Down Syndrome Bill

Baroness Neville-Jones Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[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.

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[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.

Health and Care Bill

Baroness Neville-Jones Excerpts

Lords Hansard - Part 1 & Committee stage
Monday 24th January 2022 Lords Chamber

I think that I have said enough, but I refer again to Sir Martin Landray, who is known for his Recovery trial and use of dexamethasone for treatment of Covid. He is going to use Covid-style clinical trials by setting up a new company to try to find treatments for other common diseases. I urge the Minister to accept this amendment: it will do more good than most.

[Baroness Neville-Jones (Con)]

My Lords, I shall speak briefly in support of this group of amendments, particularly Amendments 79, 81, 96 and 196, which concern both research and clinical trials. I am grateful to the noble Lords who have put their names to them.

As other noble Lords have noted, the Government have actually recognised the need for integrated care boards to have research among their general duties—but one would be hard pressed to realise from the Bill’s drafting that this was a priority. As the noble Lord, Lord Sharkey, said well, the drafting is weak. We need something much more explicit and action oriented. Frankly, “promote” is a vague term that can mean anything or nothing. We need action-oriented language of a kind that puts the NHS and the resources that this country has right at the centre of medical research.

We need an amendment of the type that my noble friend Lady McIntosh of Pickering has put down to give us a national research strategy and join up the national and local levels in achieving it. The noble Lord, Lord Kakkar, has given us many reasons why we need to move on the whole subject of research and make it central to the National Health Service’s mission. We need something that is explicit in charging the NHS to conduct research and enable relevant bodies to do so as well. The results should be exploited in healthcare. Linking research to local needs will also increase their relevance, and the adoption of these results and the obligation to report on them will ensure that things really happen.

I could not find in the drafting any reference to the need to do clinical trials. Surely this is a central element in research and could be extraordinarily advantageous to the UK. As the noble Lord, Lord Patel, has just said, the NHS has a database that is unparalleled in the world. It provides us with an extraordinary advantage. I recall that when I was on the Science and Technology Committee, we heard considerable evidence about the barriers that were put in the way by rather pettifogging EU regulations. I recall the desire, when free of these, to be able to conduct clinical trials. I am aware that some people argue that the UK market is too small, but, with our database, that is not the case—and we can ensure that we have co-operation from abroad.

It is very important that this becomes a central element in our research programmes. It puts us on the map internationally, and it ensures that the NHS, which, after all, is a great consumer of the public expenditure in this country, is also part of wealth creation. That should be part of the result of the research that it conducts.

I do not think that the Government disagree with the thrust of the thinking here, but I very much hope that they will agree that the Bill’s drafting, as it exists at the moment, is inadequate. I hope that, when my noble friend comes to reply, he accepts that the language on both of these elements needs strengthening, giving a central role to research and clinical trials in the NHS.

[Baroness Merron (Lab)]

My Lords, I am grateful to noble Lords for putting forward these amendments, all of which seek to strengthen the Bill and build on what the noble Baroness, Lady McIntosh, opened with: the need for clear lines of responsibility and for a joined-up strategy—in other words, for us to get to the point that we are looking for.

My noble friend Lord Hunt spoke of the embodiment, perhaps, of that through a chief innovation officer, who could be a reminder—not on their own—of the need to build in research and innovation as core throughout commissioning. I am sure that the Minister has heard that this debate is a cry for us to embed in the Bill and in our NHS not just a requirement for but a delivery of research and innovation to the appropriate standard to serve the country. It will not just happen on its own.

We have seen significant variation of opportunity for patients to engage in research and disparities in participation reported on geographic and socioeconomic lines, by ethnic origin and across different disease areas. This is due to the fact that the NHS has been unable to prioritise resourcing and delivery of research, which has been a particular feature over the past decade.

In the Bill, we have a major opportunity to embed a research-active culture—words used by the noble Baroness, Lady Harding—within the NHS which could build on the response to Covid-19, which the noble Lord, Lord Patel, emphasised. That response saw more NHS sites, staff and patients engage in research than ever before. Let us not waste this opportunity.

The Bill offers little different to the Health and Social Care Act 2012, which also did not and does not mandate clinical research activity, stating just a duty for clinical commissioning groups “to promote” research. Your Lordships will notice the similarity in wording in the current Bill. The noble Lord, Lord Sharkey, is quite right, as are other noble Lords, to speak of the weakness of just using the words “to promote”. This set of amendments is about how we make it actually happen. The amendments are about mandating integrated care boards to conduct research and to monitor and assess innovation, because without that, it will just not happen.

Legislation is indeed a critical element, but it is important to stress that it must be accompanied by the necessary infrastructure: for example, through staffing levels—to which we will return in our next debate—research capability, digital resources and tools and access to services, as well as efficient trial approval processes, the ability reliably to recruit patients, the offering of guidance and, of course, dedicated staff time for research. All of those will make the legislation actually mean something.

As well as a strengthened legislative mandate which moves beyond the current duty simply to promote research, it would support patients, clinicians and NHS organisations across the country to have equal access to the benefits brought about by research participation. This will be better for patients, give greater staff satisfaction and deliver economic benefits not just for the NHS but for the broader economy. The noble Lord, Lord Kakkar, talked about the life sciences being a major player as a contributor to our economic well-being and prosperity in this country—something also emphasised by my noble friend Lord Davies.

Such a mandate would also ensure support for levelling up and make it possible to address health inequalities. This in turn would support the ambition set out in the Government’s clinical research vision: to make access and participation in research as easy as possible for everyone across the UK, including those in rural, diverse and underserved populations. I hope the Minister will take the opportunity to reflect on the points made in this debate, because this group of amendments provides an opportunity to strengthen the Bill to actually deliver.