Health and Care Bill

Baroness Jones of Whitchurch Excerpts

Committee stage
Wednesday 9th February 2022 Lords Chamber

[Baroness Barker (LD)]

My Lords, the noble Lord, Lord Hunt, used the important word “contention”—a contention that there is a tension between the rights of women and those of trans women. He and I disagree about that because I believe that they both deserve to be treated properly and respectfully. I believe that the Equality Act enables that to happen.

It is that Act which enables there to be single-sex provision. It is precisely because there are occasions and times when it is important for that to happen that we have to embody it in law, otherwise it could not exist. That is why under the Equality Act there is a specific statement that there should be safeguards in place, that there are special circumstances where treatment needs to be sex-specific, and that where it is assessed that a trans person should be put in an otherwise gendered ward, such departures are allowed but they need to be proportionate to achieving “a legitimate aim”. Like my noble friend Lady Brinton, I do not believe that making assumptions about a person because of the way they look is a legitimate aim.

I have listened carefully to all the speeches that have been made, and they have contained some very powerful contentions and assertions. What they have not contained is any evidence at all that this is a significant problem in the NHS. The amendments would cause a significant problem in the NHS—for all patients, not just trans patients, if one thinks through the implications of what has been written in them.

Day to day, NHS staff routinely have to deal with patients of all sorts, with all sorts of difficult problems, and as professionals they make judgments day in, day out about what is appropriate care. Unless and until there is significant evidence that backs up the assertions and contentions of the noble Baroness, Lady Nicholson, and the noble Lord, Lord Blencathra, I believe we should leave them with the guidance that has worked perfectly well up till now.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I intend to be brief because we do not believe that these two amendments are either necessary or appropriate in the context of the Health and Care Bill. If the Equality and Human Rights Commission is conducting a wider review into single-sex services then we should consider those issues at that time, but not in the context of this Bill.

I agree with the noble Baroness, Lady Brinton, that the Equality Act 2010 and the 2019 NHS guidance Delivering Same-Sex Accommodation already provide an effective mechanism for inclusion in the context of single-sex wards. The two amendments seek to cut across long-standing provisions in both the Act and the guidance. There is no substantial evidence to suggest that the status quo is not working and that NHS professionals are unable to use the existing guidance, which clearly sets out the principles and practice to be followed.

We also consider that the amendments could do harm if implemented, because they would create a blanket rule requiring trans women to be treated on men’s wards and trans men to be treated on women’s wards. At best, that would create an environment contrary to the dignity and well-being of the patients. At worst, it would leave trans patients at the risk of harm and abuse by outing them in a public context at a time when they are particularly vulnerable.

Like other noble Lords, we have received a detailed briefing from Stonewall imploring us to oppose these amendments. Given that we do not consider that the Bill is the right place for the consideration of these issues, we will not be lending our support to the amendments.

[Lord Kamall (Con)]

My Lords, I am grateful to my noble friend Lord Blencathra for bringing this discussion before the Committee and to my noble friend Lady Nicholson for taking the time to meet to discuss this issue, on which she is a strong advocate.

It clearly arouses strong feelings, but it is really important that we remember two principles: dignity and respect. There are people who feel they were born in the wrong body, and we should respect their rights as trans men or trans women; at the same time, there will be some women in wards who, on seeing someone who, to them, seems like a man, may feel slightly vulnerable at a particularly vulnerable time—in hospital. It is right that we get the right balance.

I hope noble Lords will be aware that NHS England is currently reviewing the Delivering Same-Sex Accommodation guidance to ensure that it remains focused on privacy, safety and dignity for all patients. The NHS is committed to meeting its duties under the Equality Act and, as such, needs to give due regard to both those whose gender identity is the same as their biological sex at birth and those whose gender identity is not. This means that the rights and needs of women and trans women are equal in law.

Following the review, the new content of the guidance will be informed by engagement with a wide range of stakeholders and by the statutory duties of the NHS outlined in the Equality Act 2010, including the public sector equality duty. NHS England is currently under- taking this review and is fully aware of its importance. The guidance, which will be updated if appropriate, is due to be published later this year. I call on noble Lords not to pre-empt the outcome of the guidance review. Any guidance will—indeed, must—be compatible with the requirements and duties placed on NHS bodies by the Equality Act 2010.

I am aware that concerns have been raised about the safety of women in single-sex wards. We, as a Government, believe that violence of any kind has no place in NHS facilities. We expect that hospital staff will act in the best interests of all patients and can, if necessary, call on security staff and law enforcement to ensure that everyone is safe. I repeat my request to my noble friend Lady Nicholson for evidence of such cases, whether it be women who feel uncomfortable or patients or staff who have raised concerns and been accused of being transphobic. If that is the case, I ask her to bring these cases to my attention and we can look at them further.

However, given that NHS England is currently reviewing the guidance, I hope noble Lords can appreciate the need to allow it time to review it in full. I ask the noble Baroness to withdraw her amendment.

--- Later in debate ---

[Baroness Watkins of Tavistock (CB)]

My Lords, I too support this amendment, which is absolutely in tune with reducing health inequalities for a particular section of our population and should be warmly supported across the House.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I thank the noble Baroness, Lady Hollins, for this amendment. Like others, I pay tribute to her tremendous work on behalf of people with learning difficulties and autism, which we all acknowledge and respect.

The amendment would reinforce and hasten the implementation of and the legislative basis for the Government’s commitment to developing a mandatory training and professional development system for health and social care staff. It would also establish a statutory code of practice, to be updated every three years, setting out guidance on the content, accreditation, delivery, monitoring and evaluation of the training.

The NHS England pilots for the modules to support the development of the training are currently under way, as the noble Baroness said. They involve key stakeholders, including Mencap and the National Autistic Society. It would be helpful if the Minister could provide the Committee with an update on the progress and timescale for completing and assessing the pilots and for moving forward and implementing the new training system.

The amendment is comprehensive in terms of both amending the 2014 regulations under the Health and Social Care Act 2008 and setting out issues that the code must address, including the relevant core education and training frameworks and strategies applying to learning disabilities and autistic people. It also contains the definitions of autism and learning disability on which the code should be based.

In this debate, we are all sadly reminded of the tragic death of Oliver McGowan, who died after those treating him medicated his autism incorrectly. His mother’s petition and determined campaign for mandatory training is thankfully coming to fruition, so that we can ensure that all staff receive proper training and can develop the skills and experience needed to provide the safest and most effective care and support for people with learning difficulties and autism. Including the mandatory training requirement on the face of the Bill would be a major step forward and I look forward to the Minister’s response.

[Baroness Penn (Con)]

My Lords, I too am grateful to the noble Baroness, Lady Hollins, for bringing the important matter of staff training on learning disability and autism for the health and social care workforce before the Committee today. Evidence tells us that there is a pressing need to improve understanding and awareness of learning disability and autism among health and social care staff and that the staff themselves want this training. Introducing mandatory training is an important way in which we can address persistent disparities in health and care outcomes for people with a learning ability and autistic people. As we set out in the Right to Be Heard publication of November 2019, the Government have committed to requiring all NHS and social care providers who carry out regulated activities to ensure that their staff have achieved the learning outcomes relevant to their role.

--- Later in debate ---

[Lord Scriven (LD)]

My Lords, I would also like to speak quickly on these amendments. The last suite of amendments was about professionals having confidence in the health service. Patient data is the bedrock of individuals and citizens having confidence in their health service and how their data is used. I used the phrase “living in a parallel universe” in Committee a few days ago. Today, the Government published Joining up Care for People, Places and Populations, their proposals for health and social care integration. On reading chapter 4 on digital and data, it would appear that we are living in a parallel universe, because there are clear issues about what the Government say this integration will be. The document states:

“This will ensure each ICS has a functional and single health care and adult social care record for each citizen by 2024”.


There is nothing about opt-out. This is a very clear view about what will happen. I will explain why it is a fantasy world in a minute.

I come back to Amendment 300 in the name of the noble Lord, Lord Hunt. There is a really important thing about the standard process for opt-out. In the area where I live, there is a DGH, a teaching hospital, a community care trust, a mental health trust, a maternity unit, a social care provider—it could be the council or from the voluntary and third sector—and my GP. If there is no standardised approach to opt-out, it will be needed in nine or 10 organisations. That is why we need a standard opt-out approach. It is absolutely wrong for the citizen to trail through nine different organisations, probably with nine different processes, if they wish to opt out, because not every citizen may wish to be part of a single health and adult social care record by 2024. I hope that most will, because they are important, but there is the issue of opt-out.

The document goes on to state how data will be used; it goes way beyond individual healthcare. It talks about population health platforms, and how data will be used and can be directed with a single standard from the centre. On information governance, paragraph 4.15 says that

“This will make sure that when it is accessed or provided (for whatever purpose), it is in a standard form, both readable by and consistently meaningful to the user or recipient”.


It is good to have it in a standard form but “for whatever purpose” leads to a wider definition. The document also says that the standard will be laid out in the Bill but, as the noble Lord, Lord Hunt, said, that is at the direction of the Secretary of State through regulation, which is worrying.

I ask the Minister, clearly, how this new document fits with the Bill we are discussing. Why, yet again, is a White Paper ahead of the legislation we are talking about today? There are things we could amend that would stop some of the things in this White Paper.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I will respond to the debate, but my comments apply equally to the next group, so I hope that the noble Baroness, Lady McIntosh, will forgive me if I do not respond to that group separately. We have heard some very thoughtful and persuasive contributions to the debate on these amendments this evening, and once again my noble friend Lord Hunt and the noble Lord, Lord Clement-Jones, have very eloquently led the charge. I congratulate them on their contributions and the constructive detail of their proposals. Issues such as this require some specific proposals to have any meaning and their amendments very much do that: they spell out some solutions to the challenges we face. I also welcome the specific proposal from the noble Baroness, Lady Tyler, who made the case well for a single identifier for children.

The underlying issues around the use of information collected by the NHS are not new. As we know and have heard, the NHS is almost unique in being a single player in this field, at least for some purposes. It can and often does lead the world in its ability to collect and aggregate patient data to drive improvement and for other non-profit-making purposes.

Since the organisational changes of the 1990s, data collection and use have been well developed, and information and analysis—for example, from the Secondary Uses Service and some GP sources—have been extensively used by academics and researchers, as well as operational managers, to huge public benefit. But we have struggled, as we have heard. Despite hugely expensive meanders into, for example, the National Programme for IT, we are far from the goal of integrated data sharing, even in a single hospital, let alone all hospitals, let alone for all care. Clearly, technical, legal and cultural barriers need to be overcome before we can maximise the use of all the data collected.

As noble Lords have pointed out, the groundswell of opposition to data collection and the related concerns about who gets to use it and for what purposes runs along these barriers. We know that the NHS often has dismal communications—for example, around CareCo and the recent changes to the use of GP data, which we have heard about this evening.

Although we do not own our data, there is a very powerful set of legal protections over what data can be collected and stored about us and what it can be used for. If the public had absolute confidence in the systems and usage rules, there would be far fewer objections to their information being used to drive improved healthcare, innovative drugs research or better preventive or public health information programmes. But the reality is that concerns are widespread—about data breaches, about NHS data reaching people who do not need to see it and, more recently, as we have heard, about data being used by a number of unethical organisations and private companies to drive profitability rather than for the improvement of public health.

Many patients would wish to be able to refuse to allow data collected about them to be used simply to drive a better marketing campaign for slimming or cosmetic aids but would allow their data to be aggregated so that better drugs could be developed and treatments improved to save lives; that would be an altogether different matter. Amendment 305A, in the name of my noble friend Lord Hunt, on establishing a sovereign health fund to invest in data-driven healthcare assets to generate long-term income for health and care makes that point, and I am sure it would have public support.

The key principle should be that all data collected for the purposes of care should be held and controlled by the public sector and its use protected. It should be subject to ethical guidelines and independently verified by an expert oversight group. These amendments would strengthen these rights in those regards.

Anyone who visited a hospital 20 years ago and walked around would probably have come across a trolley stacked with files that could easily have been removed or read. However, IT and the ability to aggregate vast amounts of data, allowing serious data breaches, is a modern and valid concern. My noble friend Lord Davies illustrated this with specific concerns about smart programmes which can identify individual people from a very small amount of data about their lives.

So we do feel that these amendments would be a very helpful way to address the underlying and fundamental problems of the lack of patient and public confidence in how their data is going to be used and shared. I hope the Minister, the noble Baroness—no, it is the noble Lord—agrees that these proposals offer a helpful way forward in addressing these concerns. While we will not press the amendments to a vote this evening, I hope he is able to offer some reassurance that some of these practical proposals will be taken forward by the Government.

[Lord Kamall (Con)]

Let me assure the noble Baroness that I was not trying to opt out of my duty to respond.

I thank all noble Lords for their contributions to this important debate. I reassure many noble Lords across the House that when I first became a Minister, I had many of these questions myself—and I continue to have them, if I am perfectly honest.

I will turn first to the amendments before deciding how to go forward, as it were. In response to Amendment 298, Clause 81 explicitly mentions NHS England as a body to which mandatory information standards can be applied. As set out in this clause, the exact procedure for publishing information standards, as well as any procedure for granting waivers in respect of compliance with these standards, will be set out in regulations subject to parliamentary scrutiny under the affirmative procedure. The regulations may set out limits on the circumstances in which a waiver may be granted. For example, a temporary waiver might be considered where an organisation does not have funding in place to implement the required changes.

The noble Lord, Lord Hunt, also referred to accredited data access environments and rightly acknowledges that their function is not just to support research but for analysis to support service planning, as well as other essential activity. I believe that we are fulfilling our promises to the profession and the public at the moment, but clearly more could be done. We have made clear that data collection for General Practice Data for Planning and Research will now begin only when: first, we have in place the ability to delete data if patients choose to opt out of sharing their GP data with NHS Digital; secondly, a trusted research environment is available, where approved researchers can work securely on deidentified patient data; and, lastly, a campaign of engagement and communication has increased public awareness, explaining how data is used and patient choices.

In addition, the Government have committed to developing, this year, rules for such data environments in the NHS, including technical specifications and a framework for accreditation. However, while we expect secure data environments to be appropriate for the vast majority of uses, there are likely to be exceptions. For example, where patient consent has been given for data to be made available to an external researcher or organisation, or where there is a court order requiring data, it may have to leave the secure data environment. I assure the noble Lord that we will continue to examine how secure data environments operate and are governed, to make sure that they are fit for the future.