(1 day, 7 hours ago)
Lords ChamberRead Hansard Text Watch Debate Read Debate Ministerial Extracts
Baroness Coffey (Con)
My Lords, where do we start? Where did we end and where are we going? That is part of the challenge of a mid-group break, especially when this is a large group which covers a number of important areas. I am conscious that the noble Lord, Lord Austin of Dudley, has said a fair amount of what I had planned to say. I am concerned that a single company is being singled out and about comments made regarding wacky views of somebody who has an ownership in it. I think that the Church of Scientology is wacky. It does not stop me watching a Tom Cruise film. Wackier is the statement made by Green Party members that Zionism is racism. That is pretty wacky. Nevertheless, it is for them to decide and a matter of freedom of speech and freedom of thought.
Coming back to the substance of this group of amendments, I am conscious that we will come back in more detail to the single patient record. Looking at aspects of the amendment tabled by the noble Baroness, Lady Kidron, there is a lot of merit in thinking about how we put a shell around data in this country. I understand the sovereignty approach. For example, all the DWP data, on very vulnerable people, used to be held in Ireland because the data was held by Amazon Web Services. That saved money for the taxpayer. We had no problem at all, until we left the European Union and made the decision to bring all that very precious data back into the UK in case of other rule changes which may have restricted our access to that data or new laws applying because of where it was held. Therefore, there is a lot of merit in saying that it must be here.
It is worth noble Lords looking at the letter sent by the Health Innovation Minister, James Frith MP, to Layla Moran, who chairs the Health and Social Care Committee in the Commons. It tackles some of the issues that have been raised. People do not want their data to be all around the world. They are scared that it might expose them to something. That should be safeguarded against. That letter covers a lot regarding IP rights and how the NHS either owns it or has, effectively, a permanent licence or right to deploy the technology that was there.
However, I am concerned when we start getting into, “If this prioritisation of researchers is in the UK, that’s sort of okay and we prioritise public over private first” and so on. We are missing the point that this data is being released in an anonymised way for the benefit of patients. It is not a bad thing that a private company can make some money. It is not a bad thing that GSK or Pfizer may start to make tailored medicines and medications based on the evidence of what has been happening with patients in the UK. I accept that is a very rich dataset. Not then being allowed to develop new medicines and, therefore, make profits feels an unnecessarily Soviet-style approach when we are trying to ensure that a lot of this linking together is being done to improve the health of people in this country. Approaches could be modified.
I am also a bit of a purist. We should not be legislating about how the NAO should do its work or the work it should do. The NAO is a body of Parliament. Its chief executive is an officer of Parliament. It is not in legislation but under our Standing Orders it is responsible exclusively to the Public Accounts Committee and has a broader duty regarding understanding value for money and the use of taxpayers’ money. Some of the actions that are being referred to may well be stuff that it will wish to take forward in its analyses.
However, it would be helpful for the Government to appreciate that Minister Frith’s letter to the Commons Select Committee was targeted only in a particular response to certain points that had been made during that evidence session, correcting an important error that had been made in the DPIA. It would be helpful for the Government to have a more open approach in sharing how this will all work and how it is already working, and in giving assurances to parliamentarians of both Houses on how it will work in practice to quash this myth that, all of a sudden, stuff is being done that will expose vulnerable people.
This is the wider point about IT and digital sovereignty. We have a National Data Guardian, which has already been put in statute. By the way, I recall that, when NHS Digital was a separate legal entity, it refused to give information to the chief executive of NHS England when certain data was requested. At one point during the Covid crisis, it refused to give information to help the Government function more effectively. With these sorts of issues, it is almost as if what is perfect for privacy, or for this, that or the other, becomes the enemy of the good in what we are trying to achieve, which is the good use of technology and the federated platform to improve productivity.
I know that there have been disputes. It is important that the Office for Statistics Regulation, the parent organisation of the ONS, did that review. It pointed out issues that need to be addressed in future, but it did not say: “Actually, the information that the NHS has given out is largely wrong”. How do we try to improve from where we are right now and not miss out on the genuine opportunity of trying to work through, and make the most of, our technological advances?
I appreciate that there are also thoughts about whether it should just be a UK supplier. Again, this is the wrong approach and mentality. The DHSC and the NHS have got more sophisticated in their way of doing procurement, so to rule out any IT company that is not headquartered here in the UK would be a huge error.
There are other broader elements around where we are heading. I will leave some comments for our later debate on SPR, but there is something here about making sure that there is privacy by design—I think that was the phrase used by the noble Lord, Lord Clement-Jones. I have been weighing this up, and I will come back to it on SPR, but it concerns me somewhat, because we might think that we will happily hand it over to this or that clinician, or it will be used more broadly, but who really gets to see it? All this data is being used in an anonymised fashion. If, for example, GSK was purchased by a foreign pharmaceutical company, some of these amendments—I appreciate that they might be probing, although their level of detail suggests that this is exactly what noble Lords want them to achieve—would start to allow legal challenges about how this could be done. As I say, do not let perfection in one aspect be the enemy of the good in another, which is making the best of NHS resources to improve people’s health. I am sure we will return to this on Report, but I encourage noble Lords who will be writing amendments to reflect on how far into that level of detail they need to go.
Lord Kamall (Con)
My Lords, I am grateful to all noble Lords who have brought forward amendments in this group. I well recall the debates that the noble Lord, Lord Clement-Jones, and I had during the Health and Care Bill in 2022. I think he was surprised to find that we agreed on far more than he thought we would. What was very helpful in that Bill, if I remember correctly, was that there was an official who had been seconded from the Cabinet Office to the Department of Health, whom we were both able to trust to find a solution that we were both happy with in the end. Sadly, having reached that really good solution, it has all been undone by this Bill. I therefore completely understand the reasons for the amendments tabled by many noble Lords in this group.
I will speak briefly to the amendments tabled by my noble friend Lady Neville-Rolfe, who is not in her place, and by the noble Lord, Lord Austin of Dudley. Although these amendments approach the question of NHS procurement slightly differently, they raise important questions about the principles that underpin the way in which taxpayers’ money will be spent. While NHS procurement should always support the delivery of safe, effective and high-quality care for patients, we know that the NHS is not only a provider of healthcare but one of the largest purchasers of goods and services in this country and a major employer. It has an enormous impact on the wider economy, with the potential to support British businesses, to encourage innovation and our domestic manufacturing capabilities, and to create skilled employment in areas such as medical technology and life sciences research, where the United Kingdom already possesses considerable experience.
My noble friend Lady Neville-Rolfe probes the Government on how we use that purchasing power intelligently, not only to secure the goods and services that the NHS requires but to support resilience, innovation and wider economic prosperity in the country while adhering to the principle of value for money. It also raises an important question about how we assess value for money. As the noble Lord, Lord Tarassenko, said, the cheapest initial purchase is not necessarily the best in the long term.
Baroness Coffey (Con)
Amendment 277 is not in this group, according to the list circulated today, unless there has been more than one of them.
Lord Kamall (Con)
My understanding is that it is in this group, but maybe other noble Lords can confirm. There is a slight disagreement between my noble friend’s and my understanding of that.
I repeat that important point made by the noble Lord, Lord Tarassenko: the cheapest initial purchase is not necessarily best in the long term. There is also a legitimate question about whether procurement requirements have become unnecessarily complicated, which the noble Lord, Lord Austin of Dudley, calls for in his amendment, around clarity and consistency about the objectives against which procurement decisions are assessed.
I turn to the wider concerns raised in this group about patient data, digital sovereignty and the security of NHS information systems. Patients need to have confidence that their data is secure and their privacy is respected. I quite often like to quote my favourite philosopher, Jimi Hendrix. I have cited this more than once. He talked about building castles made of sand that fall into the sea eventually. What we do not want is the single patient record or the federated data platform to be that castle made of sand that falls into the sea eventually because there is no confidence from patients and they want to opt out of the system. We have tabled our own amendments on the single patient record that speak directly to some of these concerns. I will return to those points when we reach that group.
The crux of the matter is Palantir, what people really think about Palantir and whether it should be here. When I was the relevant Minister, I was told quite clearly by my officials that Palantir had by far the best solution to deliver the federated data platform. We should acknowledge the contribution it has made in increasing discharges, reducing discharge times, identifying and contacting patients who need to come back, making sure cancellations are reduced, and all those sorts of metrics that we want to see.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am most grateful to noble Lords for their contributions to this debate. As before, I will focus on the amendments before us. I start with the future of the NHS federated data platform and the noble Lord, Lord Clement-Jones, who spoke to his Amendments 158, 159 and 172E, and the noble Baroness, Lady Bennett, who spoke to her Amendment 172B.
As I hope noble Lords will agree, decisions about public contracts must be made through fair, open and non-discriminatory processes, which is the point the noble Lord, Lord Kamall, was making. This is governed by UK procurement law and it ensures we get the best outcomes and solutions for the National Health Service. NHS England is reviewing the contract to determine whether it should continue, subject to standard contract management processes and government approvals. This process remains ongoing and decisions will be announced formally.
I can assure your Lordships’ House that the FDP operates under the direction of the NHS and each trust and ICB that has signed up uses it as it sees fit. Furthermore, Article 25 of the UK GDPR, which requires organisations to include data protection by design and default, already applies to the FDP. Were data to be anonymised as Amendment 158 proposes, it would prevent the delivery of national services such as national vaccination and screening, and key activity supporting the management, operation and provision of national health services.
I feel it would be helpful to set out the potential implications of Amendment 172B. When it was tabled, the usual channels received advice from the House authorities that the amendment would, in their view, risk making the Bill hybrid as it seeks to put in the Bill that the contract of one specific company is not extended. If the Bill is hybridised through amendment, those affected will have the opportunity to petition, after which the Bill will be referred to a Select Committee.
Lord Clement-Jones (LD)
Can the Minister confirm the date when the decision will be announced on whether or not there will be retendering of that FDP Foundry contract?
Baroness Merron (Lab)
I am not able to confirm the exact date, but I can say, as I said earlier, that the decision will be announced formally, so noble Lords will be made aware.
On the questions of security, resilience and sovereign capability, as raised in Amendments 53, 171 and 289 by the noble Lord, Lord Tarassenko, the Government share his determination to protect patient data and to support the strong UK digital health market. However, I am not able to commit to an NHS digital sovereignty strategy, nor additional legislation. Supply risk is not determined by nationality or jurisdiction alone. What matters is the data involved, who can access it, the supplies controls and the contractual protections in place. We already have robust safeguards. The Procurement Act 2023, about which much has been spoken, provides powers to exclude suppliers where appropriate, including on national security grounds. It also provides for setting data protection and cyber security requirements.
I note specifically the noble Lord’s concerns about the procurement of the single patient record, and I am looking forward to a more focused discussion, as I know all noble Lords are, on the SPR at a later Committee stage. I can confirm now that the procurement will have to ensure the resilience of our systems, how we keep within the UK jurisdiction and that the data remains under NHS control. The noble Lord, Lord Tarassenko, raised concerns that foreign laws could require an overseas supplier to give access to NHS data. We take that risk extremely seriously and aim to ensure that the legal, contractual and cyber-security safeguards are in place to avoid this.
I fully endorse encouraging domestic innovation, as I hope noble Lords are aware. As the Chancellor set out in the recent Budget, the Government will use public procurement strategically to back British firms to strengthen domestic capability and to build resilience in key supply chains. We will continue to promote international investment and trade and to open opportunities for British businesses at home and in markets around the world.
The noble Baroness, Lady Kidron, indicated her agreement with the noble Lord, Lord Tarassenko, in this area. The points on sovereign data being an asset will come back in the group beginning with Amendment 142, and again I look forward to debating that. We want a vibrant UK market for tech, and practical action is already under way. NHS England is engaging industry ahead of procurements, structuring opportunities to increase SME participation, and using social value to support good jobs and skills, which we all want to see.
I turn to Amendment 279A, tabled by the noble Lord, Lord Austin. He too raises the important question of accountability within this amendment, and we agree that contracting authorities should be accountable to the objectives of the Procurement Act, which already apply directly to covered procurement. The Act also provides transparency and oversight mechanisms, including powers to investigate compliance. The Procurement Act 2023 already requires publication of contract details for contracts worth over £5 million and, where applicable, key performance indicators and annual assessments of supplier performance against them. This makes a further NHS-specific annual reporting duty unnecessary in our view. For medtech, our value-based procurement approach further supports decisions focused on patient outcomes, total care costs, and longer-term value.
Lord Scriven (LD)
The amendment from the noble Lord, Lord Austin, refers to
“medical devices, consumables and services”.
There are two laws in place for procurement for the NHS: one for services and one for goods. What about the services? We have heard about the goods, but what about the accountability and feedback for services?
Baroness Merron (Lab)
I made reference to the Procurement Act 2023, and that is the guide by which we go.
Lord Scriven (LD)
It is for goods, but NHS services come under the 2022 health Act. There was discussion about whether it should have all fallen under one procurement law, but for NHS goods it is the 2023 Act, and for services it is the 2022 health Act that is applicable. If the Minister could write to me and place a copy in the Library, it would be helpful to see how the health Act also applies.
Baroness Merron (Lab)
So many health Acts. I would, of course, be very happy to do that.
I turn to Amendments 144, 147 and 160, tabled by the noble Lord, Lord Clement-Jones. I recognise the importance of ensuring that NHS IT and data procurements are fair and competitive, and protect the interests of patients and taxpayers. However, there is already extensive procurement law governing the department and NHS organisations. The Government agree with the objective of avoiding supplier lock-in. However, ownership of all connector IP is neither necessary nor the most effective means of achieving that. Appropriate licensing rights, interoperability requirements, open standards and exit provisions can protect portability and future competition without prescribing a single ownership model. Similarly, a blanket prohibition on suppliers that have previously provided free services could have unforeseen consequences, including for voluntary sector providers. Existing procurement rules provide safeguards against unfair incumbent advantage.
Lord Clement-Jones (LD)
The Minister mentioned existing procurement rules, and she gave a partial nod to my Amendments 144, 147 and 160, but said it was not always desirable for all those elements to be observed. Perhaps she could write and say which bits of those amendments—which are quite technical, I admit, dealing with interoperability, data connectors and the prevention of supplier lock-in—she means. It would be helpful if she could write and explain how the procurement rules that she prays in aid achieve some of those objectives.
Baroness Bennett of Manor Castle (GP)
The Minister referred to national security grounds being considered in the letting of these contracts. When we talk about national security, traditionally we have thought about hostile states proving a threat, but now we are in the context of the broligarchy—tech oligarchs who wield enormous power and influence, frequently opaquely held, with links to far-right politics and Governments who are funding far-right forces in the UK and around Europe. Is the Minister confident that that kind of national security threat is adequately considered when we look at contracts?
Baroness Merron (Lab)
That is not a matter I feel able to reply to in detail right now, although I will gladly write. However, to the best of my knowledge, the interpretation of what represents a threat to national security is set out and is understood.
Lord Tarassenko (CB)
I thank all noble Lords who have spoken. I think we have mostly sung from the same hymn sheet, with perhaps the odd discordant note—maybe even a few bars, maybe even a whole movement, some people might argue. I am grateful to the Minister for her comprehensive reply.
I found it heartening last week to hear the Secretary of State speak positively about sovereign data and sovereign AI—those were her words. We now have an opportunity to go from concept to implementation within the next two years—namely, the single patient record contracts; that is, not the FDP contracts but the new contracts for the single patient record.
I believe, and I believe that many other noble Lords agree with me, that we have a highly capable—world-leading, I would say—UK medical technology and software sector, with companies that are often university spin-outs now ready to scale up. None of my amendments is in contradiction with the Procurement Act. I believe these companies can win these SPR contracts on merit. We are talking about supporting UK excellence, but we need to remember that the US spends billions to support technology in a radically different, profit-driven healthcare system, which often produces software that has a very poor fit to the NHS. I am sure the noble Lord, Lord Lansley, will be able to tell us that the original EPRs, the electronic patient records, from companies such as Epic and Cerner were a poor fit because they were designed for billing purposes, not for optimising patient outcomes. We made that mistake with the EPRs; let us not make the same mistake with the SPR.
In general, because the UK businesses are much smaller than the Oracles, the Epics, the Palantirs and the IBMs, we need a level playing field. I suggest that we need a signal from the Government to those companies that the Government are keen for them, as was mentioned by the Minister, to use procurement strategically to back UK business. I think that signal is the NHS digital sovereignty strategy, and I believe we will come back to it on Report. I beg leave to withdraw my amendment.
Lord Rennard
“Duty as to a smoke-free EnglandIn the National Health Service Act 2006, after section 1CC (inserted by section 6 of this Act) insert— “1CD Duty as to a smoke-free England(1) In exercising functions in relation to the health service, the Secretary of State must act with a view to England becoming smoke-free as defined in section 7(1) of the Health Act 2006 (offence of smoking in smoke-free place).(2) The Secretary of State must, within 12 months of the day on which the Health Act 2026 is passed, publish a roadmap setting out how the health service will contribute to England becoming smoke-free, including interim targets and the stop smoking services to be commissioned by integrated care boards.(3) The Secretary of State must lay before Parliament an annual report on progress against the roadmap.””Member’s explanatory statement
This amendment would add a duty as to a smoke-free England to the Secretary of State’s health service duties, and require a roadmap and annual progress reports.
Lord Rennard (LD)
My Lords, I will speak first to my Amendment 279QA, which would require the Secretary of State to review the funding available for NHS stop-smoking services in England, including options for contributions from the tobacco industry. It is a moderate and, I hope, acceptable amendment in that it asks the Government to think about whether further funding to tackle the harms caused by tobacco should come from the hard-pressed taxpayer or from those companies that are responsible for the huge costs associated with smoking tobacco.
We need more onus on the tobacco industry to pay up from its huge profits to help reduce the huge damage done when it makes its victims addicted to nicotine. It would not in itself increase the financial burden on smokers, as funds would come only from profits, not consumers. I hope that the Minister will accept that my approach in this amendment is not about further taxes on unfortunate consumers. It is about the “polluter pays” principle being applied to tobacco companies.
Action on Smoking and Health estimates that smoking costs £44.8 billion in England alone every year. There is a huge financial burden on our NHS, our social care system and wider society through large-scale losses in productivity that are caused by tobacco smoking. Tobacco addiction places a huge burden on mental health, and it causes great damage through increased levels of ill-health generally, disability, and all the consequences that come from bereavement. My argument is simply that it is right that tobacco manufacturers, whose lethal and addictive products kill two-thirds of long-term users, should pick up more of the tab.
The APPG on Smoking and Health is arguing this at a time when the Government need to raise more funds and when they do not want to increase the burden on ordinary taxpayers. It is no wonder that, in opposition, Labour was emphatically in favour of this principle. On Report of the Health and Care Bill, the noble Baroness, Lady Merron, said that the principle
“strikes me as wholly pragmatic”.—[Official Report, 16/3/22; col. 297.]
Earlier in Committee, she said that such a measure had
“broad cross-party … and public support”.—[Official Report, 4/2/22; col. 1266.]
The noble Baroness, with her eloquence, helped to persuade the House to carry the amendment in support of considering a tobacco levy, by 213 votes to 154. In the Division, 86 out of 87 Labour Peers voted in favour of the principle of a tobacco levy. They included the noble Baroness, Lady Merron; the present Leader of the House, the noble Baroness, Lady Smith; the Deputy Leader of the House, the noble Lord, Lord Collins; and the Government Chief Whip, the noble Lord, Lord Kennedy. They cannot all have been wrong on this occasion.
The Treasury is reluctant to have such a hypothecated tax, however popular it might be, but the Treasury should consider how Prime Minister Andy Burnham has expressed his desire to extract revenue from businesses that do not make a positive contribution to communities. I simply ask: could there be any businesses in this country that are more negative in their impact on communities than the tobacco industry?
The Prime Minister and the Chancellor are desperately seeking ways of raising cash. Depending on the levy agreed, a levy could be applied to the profits of tobacco companies, raising perhaps £5 billion over five years. A very poor argument comes back from the Treasury to try to suggest that it might not raise very much because the actual level of the money raised would depend on the level of the levy, which it does not know and has not set. But there is great scope for taking taxes from tobacco companies’ enormous profits, and the revenue could be quite considerable.
I make a request to the Minister. Can she press His Majesty’s Treasury to meet the APPG on Smoking and Health, which strongly advocates the tobacco levy, to discuss this issue? The levy has been shown to be a revenue raiser, supported by 76% of adults in England. To fulfil the aims of the Government and all of us seeking to reduce further the prevalence of tobacco by helping smokers to quit, we need to do more and to find the money to pay for the action required.
In some respects we are going in the wrong direction, and we have to address that. We want to help the Government with their manifesto commitment to deliver opt-out smoking cessation support within routine care. Amendment 53A in my name would provide for a specific duty concerning a smoke-free England to be included in the Secretary of State’s health service duties and would require a road map for making further progress with annual reports to Parliament.
The world-leading Tobacco and Vapes Act will introduce a smoke-free generation from next year and marks the beginning of the end of the tobacco epidemic in this country. However, it is not job done. There are still 4.9 million smokers across the UK. We need a new target for ending smoking in this country. The previous Government had a target of Smokefree 2030, with less than 5% prevalence of smoking tobacco by that year; sadly, that target is now unlikely to be met.
I applaud the ambition of the Government with the “stopping the start” programme to try to prevent the tobacco habit being taken up in the first place, but we need a similar ambition for current smokers. Less than 5% prevalence would still leave millions of people smoking, and the Government should set a bold new target for when smoking rates will be less than 1%. We need a plan for how that will be achieved, a road map. This would set out which populations have the highest rates of smoking, where we are going to target our efforts and how we will do that. We are making progress. We know it can be achieved when we have clear, funded policies such as financial incentives, a bold target and system-wide change to support quit journeys. I beg to move.
Baroness Bennett of Manor Castle (GP)
My Lords, it is a pleasure to follow the noble Lord, Lord Rennard, and to agree with every word he said. I would have signed the amendment had I caught up with it.
I will speak to my Amendments 267 and 274 in this group. These line up very well with Amendment 224 in the name of the noble Baroness, Lady Walmsley, about a duty to promote public health. I do not think they are contradictory; they could both be included and would work together quite well. My Amendment 267 would add a new clause to establish a public health committee and health creation unit to promote public health and cross-government policy-making. At Second Reading there was a lot of discussion that this Bill is about institutional arrangements and has very little in it about actually delivering health; a number of amendments in this group, including mine, seek to address that.
This amendment builds on a proposal put forward by MPs at the Commons Committee stage. I am bringing it forward again because I do not think we can keep treating public health as the responsibility of one government department. We are in a terrible condition. Life expectancy gains have stalled and healthy life expectancy is falling. The latest ONS figures show that healthy life expectancy has dropped to its lowest level since records began in 2011 to 2013. Men in the UK can now expect just 60.7 years in good health and women 60.9 years. Those statistics represent millions of people spending more of their lives in poor health and reflect deep inequalities in our society.
Lord Young of Cookham (Con)
My Lords, I will speak to Amendment 224 on a duty to promote public health. When the Government came into office, they said they had three priorities:
“hospital to community … analogue to digital … sickness to prevention”.
I want to focus on the last. If the Government are going to achieve that ambition, it may require some rewiring of how the NHS works and how funding is distributed. Over the past few years, we have seen acute services taking a growing share of the budget. One understands all the short-term pressures on Ministers, who tend to ignore the long-term benefits.
Tucked away in the Budget Statement was a welcome and important statement. The Chancellor announced ring-fenced prevention spending that will bring down costs in the future. Hurrah for that; it is absolutely the right step to take. I wonder whether the Minister can answer a few questions related to that. First, how will preventive spending be defined? If it is too broad, it becomes meaningless; if it is too narrow, you end up with a number of very small pots. Will it include items that the noble Baroness, Lady Bennett, has just mentioned, such as the warm homes fund? Will it include adult social care? Do the Government plan to use existing definitions of preventive spending, or are they planning to invent a new definition of their own?
Secondly, if there is going to be a ring-fenced preventive spending pot in central government, will that then be distributed down the chain to ICBs, local authorities and GPs? Will it continue to be ring-fenced as it goes down? Thirdly, relevant to that, when will this be introduced? Will it be in the next spending round, or is it going to take longer than that?
Finally, I reinforce what the noble Lord, Lord Rennard, said on Amendment 53A. In earlier debates, I have very much supported this and may have moved some of the amendments myself. Given the pressure on government expenditure, not to explore further the potential of hundreds of millions of pounds, if not billions, from a levy, which does not, as the noble Lord explained, feed through into the consumer prices index—it is not reflected in the price of cigarettes, but comes from the profits made by tobacco companies—I hope the Government do not have a totally closed mind on Amendment 53A.
Baroness Cass (CB)
My Lords, I am sorry that the noble Baroness, Lady Walmsley, is not able to be in her place this evening. I had the privilege of serving on the Childhood Vaccinations Committee, which she very ably chaired. I think it will produce a report which Members of the House will find informative and helpful, and I hope the Government will feel similarly. During the course of that report, we spent a long time talking about the relative impact of problems in access and in vaccine hesitancy. Within vaccine hesitancy, multiple different factors affect how parents feel about vaccinating their child. Among those is medical disinformation. We need to understand more about that and what vaccination and the risks mean to different communities and cultures. Much of that work happens on the ground, on the front line, with community leaders, health visitors and GPs working locally. However, that is not a reason for us not to take a national strategic approach.
The second reason I signed this amendment is that it uses the term “medical disinformation strategy” and talks about anti-vaccination and medical disinformation. The Government need to think about how we tackle medical disinformation much more broadly than just within the vaccine arena. I have talked often enough in this House about my review, but I have not on any occasion put on record what it felt like to do that review and, more particularly, what it felt like and has continued to feel like in the two years since.
The disinformation about my review started six hours before the report was released. It was a funded disinformation campaign, and it continues to date. One of the extraordinary things that were said was that I did not speak to any trans people during the review. We spoke to the support and advocacy groups every four weeks and I spoke to the gender clinicians working at the Tavistock every two weeks. It was said that we threw out 98% of the papers on the subject, which was clearly nonsense. It was said that we did not publish the name of the author of the review—and what did “CASS” stand for, by the way? That was probably one of the most extraordinary ones. Then there are those that I take less seriously, which are more recent, on why I have supported the puberty blocker trial. These range from my being the victim of a Russian kompromat, having a trans child of my own, and—this is the best one—that somebody has kidnapped my cat and is holding it to ransom. I am not particularly concerned about the personal attacks, of which there are many, but I am concerned about the disinformation that misleads children, young people, families and clinicians who are looking after them.
During those last two years after the review, I worked first for NHS England. I declare that I am currently an independent adviser for the DHSC. Colleagues have been supportive, but the burden of what to do about the direct disinformation at the end of the day rested with me. DSIT, as it was, seemed to be the locus of how we dealt with disinformation at that time, but it did not own the strategy, and neither did NHS England or the DHSC—although the DHSC has been very supportive in trying to get a communication strategy in more recent times.
My point in going through all this is not as a “poor me” about my experiences, but because it should never come as a surprise to us that there is disinformation, which is going to be an increasing problem going forward. It is no more surprising than bed pressures and flu in winter. Therefore, I suggest to the Minister, who has been exceptionally supportive to me over these matters, that, in thinking about the structures of the NHS, we need to consider strategically how we will be prepared for disinformation strategies, not just in vaccine services or gender services but in many areas as they arise.
Lord Scriven (LD)
I will quickly talk about my noble friend’s Amendment 224, on the public health duty of Ministers of the Crown. I think most noble Lords would agree that, if we are going to deal with prevention and the determinants of health, it goes far beyond the department to deal with the issues there.
It is always interesting and actually vital to read final impact assessments, because you will find little gems in them. In the final impact assessment on abolishing NHS England, it says:
“The Secretary of State will retain existing public health”
duties. But the NHS England functions to be repealed are not given to the Secretary of State. It says:
“NHS England’s duty to consult with public health professionals to obtain advice on the discharge of its functions will be repealed and not transferred to the Secretary of State”.
I have a very simple question for the Minister. I declare an interest in that my husband is a former director of public health. Anybody in the medical world who comes into contact with a doctor from public health will say that they are a very strange creature; living with one, I can confirm that is the case—but professionally, they look at things very differently. They are not about one part of the body or one disease; they take a much more holistic approach to the determinants of health and population health. Why is the Secretary of State retaining public health functions but not taking NHS England’s function to sit down with, listen to and consult public health professionals when carrying out those directions? It seems a very strange system to take the functions but not have the duty to sit down with and listen to public health officials. If that duty is not transferred to the Secretary of State, what body in law does the Secretary of State have to sit down with and listen to that is composed primarily of public health professionals?
Baroness Pidgeon (LD)
My Lords, I shall speak to Amendments 223, 224 and 231 in the name of my noble friend Lady Walmsley, who cannot be in her place today.
Amendment 223 would require Secretary of State to lay before Parliament an annual report on the performance of routine, seasonal and targeted immunisation programmes, which sets out the action plan for the coming year to address areas of low vaccine uptake. The report must also cover all eligible cohorts within the national immunisation programme, use consistent measures across programmes and include data that enables inequalities in vaccine uptake to be tracked by geography and population group. It should be in addition to existing vaccination coverage reporting. This would enable vaccine accountability and make sure it remains visible following the removal of Section 7A, with clear reporting on how national oversight is being maintained and how delegated responsibilities to ICBs and providers are being delivered.
Lord Kamall (Con)
My Lords, I am grateful to all noble Lords who spoke to their amendments in this group. I will mainly touch on three points. First, on vaccines, I remember that, when I was the Minister who had to answer questions on vaccines during Covid, we were trying to work out how to tackle so-called vaccine hesitancy. One of the things we thought we had cracked was that we worked with local communities and faith organisations, which are trusted far more than whichever Minister happens to be on TV or even the Chief Medical Officer, even though he was a very trusted person. The interesting thing was that we tried to work with local communities, but we found that some churches were saying, “Don’t take the vaccine”. That was a challenge we faced. We thought we had cracked it by working with local organisations.
We have to be careful about distinguishing between misinformation and disinformation. They often have the same outcome. Misinformation, though, is quite often unintentionally spread, whereas disinformation is deliberately spread. We have to be aware of that.
Secondly on vaccines, there was a denial that anyone could come to harm from taking the vaccine, but any pill or therapeutic has risks. I remember when I went to take my first mRNA vaccine. I sat down with the nurses in my local surgery and asked, “How risky do you think this is?” They said, “Don’t worry, it’s safer than the pill”. That is not particularly reassuring for the women out there but, statistically, they were absolutely right. If you tell people that, for example, one in 10,000 might get heart inflammation or whatever then that will scare an awful lot of people but you are actually being honest about the statistics and the risk. There is a real challenge in being completely honest about the risks and the numbers, because everyone will think they might be that one in 10,000 so they will not take it. I really have not worked out how to crack that.
We then seemed to pretend that no one was harmed by the vaccine. It is true that, statistically, very few people—a very small percentage—were harmed or killed by the vaccine, but that gave rise to conspiracy theories about hiding the fact that people could be harmed by the vaccine. In reality, all medicines have a very small risk factor. It is about how we tackle that, because if we are too open about it then people will think they are the one in a million or the one in 10,000. That is a real challenge we all face.
The second thing I want to talk about is public health. Last year, I taught an MBA module on health policy. As part of that, I spoke to a lot of public health academics. One of the things I was astounded to hear from them was that they think that an awful lot of top-down public health does not necessarily work. We spoke about the example of sugar taxes. We feel good about them because there is less sugar in our drinks but, quite often, if people are not actually helped to change their behaviour then all they end up doing is spending more on their fizzy drinks, or they swap from the branded fizzy drinks to Asda or another supermarket’s own brand. We might feel good about it, but we have not actually changed their behaviour.
Far more effective is working with local community organisations. I have often mentioned one that I am very aware of, BRITE Box, which produces 38 meals a year for families. It gives them the ingredients, and it has tested the instructions and the menus. It has done a lot of academic research and found that what is very attractive to children and families are pictures with three or four bullet points. What quite often happens is that these families learn to eat and cook healthier meals together, which they love doing, and now that they have the 38 recipes, they carry on using them. As part of that, they learn to budget as well. That is something that top-down public health cannot do.
Our challenge is how to encourage more of these local community organisations, which understand the people whose behaviour needs to change to eat healthily on more of a budget, rather than always thinking that we should have a tax on something and that will change behaviour. Quite often, all it does is lead to people paying more for unhealthy food, rather than actually changing their behaviour.
I try to be consensual at times—maybe it is my 14 years in the European Parliament—but, for my third point, I agree with the noble Baroness, Lady Bennett of Manor Castle: we are not paying enough attention to AMR. Let us be honest about this. I remember that in the first Session after the General Election, when we swapped sides and Benches, I was asked to speak for the Opposition on a Question on AMR. The Minister at the time, the noble Lord, Lord Collins, said quite clearly that the Government were going to take a cross-governmental approach to tackling AMR, but we do not seem to have made any progress. I wonder whether the Minister has more information than I have to say what the Government are actually doing on AMR, particularly on a cross-government approach but also on international co-ordination.
All the amendments in this group raise important points. I look forward to the Minister’s response.
Baroness in Waiting/Government Whip (Baroness Hyde of Bemerton) (Lab)
My Lords, I am grateful to noble Lords who have tabled amendments in this group and want to take the opportunity to thank all the directors of public health across the country who are doing excellent work, close to the ground, day in and day out, as mentioned by some noble Lords. I also add my thanks to the noble Baroness, Lady Cass, for sharing her personal experiences on disinformation and misinformation. It is much appreciated.
I turn to Amendment 224 tabled by the noble Baroness, Lady Walmsley—with thanks to her colleagues for speaking to it—and to Amendment 267 tabled by the noble Baroness, Lady Bennett. We agree that improving health and reducing inequalities requires actions beyond the NHS, across housing, education, employment and environment. Indeed, this was raised in an earlier group, where we discussed the fact that good health cannot be the sole preserve of DHSC. Ministers and officials already work across government to ensure that health evidence informs decisions. That includes some things mentioned by the noble Baroness, Lady Bennett, including action on poor-quality housing through the fuel poverty strategy, the decent homes standard and Awaab’s law, on work and health through the Keep Britain Working review—as alluded to in our first group of amendments today—and on air pollution through the environmental improvement plan. On Amendments 267 and 224, we are not persuaded that prescribing internal government structures or introducing a broad duty on Ministers in primary legislation is necessary. The Secretary of State already has a statutory duty concerning public health protection and powers to improve the health of people in England. Ministers also routinely consider the health implications of their decisions and work collectively in the public interest. Furthermore, through the English Devolution and Community Empowerment Act, we have introduced a duty for combined authorities, combined county authorities and mayors to have regard to the need to improve health and reduce health inequalities in the exercise of their functions. This duty complements that pre-existing local authority health improvement duty and role.
On the topic of public health, the noble Lord, Lord Scriven, raised a specific question about the small print in the impact assessment. As a statutory arm’s-length body, NHS England’s powers and duties are necessarily set out in statute, and it has a different legal role and responsibilities from the Secretary of State and the Department of Health and Social Care. While it was appropriate for NHS England to be bound by a duty to seek advice to ensure that it effectively discharged its functions, it is not necessary to bind the Secretary of State in that way. However, I can assure the House that the Secretary of State will continue to seek advice as appropriate.
The noble Baroness, Lady Walmsley, tabled Amendments 231 and 223. Although she is not in her place, I want to thank her for her work as chair of this House’s Childhood Vaccinations Committee. As other noble Lords have mentioned, inaccurate information can undermine confidence, but uptake also depends on access, deprivation and awareness. National communication, support for front-line professionals and monitoring of emerging narratives already address misinformation alongside these wider barriers. A statutory strategy focused solely on disinformation risks duplicating activity and reducing flexibility. The Government are acting to improve uptake more broadly, including by making it easier for families to get vaccinated, giving families more information about vaccination, investing in new digital services for vaccination and organising the NHS to promote improvements in uptake. To give an example, we have reformed incentives for general practice to incentivise improved uptake in areas with low uptake, rather than rewarding only those with high uptake. That can then support best practice among general practice and address the inequities in uptake.
On Amendment 223, UKHSA and NHS England already publish extensive, timely data on routine, seasonal and targeted immunisation programmes. Requiring consistent measures in primary legislation could impose artificial standardisation where programmes are not comparable. Instead, our priorities are to improve existing reporting and act on the evidence. This Government take seriously the fact that misinformation and disinformation does and can undermine confidence, but it is one factor among several. We would also include in that the role of social media, which the noble Baroness, Lady Pidgeon, mentioned. That is why we are working across a number of measures, around marketing campaigns, supporting health professionals to have those conversations with people who are vaccine-hesitant, as well as monitoring and responding to emerging narratives and trying to debunk, by “prebunking”, if I may, that kind of misinformation and disinformation.
I turn to Amendment 274 on antimicrobial resistance from the noble Baroness, Lady Bennett. As she said, this is being addressed through the United Kingdom’s 2024 to 2029 AMR national action plan. A stand-alone review of annual AMR-related deaths could duplicate the work already under way in that plan. UKHSA undertakes continuing surveillance and is developing a mortality metric to improve our understanding across different infections and settings. I hope that noble Lords will agree that continuing surveillance, modelling and reporting will provide more durable insight than a one-off statutory review.
Baroness Cass (CB)
Can I ask the Minister one more thing? The Government are being active on vaccines, as she said, but disinformation—the noble Baroness, Lady Pidgeon, made this point as well—goes further than just a vaccine strategy. It is really about the Government having a disinformation preparedness approach in the same way as they have preparedness for a pandemic, because there will be disinformation campaigns that we have not yet anticipated in other areas. Are there further thoughts on how that might be approached?
Baroness Hyde of Bemerton (Lab)
I thank the noble Baroness for that question. The Government are aware of the whack-a-mole nature of this and the constantly evolving picture. There are things that we cannot even imagine today that tomorrow will seem inevitable. I will write to her with a more comprehensive reply. We absolutely accept that this is not just about vaccines and that there is work to do.
Lord Rennard (LD)
My Lords, I thank all noble Lords who have spoken in this debate and particularly appreciate that we are all on the same page on the principles of these issues. However, when it comes to the tobacco levy, the Government Front Bench were more on the same page as us when they were in opposition than they are this evening.
I reiterate my invitation to the Treasury to come and meet the APPG on Smoking and Health to discuss these issues. We know that increasing the price of cigarettes has reduced consumption, but we worry about the fact that many smokers are poor. Often, they are poor because they smoke—and are in ill health. We want to improve their health. If we simply tax them more and not the tobacco companies, the wrong people will be paying for the damage caused by the industry. Looking at models, we see that in the pharmaceutical industry it is perfectly possible to tax profits while preventing price increases hitting the consumer. That is the principle we must examine.
On that note, I beg leave to withdraw my amendment.
Lord Lansley
“(za) in subsection (1), after paragraph (j) insert—“(k) such other services and facilities as are required for persons with a primary health need arising from a progressive or deteriorating disease which is reasonably expected to continue for the remainder of the person's life, including where the person's condition is intermittent or fluctuating, and without regard to the rate of such progression or deterioration or whether a person is entering a terminal phase of their life.””Member’s explanatory statement
This amendment would ensure that a wider range of serious chronic diseases, such as severe dementia, would qualify for NHS Continuing Care and not have eligibility restricted on grounds that the condition is fluctuating or is not deemed to be in a terminal phase.
Lord Lansley (Con)
My Lords, this group is essentially about the processes of commissioning. Other groups will touch on these issues, but Amendment 54 raises the commissioning of NHS continuing care. It is grouped with amendments that relate to other aspects of specialised commissioning.
I thank the Minister for her letter earlier today saying that she will be able to tell us quite soon what the division of responsibilities for commissioning between the national and the ICB level will be. She expects it to be broadly similar to the practical distribution of commissioning responsibilities now. That is a comfort to some of us in understanding how this will work in future. She was also kind enough to tell us, in the spirit of “the more things change, the more they stay the same”, that, following the disbandment of the commissioning support units, we will have the office of pan-ICB commissioning—which sounds awfully like the recreation of commissioning support units.
I am in favour of having commissioning support units. I was originally in favour of having an opportunity for independent support to commissioning, not just NHS-delivered support for commissioning and competition between commissioners in who provided them with that expertise. I will not get that, obviously, but having the ability to provide support to the commissioners collectively is clearly the right thing to be doing.
I do want to just say that, from my point of view, there is an issue about specialised commissioning, which the Minister’s letter touched on: the question of standards. When we took the responsibilities for some specialised commissioning away from primary care trusts, we found that there was substantial variability in what was being commissioned, how it was being commissioned and the standards to which it was being commissioned. One of the most expensive aspects of the reforms that we had to undertake was that we brought them to the same standard, the highest standard, which over recent years has been guided by the publication of the National Institute for Health and Care Excellence’s guidance and standards.
I hope that when we come to debate specialised commissioning in more detail, we will also look at ensuring that we continue to meet those high standards, notwithstanding that there is a difficulty in reconciling that with the budgetary decisions on commissioning that must be made by individual ICBs if they are responsible for specialised commissioning. We will have to find out precisely how that divides itself.
I do not want to say any more about specialised commissioning. I want to focus on Amendment 54, which is intended to deliver a very specific question to Ministers that I hope we will follow through. A couple of weeks ago, we all agreed during Oral Questions that this Bill is a big opportunity to improve social care. The Minister herself said that. Well, it is. There will be two or three debates, of which this is the first, at which I hope to bring forward ways in which this Bill can be used to undertake essential aspects of the future shape of what a national care service looks like.
I do not have to go into all the aspects of what a national care service is, but one building block in making it happen is for the NHS to take a greater and more substantial responsibility for providing continuing care to people who have a primary health need. Noble Lords may say, “But does it not do that now?” The point is that, presently, two-thirds of access to NHS continuing care essentially comes through the fast-track route. That pathway tool is very much focused on those who are reaching what is described as a rapidly deteriorating condition leading to a terminal phase of life. Unfortunately, this means there are very many who have a condition that I think NHS continuing care was, and is, intended to provide for, where the NHS takes responsibility for a person who has a primary health need which arises from a progressive or deteriorating disease expected to continue throughout their life. That is the fundamental definition, but that is not what the NHS is presently doing.
The Prime Minister himself gives us the classic illustration: he says, and said again on 1 September this year, that the NHS should support people with dementia as well as it supports people with cancer. This is precisely what does not happen. NHS continuing care is often available to people with a terminal diagnosis of cancer who are rapidly deteriorating, but, for a variety of reasons, somebody with severe dementia does not get it. They do not get it because it cannot be established: there is no prognosis in the way there often is for cancer. They do not get it because they are often in a situation where, from the point of view of the assessment, there is less clinical intervention, even though a primary health need gives rise to the condition; it is often intermittent, fluctuating and not predictable; and there are often episodes when somebody who is undertaking assessment will say, “Well, at the moment, this is manageable without all the clinical interventions that would be required if this were a cancer diagnosis”.
So I think we have a serious issue. This is why my Amendment 54 says that we should construct the legislation in a form that requires the persons using this decision support tool for NHS continuing care to have regard to whether it is a primary health need that gives rise to a patient’s condition and whether it is a long-term condition they will have throughout the rest of their life, in which case the NHS should therefore take on the responsibility.
Given the hour, I do not want to dwell on any further details or examples, but I think the comparison is very straightforward. It is increasingly clear that the reason people do not get access is because of the failure to observe the principle that the NHS should take responsibility where a primary health need gives rise to that social care requirement; in practice, principally for budgetary reasons, that has been narrowly confined. If the Prime Minister, as I understand it, is looking towards the state taking a greater responsibility, a very good starting point for that to happen would be for the NHS to take responsibility for those people whose social care requirement arises from a primary healthcare need. That is the principle of purpose of Amendment 54, which I beg to move.
Baroness Grey-Thompson (CB)
My Lords, I have Amendments 57, 73 and 80 in this group and will also speak briefly to Amendment 58, which is about allergies. Natasha’s Foundation submitted thorough and useful information to the task and finish group that I ran for the Department for Transport on improving aviation for disabled people. There needs to be more consideration of this area. Obviously, there is much movement, but there are still many issues.
The principle behind my amendments is national protection for all specialised services regardless of whether they remain nationally commissioned or transfer to integrated care boards. Patients must not lose safeguards because the identity of the commissioner changes. Nationally consistent standards, oversight, quality assurance and accountability must be statutory safeguards, not optional administrative assurances. Local flexibility must not become local inequality.
Amendment 57 says that a national framework is needed. The current wording may be narrower than the intended protection for all specialised services, but I seek ministerial assurance on how the universal principle will be secured. Some highly specialised services require dedicated condition-specific national frameworks. Generic service specifications cannot always protect the expertise, pathways and critical mass that they need. Amendment 73 seeks annual reporting to Parliament, which must cover all specialised services irrespective of the commissioner, so that changes in access, quality, outcomes and variation remain visible. Amendment 80 seeks clear national assurance and Secretary of State accountability; these are needed, including where commissioning responsibility sits locally.
It is important to have a robust impact assessment before any transfer happens, looking at clinical risk, patient safety, equity, workforce, specialised networks, financial sustainability and the effect on smaller patient populations. I am specifically interested in those with spinal cord injuries. I do not have a traumatic injury; I have spina bifida. Spinal cord injury services illustrate the stakes. There can be complex lifelong needs, but there is a limited number of specialist centres and there are risks of fragmented pathways to rehabilitation and follow-up. Government-NHS England discussions about a wider framework are welcome, but policy commitments can change and Parliament should secure enduring duties. I thank the Minister for the letter we received this morning and look forward to more information on commissioning, but how will universal coverage, condition-specific protections, enforceable national oversight and transparent parliamentary reporting be guaranteed?
Lord Hunt of Kings Heath (Lab)
My Lords, I have Amendments 58 and 71 in this group and I have added my name to Amendment 59 from the noble Baroness, Lady Pidgeon. I endorse everything that the noble Baroness, Lady Grey-Thompson, has said. At heart, the issue is that there is a lot of concern about ICBs’ ability to discharge the commissioning responsibilities they are being given. I refer my noble friend to a report on wheelchair commissioning issued this morning by the Public Service Ombudsman. She has used individual complaints to produce a thematic report on the effectiveness of ICBs in commissioning wheelchair service. She has found that ICBs are absolutely hopeless at doing this.
We will debate wheelchairs later in the Bill, but we then turn to allergies in my Amendment 58 and, again, one sees a depressing picture. It is a mammoth issue. More than 20 million people and approximately 40% of children have been diagnosed with an allergy. Any parent or grandparent knows the difficulty of getting access to the system. The National Allergy Strategy Group, to which I pay great tribute, has produced a framework which will ensure much better commissioning of the provision of services. It found that only 26 of England’s 44 ICB areas have a local adult allergy service. It makes you wonder why on earth we do not have an allergy service in each part of the country. Then you come to the specialist services, which are often represented by small NGOs that have no chance whatever of relating to ICBs. That is why they want a national commissioning process, because that is the only way that they can expect to be heard.
ICBs do not have the reputation of being open. They do not often respond to representations made to them. In fact, they have little contact with parliamentarians. This is at the heart of why there is concern about this process. The Government’s decision to reduce management costs also brings concerns about their capacity. In the end, we all want some assurance that ICBs will be beefed up and that the unit which the noble Lord, Lord Lansley, referred to is going to do the job for many of them, because what is the point of all these ICBs trying to reinvent the wheel? Why not produce some standardised commissioning and then help them commission and monitor it? That is where you get the benefit of what the Government are seeking to do, in delayering and reducing management costs and bureaucracy, but it has to be done in a way which does not leave all these services at the mercy of very varied ICBs.
Baroness Scott of Needham Market (LD)
My Lords, I have tabled Amendment 65 to Clause 15 on the topic of accessible patient involvement. It seeks to ensure that the arrangements for involving patients in commissioning decisions are accessible to those living with long-term, complex or fluctuating health conditions. I welcome the Government’s decision to retain and strengthen Healthwatch England and local Healthwatch organisations. It is an important recognition of the value of independent patient voice, and I am pleased that Ministers have listened to the concerns raised across both Houses and beyond. However, retaining that independent patient representation is only part of the picture. We must also ensure that the mechanisms through which patients are consulted and involved in the decisions which affect their care are genuinely accessible.
I take a close interest in ME. I have a family member with it and I am a member of the all-party group. For people living with severe or very severe ME, conventional forms of consultation can be extremely difficult and quite often impossible. Attending meetings, participating in lengthy phone calls or completing detailed questionnaires can worsen some symptoms considerably. I have spoken about ME, but there are many other conditions for which the same can be said. If patient involvement arrangements are not designed with these limitations in mind, there is a real risk that those people with the greatest need will have the least opportunity to influence the services which should be supporting them.
This concern is particularly relevant given the evidence of poor access to services now. Action for ME’s 2026 big survey gathered responses from more than 5,000 people living with ME and long Covid. They found that 83% of respondents reported barriers to accessing NHS ME services. I was also struck by the large number in the survey who were not able to access any kind of healthcare at all, including routine screening. This is totally unacceptable. We cannot expect services to meet the needs of these patients if they are effectively excluded from the decisions about how those services are designed and commissioned.
My amendment is very modest. It would require the Secretary of State to take reasonable steps to ensure that patient involvement arrangements are accessible and inclusive, with particular regard to disabled people and those with long-term, complex or fluctuating conditions. This could mean greater flexibility in how people contribute and how they are consulted. It needs to recognise the particular circumstances in which patients can participate. It will require a little imagination and quite a lot of empathy, but it ought to be possible. I would therefore welcome the Minister’s assurance that these patients will not be overlooked in the Government’s arrangements for patient involvement and ask whether she would consider putting something in the guidance to make sure that it happens.
Lord Scriven (LD)
It is a pleasure to follow my noble friend. I want to come back to the points that the noble Lord, Lord Hunt, made. I believe we are coming to a point in this Bill for us to make reasonable amendments and suggestions. Either we can continue to go down the road without the detail and let the service reorganise itself, or we can start to get some serious detail, particularly regarding specialised commissioning and the capacity of ICBs.
Just to understand, there are about 154 specialised services that are commissioned. Already, around 70 of those are commissioned via ICBs under delegated direction from NHS England, and the rest are commissioned centrally by NHS England. What the Government are asking is for the cuts to be made to staff, for the staff to go, and then for the detailed skills and knowledge that are required for the specialised commissioning to come after that process. The National Audit Office has put out a report which questions, even on existing duties, whether ICBs have the skills, knowledge and breadth to carry out what the Government want.
With these extra services, it could be that ICBs, the delegated strategic commissioners, cannot commission what Government wish them to commission. The noble Lord, Lord Hunt, and I both got quite cross with the then Minister, the noble Lord, Lord Kamall, during the passage of the 2022 Act, that things were happening in the system before Parliament had made the decision. That is what is beginning to happen again; things are happening. The offices for pan-ICB commissioning are not new; they were asked to be determined in April 2026. They were in the impact assessment for the abolition of NHS England, so they are already known about. The key issue is: what services are they going to have to give a joint response for? Will we have the list of specialised commissioning services carried out by ICBs and the Secretary of State by Report? Is that a commitment the Minister can give? If not, we cannot make a reasonable decision on Report about specialised commissioning with the depth and breadth of knowledge that is required. Can the Minister give us that commitment?
As the offices for pan-ICB commissioning—OPICs—were selected in April, can the Minister commit to giving us their duties and the budgets they will have, or will be able to direct, in writing before Report? What powers of direction will the Secretary of State have for consistency of ICB specialised commissioning, and can those be with us by Report? These are important questions that need to be answered because, if not, we will be getting to Report, being asked to support specialised commissioning with two bodies—the Secretary of State and ICBs—and, particularly for ICBs, we will not know whether they have the capacity to do it. I do not think that this House will be able to make a decision about whether it is reasonable, safe or justified for us to continue suggesting that this is a route for ICBs to commission.
Baroness Cass (CB)
Briefly, I support the comments of my noble friend Lady Grey-Thompson and the noble Lord, Lord Hunt, and thank the noble Baroness, Lady Pidgeon, for Amendment 59, which I fully support. It is all right for me to support all of these people, because according to the best disinformation sources, I am in the pay of the Tories, but not the other parties. I did hesitate over whether I should allow a friend on the Opposition Benches to buy me a cup of tea the other day.
On a serious note, I worry, as others do, about ICB capabilities, and my noble friend Lady Finlay and I have spent years struggling with a postcode lottery on the commissioning of specialist palliative care services for children. They are commissioned at the wrong level, and therefore vary hugely from ICB to ICB, and should be commissioned at a higher level. The notion of greater devolution fills me with anxiety, so I fully support that amendment.
Lord Sharkey (LD)
My Lords, I will speak mainly to Amendment 74, which is in my name and those of my colleagues, the noble Baronesses, Lady Chisholm and Lady Sater, and I am grateful for their support. I declare an interest as chair of the Specialised Healthcare Alliance—SHCA—a coalition of nearly 140 patient organisations and corporate supporters campaigning on behalf of people with rare and complex conditions. There are 3.5 million people in the UK living with a rare condition, and I have heard at first hand how vital specialised services are in ensuring that they receive the best possible treatment, care and support. The Health Bill before us has potentially significant implications for how these services will be commissioned in future.
Amendment 74’s purpose is simple: to ensure that specialised commissioning, whether undertaken by the Secretary of State or ICBs, continues to be informed by a strong national clinical leadership and specialist clinical advice. One of the great strengths of the current specialised commissioning system is the clinical infrastructure that supports it. There are national clinical directors; national specialty advisers, who are practising clinicians working part-time at NHS England to provide clinical leadership, advice, input and support; and clinical reference groups, which bring together healthcare professionals, patient representatives and other experts to help to design, monitor and improve specialised services. This includes supporting the development of national standards.
As we move towards the abolition of NHS England, SHCA members are asking what this will mean for the future of clinical leadership in specialised commissioning. At present there is considerable uncertainty. I have heard from individuals sitting on clinical reference groups, for example, who still do not know whether their role will exist in a few months’ time. The purpose of Amendment 74 is not to prescribe a particular organisational model. Rather, it is to establish an important principle that the planning, design, delivery and monitoring of specialised services should continue to be informed by clinicians with the relevant expertise.
As commissioning arrangements become more dispersed, national clinical leadership arguably becomes more important, not less. The Government have stated that national standards for specialised services will remain a priority, but it is unclear how those standards will be developed, maintained and monitored without the clinical infrastructure that underpins it today. I anticipate that the Minister will reaffirm the Government’s commitment to clinical leadership, and I would welcome that, but what would provide real assurance to patients and clinicians is greater clarity about how that commitment will be delivered in practice. In that spirit, can the Minister clarify what discussions have taken place regarding the future of national clinical directors, national specialty advisers and clinical reference groups? In general, how do the Government intend to ensure that specialised commissioning continues to be shaped by the strongest possible clinical leadership and specialist advice—and, of course, the patient voice?
I turn briefly to Amendments 57, 73 and 80 from the noble Baroness, Lady Grey-Thompson, to which she has spoken so eloquently. Together, they call for greater security of the delegation of specialised services and clear reporting mechanisms, something that SHCA members have repeatedly called for. The right checks and balances must be in place but currently they are not. For example, under NHS England, delegation decisions have been informed by formal assessments of service suitability and service readiness alongside board approval. No equivalent to this is set out in the Bill. The publication of an impact assessment before any specialised service is delegated to ICBs is a proportionate and reasonable safeguard. Before such a significant commissioning change is made, it is only logical to properly consider factors including patient safety, clinical outcomes and equity of access.
I also support the amendment from the noble Baroness, Lady Grey-Thompson, calling for an annual report on the commissioning and performance of specialised services. The Health Bill allows responsibility and, for the first time, legal accountability for specialised services to move away from the national level and towards ICBs. This makes transparency more important than ever, but a number of important questions remain unanswered.
For example, the Government have stated that there will be,
“enhanced oversight of ICB specialised commissioning to monitor compliance with national standards”,
but how will this oversight operate in practice? Some services have national standards that are more than a decade old or, occasionally, no national standards at all. What is the process for updating these? How will transparency be improved, given the current lack of publicly available data on whether national standards are being met? I recognise that we do not want to overload commissioners and providers with numerous reporting requirements. However, given that there are more than 150 specialised services, accounting for approximately 14% of the NHS budget, a single annual report does not seem an unreasonable expectation.
My questions for the Minister are straightforward. If the Secretary of State or individual ICBs fail to meet national standards, how will we know and what action will follow? In that context, does the Minister agree that existing accountability mechanisms, such as the NHS oversight framework, are nowhere near granular enough for specialised services and that an annual report would fill an important gap in accountability? I look forward to the Minister’s reply.
Baroness Chisholm of Owlpen (Non-Afl)
My Lords, feeling invisible, constant uncertainty, high rates of distress, caregiver burnout: these are only four of many problems facing those suffering from rare disease. That is why my name is on the amendments from the noble Baroness, Lady Grey-Thompson, and the noble Lord, Lord Sharkey. We have heard from the noble Baroness, Lady Grey-Thompson, about the importance of impact assessments. I am vice-chair of the Specialised Healthcare Alliance, along with my fellow vice-chair, the noble Baroness, Lady Sater, and the noble Lord, Lord Sharkey, is chair. It plays an important role in specialised services. I support the requirement for an impact assessment before any specialised service is delegated to ICBs. All that the noble Baroness, Lady Grey-Thompson, said makes a brilliant case for this.
I am really concerned that we still lack an overarching assessment of what the Bill could mean for specialised services as a whole. We need to have assurances on how the Government will assess and monitor the cumulative impact of changes on specialised services. I hope the Minister can reassure us on this point.
I strongly support what the noble Baroness, Lady Grey-Thompson, said about the importance of annual reporting. In fact, that is already standard practice in other major areas of the health service—for example, the newly established National Cancer Board. Surely the Minister must see that how important the tool of annual reporting is for driving accountability and improvement in cancer services. In which case, surely the same principle should apply to specialist services.
My name is also on Amendment 74 in the name of the noble Lord, Lord Sharkey, on the importance of clinical leadership. Given the number of people affected and the complex conditions involved, there is a strong case for a senior clinical leadership to provide strategic oversight across care, research and policy. The Future for Rare campaign, which the SHCA supports, is calling for a national clinical leader for rare conditions in each UK nation. Given the Government’s commitments to appoint a dementia tsar and a national clinical head for brain cancer, does the Minister agree that a similar role for rare conditions merits consideration? I look forward to the Minister agreeing to these very small but very important amendments.
Baroness Sater (Con)
My Lords, I will speak briefly in support of Amendment 74, to which I added my name, and I fully support all that has been said by my friend, the noble Lord, Lord Sharkey, and my noble friend Lady Chisholm. I declare an interest as a vice-chair of the Specialised Healthcare Alliance. I also put on record my support for Amendments 57 and 73 tabled by my friend, the noble Baroness, Lady Grey-Thompson. She made some very compelling points, particularly on the importance of proper scrutiny, transparency and accountability as we move towards these new commissioning arrangements. It is vital that we understand the impact of these changes and have the means to monitor whether they are delivering the right outcomes for our patients.
On Amendment 74, there is just one further point I would like to raise: the importance of patient and public involvement. While much of this debate has focused on clinical expertise, it is important that we recognise that clinical reference groups are also a key mechanism for patient and public involvement. If they are removed without a credible alternative, that patient voice risks being diminished. These voices are incredibly important. Through my work with the Specialised Healthcare Alliance, I hear at first hand from our coalition of nearly 400 patient organisations, campaigning on behalf of people with rare and complex conditions, just how important this involvement is.
There is no substitute for hearing directly from those with lived experience. Their perspectives are invaluable, and it is important that they continue to be heard as these new arrangements take shape. Will the Minister therefore set out how the Government intend to maintain and, ideally, strengthen patient and public involvement in specialised commissioning? In particular, I would welcome clarity on what role the new offices for the pan-ICB commissioning will play in supporting that engagement and ensuring that the voices of patients and their organisations continue to be heard.
I hope the Minister can provide some reassurance on this because, ultimately, the voices of patients and those who represent them must remain at the heart of specialised commissioning. I look forward to hearing the Minister’s response.
Lord Harlech (Con)
My Lords, I have been listening with great interest, and I am still none the wiser as to why my amendment has been crowbarred into this group. But I suppose it is quite apt to be discussing the medical situation of Reserve Forces personnel on Armistice Day. I declare my interest as a serving officer in the Army Reserve.
Amendment 279QE would require a health body, when dealing with an individual, to make arrangements to establish and record whether that person is a serving member of the Reserve Forces and then to have due regard to that individual’s need to meet the medical and dental fitness standards required for call-out. This amendment was debated at the Committee and Report stages of the Armed Forces Bill and I bring it here because, with respect, the reasons given for not accepting it do not survive examination. I should add that those answers came from the Ministry of Defence rather than from this department. I saw the noble Baroness, Lady Antrobus, in her place earlier and thought that perhaps the MoD had put her up to knock this one back again.
The first reason given was that the amendment risks undermining the principle that National Health Service treatment follows clinical need rather than employment status. My proposed new section says the opposite in subsections (2) and (7). More concretely, this Bill does not itself proceed on that principle without qualification. Clause 12 substitutes a new Section 3B into the National Health Service Act 2006, allowing regulations to require the Secretary of State to arrange
“services or facilities for members of the armed forces or their families”,
and subsection (4) of that new section defines them as including the Reserve Forces. The Bill before this Committee, therefore, already contemplates commissioning by reference to service status and names reservists when it does so.
Nor is the principle novel in practice. On Report on the Armed Forces Bill, the noble Lord, Lord Stevens of Birmingham, reminded the House that from 1953 until at least 1997,
“certain classes of veterans from the First and Second World Wars received priority treatment for certain conditions”,
and that today
“merchant seafarers receive fast-track access for routine care under the Dreadnought Medical Service on offer at St Thomas’ Hospital so they can get back to sea”.—[Official Report, 20/10/26; col. 608.]
Baroness Barker (LD)
My Lords, I have shared with the House the experience of caring for somebody with a very rare neurological condition. It was because of that that, a few days ago, I went to the meeting that the Minister was good enough to organise with people from NHS England, where we discussed this very topic with them. I think they were meant to assure noble Lords that the transition from NHS England to ICBs would be a step forward, but they did not—they really did not. I echo the point made by my noble friend Lord Scriven that we are still awaiting the detail on those 150 conditions that are currently commissioned by NHS England, 70 of which will supposedly be transferred down to ICBs, and how that will work. I know people who work in ICBs and have a great concern that, because they have been left in limbo about their employment status for so long, there is a haemorrhaging of staff out of those bodies. I do not know whether there will be the clinical experience and corporate knowledge within those bodies to take on the enhanced commissioning role.
I just want to pick up on what the noble Lord, Lord Lansley, said about continuing healthcare. If noble Lords think that SEND is a scandal, they have not paid any attention to what is happening in continuing healthcare. People who have complex conditions, from which they are never going to get better, get shoved around, batted back and forth between social services and particularly the health service, like hot potatoes. The summer before last, an edict went out that lots of people had to be assessed for continuing healthcare. They never got it. There was never a hope that they were going to get it. They just had to go through a cynical process that somebody thought up centrally and shoved down the line. I went through it—we went through it—and I know other people who went through it.
I wish the Minister could have been there to listen to those people as they said, “I can cope, but the NHS—that’s going to break me”. The continuing healthcare system is an utter scandal. I am really glad that the noble Lord, Lord Lansley, has begun to shine some light on it.
Baroness Pidgeon (LD)
My Lords, this has been a really interesting and important debate, trying to tease out many of the issues and concerns with specialist commissioning in the new structures set out in the Bill, and the worries about ICBs—their capability and capacity—and the access to services across the country.
I have two amendments in this group, which I will try to talk to briefly. Amendment 59, to which the noble Baroness, Lady Cass, and the noble Lord, Lord Hunt of Kings Heath, have added their names, seeks to require the Secretary of State to have regard to the specific needs of children and young people when considering devolving responsibility for specialist commissioning services. This has wide support across the sector.
Children and young people make up around 20% of the overall population. Therefore, commissioning arrangements designed at a scale for adults just do not work for the small scale required to be effective for children. Many children are dependent on specialist commissioning, and it is essential for the provision of care for rare diseases and complex conditions, such as childhood cancers. Children are disproportionately affected by rare diseases: 75% manifest in children. The benefits of specialist commissioning being centralised and co-ordinated at a national level are clear, given the small number of patients.
The Health Bill’s direction to split commissioning is of huge concern. There is huge uncertainty out there. We have been in this position before because specialist commissioning, as was mentioned earlier, had been devolved to primary care trusts. They experienced many of the concerns that have been raised today. The previous report by the noble Lord, Lord Carter, recommended that specialist commissioning should be overseen at a national level. We need to learn the lessons from this and not repeat the same mistakes. I hope that before any delegated arrangements are made for children and young people’s specialised services, full consideration is given to the impact on those services.
The other amendment I have in this group is Amendment 279N. I still cannot believe that access to IVF treatment is not equal across the country. Your chance of being able to have a baby is decided by NHS bureaucracy and where you live, rather than clinical guidance and your health. You can have people living in roads next to each other and they can have one round of IVF or three rounds of IVF, despite NICE having recommended three rounds of IVF. We have seen the provision continuing to be reduced. Kent and Medway cut its services earlier this year from two to one and also lowered the age when someone can have treatment from under 40 to under 38. Sussex slashed its services last year from three cycles to one, and now all 10 boroughs in Greater Manchester are reduced to one. Only two of the 38 ICBs offer the NICE-recommended number of three cycles of IVF. Fertility challenges affect one in six people. The physical and psychological impact is huge.
I know the Minister is hearing all our concerns that we keep raising throughout the Bill. I do not feel we are getting much back from the Minister. But surely this is one area where there might be some movement. I urge the Government to look carefully at this and the other amendments in this group. I look forward to the Minister’s response.
Earl Howe (Con)
My Lords, I start by welcoming Amendment 54, as tabled by my noble friend Lord Lansley. It raises an important concern about eligibility for NHS continuing care. Someone suffering from a serious chronic condition, including severe dementia, should not find themselves disadvantaged in comparison with someone with terminal cancer simply because their condition fluctuates or because they are not considered to be approaching the end of life. Eligibility should be determined by the intensity and complexity of a person’s needs rather than by arbitrary distinctions. Having said that, and while the concept of continuing care is one that we can all embrace, its quality and delivery, as the noble Baroness, Lady Barker, so succinctly reminded us, often fall far short of the ideal. Can the Minister therefore say whether the Government will consider making the existing eligibility framework more responsive to the patients that my noble friend described?
I also welcome my noble friend Lord Harlech’s Amendment 279QE. Recognising the particular medical and dental fitness requirements of reservists is a sensible and clearly proportionate measure. The amendment does not displace the key principle, as he explained, that clinical need must remain paramount in this context. Can the Minister explain how the Government currently expect health bodies to recognise the particular circumstances of reservists and whether further guidance might be necessary?
This debate has been characterised by a consistent measure of concern around commissioning. We have seen this through Amendments 57, 59 and 73, as tabled by the noble Baronesses, Lady Grey-Thompson and Lady Pidgeon, who are seeking greater transparency through impact assessments and reporting requirements, particularly where specialised services are transferred to ICBs.
The noble Lord, Lord Hunt of Kings Heath, in Amendment 58, similarly highlights allergy provision. All this argues for Amendment 80, as tabled by the noble Baroness, Lady Grey-Thompson, which seeks greater scrutiny of the performance of ICBs.
As a significant number of the amendments in this group highlight, including those from the noble Baroness, Lady Scott of Needham Market, and the noble Lord, Lord Sharkey, there is concern that the Secretary of State, with so many priorities, will be unable to provide acceptable standards for certain groups. Accountability and consistency of standards cannot just be taken as a given or as things that will come out magically in the wash. It would be helpful if the Minister could explain to the Committee how the Government intend to reconcile these objectives.
In particular, where specialised commissioning is transferred to ICBs, who will be responsible for ensuring that the necessary commissioning capacity and expertise will be in place? Amendment 74, from the noble Lord, Lord Sharkey, and my noble friends Lady Sater and Lady Chisholm, asks a corresponding and equally important question around clinical leadership. As the noble Lord, Lord Scriven, expressed so well, the amendments in this group demonstrate the complexity of the decisions involved in commissioning healthcare, particularly for specialised services. I do think that further and better particulars are required from the Government before any of us can feel comfortable with the direction in which we are heading.
Baroness Merron (Lab)
My Lords, I am most grateful for this debate. I will endeavour to pick up most of the main points, but if I do not manage to do that, given the hour, I will of course be pleased to review the points raised and pick them up—in particular, looking at how I could be more helpful in providing some of the broader information that is being sought.
Perhaps I could start by emphasising that the whole point about the Bill is that Ministers are, of course, responsible to Parliament for how they discharge all their duties, including how they promote the comprehensive health service that we all seek and how we reduce health inequalities in access and outcomes.
The regulations prescribing the services retained for national commissioning will be subject to parliamentary approval. I assure your Lordships’ Committee that, in putting forward the regulations, Ministers have to have regard to patient numbers, provision costs and the number of providers, because they all relate to safety, effectiveness and value for money of commissioning at various different tiers.
Lord Lansley (Con)
My Lords, there have been so many good speeches that I have listened to, on so many important issues. I know we will return to them on Report, so, specifically with that in mind, I beg leave to withdraw Amendment 54.