’s syndrome. This legislation is indeed an important milestone, and I agree entirely with the noble Lord, Lord Wigley, when he asserts that it will be a small stepping-stone to much advancement on disability rights. We all hope that the Bill will enable more people with Down’s syndrome to live with dignity and respect.

As has been stated, the House should know that Mencap supports and welcomes the Bill. It feels it could be the foundation for legislation to support people with learning disability more widely and sees this as a defining moment to set up a bigger conversation that will, hopefully, lead to a cross-government learning disability strategy.

Alongside the Down’s Syndrome Association and the Down Syndrome Policy Group, the LGA is seeking urgent government assurances that they will complete their ongoing review of the special educational needs and disability system, setting out reforms and increasing mainstream inclusion, providing councils and schools with long-term certainty of funding to meet the needs of all children, and giving councils the power to hold education and health partners to account if their provision to identify and support children with SEND is inadequate. I hope the House will agree with the LGA; it has been more than a decade since the last strategy, Valuing People Now, was published. With all this good will in place, what plans are afoot to formulate a new national disability strategy?

Finally, in recognising that there are parents such as me from what is termed a minority group, although our children are ethnically British in every way, one report after another of late has finally conceded that there is discrimination and disparity across all institutional services for minority groups. In the experience of people with Down’s syndrome and their families, who are not a homogenous group, discrepancies have been highlighted by groups such as Include Me TOO, a member organisation that advocates on behalf of ethnic-minority families who care for loved ones who live with disability. The organisation feels totally excluded from all aspects of decision-making in the mainstream, and it is clear that many of the family members seeking the organisation’s support and advocacy continue to feel disadvantaged by their gender, race, ethnicity and faith while journeying through statutory and NGO services. That has left many scarred, with lifelong adverse impacts on their life chances, and negative outcomes for countless individuals and broken families. It has caused untold long-term physical and mental health damage for individuals with disability and impacted on their carers’ and loved ones’ well-being.

I ask just two quick questions. How will the diversity of people with Down’s syndrome and their families be recognised in the legislation and the guidance? How will the Government ensure that the voices of the individuals and NGOs that are consulted come from wide-ranging backgrounds and reflect adequately the needs of gender, race, cultural and faith aspects of people with Down’s syndrome? Will the Minister commit to leading a robust equality impact assessment before commencing the development of guidance to inform the process, and ensure that the consultation and guidance address people with Down’s Syndrome in all their diversity?

12:09

[Baroness Neville-Jones (Con)]

My Lords, I speak on this Bill because of my membership of the all-party group and my strong interest in genetic conditions. I have a godson now reaching maturity who has a genetically-based severe learning disability which is not Down’s, and whose parents have had to fight hard for the whole of his life for access to the provision of services, particularly social and educational, which the rest of us take for granted will be available to us as and when we need them.

As the noble Baroness, Lady Hollins, said in introducing the Bill, its aim is to improve the provision of services and bring to an end discrimination in practice against individuals with Down’s syndrome—of course, we know that it is not actually legal to discriminate; the issue is what happens in the real world. And who would not wish to see this happen? If you or your child has Down’s syndrome, the Bill offers real hope. However—I am afraid that there is a however—this prospect has given rise, not in this House, where I recognise that the Bill has received a warm welcome, but outside to divergent and worried views about the Bill’s merits and about the desirability of it reaching the statute book.

On the one hand, there are those who argue—if I might say so, I think that the noble Lord, Lord Wigley, represented this view—that, while the Bill is exclusively concerned with Down’s syndrome, it will in practice open the door to people with other genetic conditions getting better treatment than is currently the case. “Better to start somewhere than do nothing”, especially as, in a Private Members’ Bill, the scope has necessarily to be narrow. I do not dismiss any of these considerations, nor do I dismiss the argument, but in a hard world it does not offer any guarantees of success.

On the other hand—and I am afraid that this is where I tend to stand—there are those of us who see the great danger that this Bill, which uses the device of guidance which has to be followed, to give preference in the provision of services to those with Down’s syndrome, with the possible result—indeed, the likely result—of those with other, less well known but equally disabling genetic conditions being denied equality of access to provision and becoming worse off than before, because funding is limited and unlikely to increase in the foreseeable future. My noble friend Lord Farmer set out in detail, with eloquence that I cannot match, that this is not a tiny minority but an increasing number of people with other disabling genetic conditions, some of which are very severe indeed, who are not included in this Bill.

What are the consequences of one group, on the basis of a pretty traditional categorisation of diagnosis being favoured, being preferred, while a large number of others are left out of account? It could give rise not to the idea that this is just a door-opener but that this is discriminatory and divisive among a community of people who face the same challenges. That would be a pretty undesirable outcome, were that to occur, dividing people with genetic conditions between sheep and goats. I put it pretty starkly because we cannot hide from the realities of life, which is that there is not enough money. That is where, if some are preferred, others are likely to get less.

I search for possible ways forward. In Committee in the other place, the Minister said something to the effect that the Government recognise that people with genetic conditions other than Down’s syndrome experience problems similar to those with Down’s syndrome and will therefore consider the overlaps and linkages between such conditions and Down’s syndrome, through the consultation on the development of the guidance. Your Lordships can see where I am driving. Clearly, the wording of the guidance is crucial because it is a directive to those who implement it, and therefore what it says will be followed. I take a commitment to consult on the terms of that guidance seriously but, given the potentially dire consequences for those outside the zone of preference, such a commitment is not, by itself, enough to quell my doubts about the desirability of this Bill reaching the statute book. It promises a process but not an outcome.

The timetable is now short to decide the fate of this Bill, so I appeal to the Minister. I hope that when he speaks, my noble friend, who appears to be backing this Bill, can offer some comfort on the score of non-discrimination between genetic conditions, regarding access to funding, based on fair assessment of real needs. I do not often agree with the noble Baroness, Lady Bennett, but she was right on the money in that the issue is assessment of real needs; it is not between one category of diagnosis and another. I hope that the Government provide us with some way forward to guarantee non-discrimination. Will the Minister be willing to issue instructions, if necessary, to prevent discrimination between people with Down’s syndrome and those with other genetic conditions?

In 2022, this House cannot pass laws which we have reason to believe would have discriminatory effect. If we do, we can be sure that, after passage, our legislation will be challenged in the courts by an aggrieved party. I am sure we all agree that it would be best to avoid this. I look forward to hearing from my noble friend either now or, if he needs to consider the matter, before we are in Committee, on what the Government have in mind to avoid discrimination by category of genetic diagnosis and instead promote access to provision of services based on assessment of real needs.

12:17

[Lord McDonald of Salford (CB)]

My Lords, this has been a fascinating debate and I am grateful for the chance to contribute.

Most noble Lords who have spoken have supported the Bill. The noble Baroness, Lady Bennett of Manor Castle, and the noble Lord, Lord Farmer, wanted more. I understand that. I listened carefully to the noble Baroness, Lady Neville-Jones, but the fact that we cannot have everything should not mean that we have nothing at all; rather I am glad to add my voice to the chorus in favour of what the noble Lord, Lord Wigley, called “small steps”, for three main reasons.

First, this Bill can be transformative. Investing in children with Down’s syndrome is demonstrably worth while. I know this from my wife’s experience. For most of the last 18 years, Olivia has supported a girl with Down’s syndrome. Lizzy is a wonderful person, now a multiple medal-winning international swimmer, on the threshold of adulthood, with the prospect of a high degree of independence.

Secondly, this Bill is urgent. When we were children, a baby born with Down’s syndrome had an average life expectancy of less than 20 years. Now, a baby born with Down’s syndrome has an average life expectancy of nearly 60 years. This is the first generation of children with Down’s syndrome expected to outlive their parents. This new fact needs a new policy response.

Thirdly, the Bill could enhance the UK’s international reputation. Last week, President Zelensky told Parliament that Britain was a great nation. These days, soft power is a large part of Britain’s impact in the world. The Bill would blaze a necessary trail, as the first of its kind anywhere in the world; it will be an example that other countries will want to follow. The Bill deserves a Second Reading and, when it becomes law, it deserves to be funded.

12:20

[Baroness Blower (Lab)]

My Lords, I rise extremely briefly to add my support to the Bill and to acknowledge that the question of “nothing about us without us” is very significant.

I began teaching in 1973, and would never have found a child or young person with Down’s syndrome in a classroom in front of me, but things have changed and moved on significantly. When I told my daughter, who now teaches a year 4 class, that I would be in the House of Lords today to hear a debate on guidance about services for people with Down’s syndrome, she said, “That will be really exciting, and so necessary”. One of the things she said to me was, “There just aren’t sufficient representations of the vast range of people that there are in our society available to us to use in our classrooms”. She is a young person who definitely wanted to go into teaching because she felt that it was important to be in a classroom with a range of people with different conditions.

I listened carefully to the noble Baroness, Lady Stowell, and I share her concern that, at a time of constrained resources, there might be a tendency to say, “We have to do this; we don’t have to do that”. But I hope we are better than that. It is so important that we fund the services as they are assessed—that we fund for need, not because a particular person happens to have a particular diagnosis or condition. On that basis, even though this is a small step and there is a risk—unless we fund everything properly—that some people may feel there is privileged treatment, I wish the Bill well.

However, since some of the “relevant” bodies that appear here are school governing bodies, the providers of early years services and academy proprietors, I want to be absolutely sure that the Government will be very clear that all those institutions have a big responsibility to read, understand and follow the guidance. That is an education matter, rather than a medical one.

[The Deputy Speaker (Lord Russell of Liverpool) (CB)]

My Lords, the noble Baroness, Lady Brinton, is taking part remotely and I invite her to speak.

12:22

[Baroness Brinton (LD) [V]]

My Lords, I declare my interest as a vice-president of the Local Government Association. I thank the noble Baroness, Lady Hollins, and Dr Fox for their time in answering questions at yesterday’s helpful briefing, and the various people and groups who have written to me and other Peers. It was also a pleasure to support the amendments to the Health and Care Bill of the noble Baroness, Lady Hollins, on mandatory training for staff working with people with learning disabilities and autism. I am delighted that the Government agreed. I too pay credit to the noble Baroness, Lady Hollins, for her outstanding campaigning over many years for people with learning disabilities.

My Spanish nephew Alex, now in his late 30s, has Down’s syndrome. As a family we have seen this baby grow into a fine young man, hampered only by the perceptions of others. My sister has had to fight for his rights, be it for a Covid vaccine this year or for his medical needs over many years. She had to take on the education authorities because there was no integration at all in schools: “children like that” went to a special school that was, in reality, a hospital, with locked doors and staff in white coats. She won her campaign and he was the first child with Down’s syndrome to go to mainstream primary in Majorca. But the most important part of his story so far is that he is a fantastic sportsman. Twelve years ago he won a European championship in karate; he has also swum in national competitions, and I cannot tell you how proud we are of his achievements. Yet too many people do not see past the condition, nor understand that every person with Down’s syndrome is an individual and has differing needs.

Another Alex, the same age as our Alex, is the daughter of our very close friend. She went to primary school and Sunday school with our children, and now lives happily in a house near her mum, with support from carers. She is non-verbal and needs constant support when awake. She loves her house, her daily routine and her family. As with almost all people with Down’s syndrome and their families, it has not been easy, but for this Alex, it works.

So when I read this ambitious and laudable Bill, my first question was: how will this help people with Down’s syndrome and their families? Our role in the Lords is to make sure that legislation delivers the intention of a Bill and does not create unintended consequences. I share the concern of the noble Baroness, Lady Neville-Jones, that inadvertently this Bill will create a hierarchy of disability that risks doing harm to the rights of other disabled people, particularly people with learning disabilities, which may also be discriminatory.

By their very nature, the Bill and subsequent guidance will create a unique and separate focus on the needs of people with Down’s syndrome, as well as duties and rights that are exclusive to this group, which risks undermining the principles of equality and non-preferential access to resources across education, health and social care, and employment. There is also a danger that it may disadvantage individuals with other disabilities who do not have the same legal recourse if providers fail to abide by the guidance. Can the Minister tell me what work will be undertaken to ensure that the Bill does not disadvantage people with disabilities other than Down’s syndrome? If the Minister believes that no such work is required, what is the purpose of legislating to provide exclusive duties relating only to people with Down’s syndrome?

I am also concerned that the Bill lacks power to achieve its aims, which risks causing confusion among public bodies and people with Down’s syndrome and their families about their duties and their rights.

In common with people with learning disabilities generally, people with Down’s syndrome and their families face significant inequalities and discrimination in our society. The current framework of legislation that we have to address this includes the Care Act, the Children and Families Act, and the Equality Act. However, they have been systematically weakened by underfunding and by removing mechanisms through which people can secure redress.

Understandably, expectations have been raised very high by the Bill, yet I see evidence from the Minister that it and the resulting guidance have no power to address these deep-seated problems. For example, can he explain how it will ensure that people with Down’s syndrome can secure appropriate and adequate social care and that our classrooms include additional teaching assistants? The Bill does not say that. Can the Minister provide examples of the differences he believes that this Bill will make in the context of health, social care and education?

Dr Liam Fox commented that the Bill

“sets a precedent that can be followed later on in other areas.”

That has been commented on by noble Lords this morning. Will the Minister tell me whether it is the intention of the Bill to set a precedent where each diagnosis will require a new set of guidelines and, if so, what continued role the Government see for the existing legal duties which underpin disability equality? In Committee in the Commons, Gillian Keegan said at the Dispatch Box:

“We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance”.—[Official Report, Commons, 26/1/22; col. 8.]


I know that by giving one group rights when resources are scarce, others will not get them. I echo the question asked by the noble Lord, Lord Farmer: what happens to those who have other genetic conditions, or none, but have learning disabilities, who must rely on the good will of Ministers in the future, and to those with learning disabilities who may not fall into this category? Here in Watford, our CCG decided some years ago to close the children’s respite centre, Nascot Lawn, because in its view respite care was not statutory. Children eligible for respite care have multiple and profound needs, and personal care for them has to be delivered by nurses or by family members trained by hospitals. Twice the Nascot Lawn families won High Court judgments against the closure and the removal of that respite care and the lack of proper provision.

The CCG repeatedly said that its resources were scarce and it had to prioritise just statutory services. It closed in 2018, and these children and their families have struggled ever since to get the support they need. It did not matter that their EHCPs said that these children and families needed respite care; it was all about resource. At least one family could not manage to look after their child without that respite care: being on duty 24 hours a day and every night had taken its toll. Will other people with high levels of need but who are not people with Down’s syndrome move even further to the back of the queue?

There is also concern that the Bill and guidance risk undermining principles concerning person-centred assessment and support, embedded in law, whether in relation to support for children and families or support for adults, by elevating the condition and suggesting that this predicts needs. That is why I gave the illustration of our two people named Alex. This not only represents a regressive step politically, by advancing a medical model of disability and elevating diagnosis over individual needs; it will also create considerable legal and regulatory complexity for local councils, the NHS and schools at a time when they are already stretched in meeting statutory duties. Will the Minister recommit to the principles of person-centred rather than diagnosis-centred assessment and support and tell me what work will be undertaken to embed this person-centred approach at every stage of the development of the guidance?

Given that it was announced in the Commons that there may be a “named person” on integrated care boards, which we have discussed at some length during the passage of the Health and Care Bill, what role will they have in ensuring the compliance of public bodies with the guidance? Will that be solely for people with Down’s syndrome, especially in the light of the past practices of CCGs, which I have outlined?

I will make a brief point on the proposed guidance. As my noble friend Lady Jolly said, will Ministers ensure that the principles of “No decision about us without us” ensures that the voice of people with Down’s syndrome is represented? Although the Commons has a mechanism to scrutinise guidance, that is not true in your Lordships’ House, so will the Minister undertake to ensure that there is time for a debate on the guidance, as it is published and debated in the Commons? As the noble Baronesses, Lady Bennett and Lady Uddin, outlined, government resources have been a real issue. The net is full of holes not through a lack of guidance, White Papers and good will but through a lack of government investment and strategic leadership for over a decade.

I think that everyone who has spoken at Second Reading today and in the Commons is passionate about ensuring that people with Down’s syndrome and their families can remove the current structural and social barriers that they face. The concerns that a number of Peers have raised today are important, and the Lords needs to be able do its job and to have responses from the Government in Committee and on Report to ensure that the Bill can deliver its aspirations and that it will not penalise others with learning disabilities because of a new hierarchy of resources. So will the Minister agree to meet those who have spoken of their concerns today prior to Committee, when it is clear we will be looking at a number of amendments?

12:33

[Baroness Thornton (Lab)]

My Lords, we have had a fascinating debate, in which the passion for supporting people with Down’s syndrome is absolutely undoubted in this House. I pay tribute to and congratulate Dr Fox, on bringing the Bill forward, and the noble Baroness, Lady Hollins, on her tireless work for those with learning disabilities over many years. These Benches have often been pleased to follow her lead and support her in this endeavour. I do not doubt that many of the 40,000 people with Down’s syndrome and their families will be watching and listening to this debate today, so I am happy to assure them that the Labour Benches will support the Bill at Second Reading.

We recognise that there are questions that will need to be answered during the Bill’s passage, and I am sure the noble Baroness, Lady Hollins, is aware of that. Of course, the first, identified by several noble Lords, is that singling out Down’s syndrome potentially misses the opportunity to ensure that authorities consider other conditions: autism, Rett syndrome and Williams syndrome. Indeed, the Genetic Alliance has contacted me to express its concern about other conditions being relegated. We do not want to create a hierarchy.

For example, as has been mentioned, antiviral Covid treatments have recently been approved for people with Covid-19 who are at the highest risk of becoming seriously ill. Down Syndrome is at the top of the eligibility list whereas other genetic conditions that confer the same or similar risk of becoming seriously ill are not mentioned at all. We do not want to be involved in something that inadvertently creates those kinds of problems and challenges for other learning-disabled people.

However, I welcome the department’s commitment that new guidance will be formed in consultation with key stakeholders. As your Lordships’ House may know, the Health and Care Bill, which many of us here have been involved in, sometimes late at night, has finished its Report stage. I need to congratulate the noble Baroness, Lady Hollins, on the commitment that she gained only this week, and I quote her from Hansard:

“I am very grateful … to the Minister and to all those working behind the scenes for reaching this point and accepting my amendment, as well as for committing to include a learning disability and autism lead on integrated care boards.”—[Official Report, 16/3/22; col. 398.]


My first question is that I wonder whether the noble Baroness may have inadvertently made the Bill a redundant piece of legislation because of the success that she has already had in raising the issue and getting it included in the Health and Care Bill, which we have had before us for what seems like quite a long time—the last month or so. That is my first question to the noble Baroness and the Minister. My second question to them is that I would like to be assured that the work being undertaken will not disadvantage other people with learning disabilities. I would like to be assured by the Minister that if the Bill proceeds, people with Down’s syndrome, in their diversity, and their chosen advocates will be meaningfully involved at every stage of the co-production of the guidance.

I am concerned about some of the rhetoric that has surrounded the Bill. I would like the noble Baroness and the Minister to confirm that the Department of Health and Social Care has no plans, as a consequence of the Bill, to develop any new guidance or amend any existing guidance concerning maternal healthcare and reproductive rights.

I wish the Bill the best, and I look forward to the discussions that we shall have about it in Committee in your Lordships’ House.

13:38

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

My Lords, I thank my friend, the right honourable Member for North Somerset, Liam Fox, who was here earlier; I thank the noble Baroness, Lady Hollins, for introducing the Bill in this place; and I thank all noble Lords for their contributions today.

Many who have spoken today have talked about their experiences of their own contact with people with Down’s syndrome. When I was a child growing up in Edmonton in north London, there were a couple of children in our neighbourhood who I sometimes used to play with who had Down’s syndrome. It is interesting to note that the words we used to describe them in those days would today be considered offensive. It is absolutely right that, as language evolves, we learn how to describe people with different conditions.

On that note, I take this opportunity to thank Rachel Ross from the National Down Syndrome Policy Group for sending me and other noble Lords the appropriate language and terminology. It is important that we get this right, and I know that there is cross-party consensus on that. If noble Lords have not received that, I have a copy in my pack and I will be happy to forward it on to them.

I want to be clear at the beginning that if there are no amendments, the Government will be able to give time to the Bill to support it. I should be clear about that from the start.

We agree on the need to improve life outcomes for people with Down’s syndrome; that case is compelling. It is very common for people with Down’s syndrome to experience compounded health risks compared to the general population. Some noble Lords have made the point that people may have more than one condition. We should be aware of the statistics: nearly half of children born with Down’s syndrome have a heart condition. People with Down’s syndrome face an increased risk of early onset dementia, and the NHS recommend regular check-ups to look for these signs from the age of 30. People with Down’s syndrome are also far more likely to experience recurring infections and become seriously unwell. This can be life threatening. Sadly, although life expectancy has increased, the risk of death for adults with Down’s syndrome can be around five times higher than for the general population. Despite this, people with Down’s syndrome are living longer. In 1983, the average person with Down’s syndrome lived to 25 years old. Life expectancy is now typically around 60 and has increased substantially in recent years.

There are existing legal frameworks in place which require health, care, education and housing authorities to consider a person’s individual needs regardless of their condition. However, there is evidence to suggest they have not always worked as intended for people with Down’s syndrome. That can be due to the lack of understanding or appreciation by commissioners and providers of services of the unique needs of people with Down’s syndrome, reducing the quality of care they receive and their overall life outcomes. For example, children with Down’s syndrome may remember and learn information in different ways from other children. This Bill is a significant opportunity to drive forward important changes, raising understanding and awareness of the needs of people with Down’s syndrome.

For the first time, legislation will require the Secretary of State to produce guidance to health, care, education and housing authorities about how to meet the needs of people with Down’s syndrome. Those authorities must consider the guidance; the relevant authorities will not be able to ignore it, and they must provide strong reasons for not following it. The practical impact of this guidance should not be understated. It will raise awareness and understanding of the needs of people with Down’s syndrome, and it will support authorities to recognise how to adapt services to meet those needs, ensuring that people with Down’s syndrome, their families and carers can get the support they need. That is why the Government support the Bill.

I recognise that there are concerns that a condition-specific Bill may be divisive. I hope that I can gently disagree, but also reassure noble Lords. This Bill is not about enhanced rights for people with Down’s syndrome; it is about making sure these identifiable and unique needs are not overlooked when planning, designing and delivering services. The Government have committed to develop the guidance through inclusive consultation with all interested parties, including some of the organisations named by noble Lords and, of course, people with Down’s syndrome and their families, those operating services and the organisations and individuals that represent people with Down’s syndrome. In the other place, as noble Lords have acknowledged, the Minister of State for Care and Mental Health made a clear commitment that in developing this guidance we will consider the links and similarities that Down’s syndrome has with other conditions. This consultation will make sure that all the available evidence and experiences can be considered to identify what support and interventions will best meet people’s needs.

We anticipate that the guidance will be published within a year of the Bill receiving Royal Assent, should it do so. At that time, Members in the other place and your Lordships will have the opportunity to scrutinise the guidance when it is laid before Parliament. Of course, people with Down’s syndrome and their families need to feel confident that this guidance will not be ignored—that it will result in action, and there will be avenues available to them if they do not believe they are receiving the appropriate care and support. There will be accountability at local level to make sure that this guidance is implemented. The Government made the commitment in the other place that statutory guidance relating to the Health and Care Bill will require ICBs to have a named person overseeing how the guidance is implemented and taken into account in practice.

I reassure your Lordships that this does not restrict the oversight to health and care authorities. ICBs are required to work with local authorities to establish integrated care partnerships, which bring together organisations to decide how to best address public health needs, including housing and education provision. The guidance will be subject to regular review to make sure that it remains current.

If noble Lords will allow me, I shall try to address some of the specific questions that were asked. It is important that I try to answer them. In response to the noble Baroness, Lady Jolly, officials are talking to stakeholders about this Bill, including the Down’s Syndrome Association and the National Down Syndrome Policy Group, to understand how it fits in and alongside wider policy on learning disability. We will keep the guidance under review and expect to update it periodically as policy and practice changes. I hope that this will be living, learning guidance, rather than just something that sits on dusty shelves for years. If we think about how our language and understanding has evolved, of course it is only right that we update that guidance as research increases and we learn more about this condition and other genetic conditions.

I am afraid that the reality is that it is difficult to say when an in-the-round look at services for people with Down’s syndrome was last done. In some ways, the fact that we cannot directly answer the question of the noble Baroness, Lady Jolly, highlights the need for this Bill and to shine a light on this issue. It is through wide consultation that we will determine the appropriate and best practice of this service for people with Down’s syndrome. I hope that noble Lords will contact me, as the Minister responsible, if they are contacted by any organisations which say that they have not been included in the consultation. I know that sometimes, noble Lords kindly apologise for writing to me, but that is my job as the Minister, and I accept that I should be held to account in this place. I hope that noble Lords, if they feel that any organisations are being ignored, will write to me.

The noble Baroness, Lady Bennett, rightly raised concerns, which we have received, regarding how this relates to abortion. For the avoidance of doubt, the Bill is limited to the needs of a person with Down’s syndrome after they are born. This means that it does not address abortion. This Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. Statutory guidance cannot be used to amend primary legislation such as the Abortion Act. By setting out in statutory guidance the steps that would be appropriate for health authorities to take when providing services and support to people with Down’s syndrome and their families, we believe there will be a wider positive impact for expectant parents who are told their unborn baby may have Down’s syndrome. However, the Bill is still about the child after they are born.

I thank my noble friend Lord Farmer for engaging with me on this issue. The Government rightly recognise that people with other conditions may experience similar problems. This is why I reiterate the commitment made by the Minister in the other place that we will consider the overlaps and linkages, as my noble friend Lady Neville-Jones said. We recognise the concern about services prioritising different groups of people in a way which is not focused on assessing people’s needs. I point out that any preference of which noble Lords may be fearful would be unlawful under the Equality Act 2010. The guidance is about making clearer the steps that could be taken to meet the unique needs of people with Down’s syndrome. This is something the guidance could emphasise strongly. We will engage and consult upon this in detail when developing the guidance.

Turning to one of the issues raised by the noble Baroness, Lady Uddin, I hear the concerns expressed about consulting with people with Down’s syndrome and other conditions. We are committed to ensuring that this guidance works, and that it evolves as we learn more. We believe that the best way of addressing this is to do it once the Bill has passed. Issues were also raised about the completion of the SEND review. Unfortunately, it has been delayed due to the pandemic. Also, the pandemic has highlighted some very real issues, and exacerbated some of them. Therefore, even though it is irritating that it has been delayed, it is only right that we take advantage of the light which has been shone upon the exacerbation of those conditions to ensure that we have appropriate guidance.

The Department for Education plan to publish proposals arising from the review of a public consultation by the end of this month. It is important to hear from a wide range of people, including the noble Baroness, Lady Uddin, given her years of experience, as well as the many organisations with which she has worked over the years. I emphasise that this is not about giving preference to people with Down’s syndrome. It is clear that to do so would be illegal under the Equality Act 2010.

In conclusion, I know that there are noble Lords who have concerns about this, and I am grateful to the noble Baroness, Lady Thornton, for her commitment that she will support the Bill. I make a plea to all noble Lords. Given, as my noble friend Lady Neville-Jones said, the time frame and the amount of legislation we trying to get through, if this Bill is amended, it may well fall.

Some of your Lordships may have read the Robert Caro biography of Lyndon B Johnson. In that book, it talks about his amazing career and at the end, one of the things it covers is the 1957 Civil Rights Act. That was criticised by a lot of people for not doing enough. Johnson’s plea to them was, “Let’s take this, bank it and build on it”. That led the way to the 1964 Civil Rights Act. Now I am not saying that I want to equate those Acts in any way with the Bill, but they are about recognising issues that ought to have a spotlight shone upon them.

I therefore make this plea to noble Lords: let us together take this step. Please let us support the noble Baroness, Lady Hollins, for all the work she has done and for the way she has pushed the Government during the Health and Care Bill and highlighted many of these issues. One of the things I find as a Minister in this place is how much I am still learning daily, about not just my portfolio of technology, innovation, life sciences and international relations but the many conditions that people have, and what more we can all do to help them. I hope that noble Lords will feel able to support the noble Baroness, Lady Hollins, and not amend the Bill, otherwise we risk not taking that first step.

[Baroness Neville-Jones (Con)]

My Lords, on the basis of what my noble friend the Minister has just said, is he open to further discussion on the Bill between now and Committee? I did ask, but I do not think he said whether he was ready to talk further. I think there are perhaps others in the Chamber who might be interested.

[Lord Kamall (Con)]

I hope the noble Baroness will not take this personally and I am sorry I forgot to answer that specific question. I am sure noble Lords will recognise that a number of questions were directed at me. I hope they will also recognise that I always try to answer as many questions as I can, and we go through Hansard to make sure that we sweep up afterwards, as it were, and write to noble Lords. I will of course be happy to have further conversations. It may be me or the relevant Minister at other times, but I am very happy to make sure that there is a Minister who will consult with the noble Baroness, and with any other noble Lords who feel that their concerns are not being heard enough; we can make that commitment.

12:52

[Baroness Hollins (CB)]

My Lords, I thank all speakers today for such a stimulating and informed debate, and others who were unable to be present, including my noble friends Lord Crisp, Lady Watkins and Lady Campbell, and the right reverend Prelate the Bishop of Durham, who had hoped to speak. I also thank David Nuttall, the Department of Health and Social Care civil servant who leads for learning disability, for his advice and help in preparing for today, and the Minister for his assurances.

I hope to reassure the noble Baroness, Lady Bennett, that there is no intention or possibility of this Bill affecting women’s reproductive choices. The Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. It cannot be used to amend primary legislation, such as the Abortion Act. The noble Baroness also mentioned that the Down’s Syndrome Association was not involved in drafting this Private Member’s Bill. I have spoken to the chief executive of the association at some length. When I asked her about the Bill, Mrs Boys said it would be more divisive to stop the Bill than to let it pass, and that it would be more constructive to work alongside others to ensure this guidance is as effective as possible. She told me that she supports it.

If amendments are laid, the Bill will be killed. If there are no amendments, Third Reading will take place on 1 April. If the Bill does not pass, it will fall into oblivion—yet again, out of sight and out of mind. There will not be another Bill for learning disability to replace it. The desire for the perfect is so often the enemy of the good. People who know me well know that I am absolutely committed to empowering people to be fully involved—it is absolutely “Nothing about us without us”. Would it not have been good if somebody with Down’s syndrome could have stood here today to speak about it?

In the other place, there was a commitment to ensure co-production of the guidance. The co-production and co-delivery of training is embedded in the Oliver McGowan mandatory training amendment, which we have spoken about and which was approved just two days ago. I believe assurances from Ministers that the consultation on the development of the guidance will be fully inclusive.

The noble Lord, Lord Farmer, spoke about 22q deletion syndrome. I know that the Minister in the other place specifically acknowledged that people with similar needs as people with Down’s syndrome would also be considered in the guidance. I believe that the Bill is another step on the way to improving access to the health, care, education and housing that all people with Down’s syndrome are entitled to in their desire to live fully participating lives in our shared world.

The former US President Calvin Coolidge said:

“Nothing in the world can take the place of persistence.”


I commit to continuing my drive to see people with Down’s syndrome and all people with learning disabilities lead full and healthy lives—ordinary lives—in inclusive communities. I believe that the first step to increase awareness and support for person-centred care for people with learning disability is to talk about it. The discourse in Parliament itself on this Bill is part of the jigsaw. Noble Lords will know that this was my approach in raising the issue of mental health up the agenda— first, get it on to the agenda. I am an optimist. I beg to move.

Bill read a second time and committed to a Committee of the Whole House.