Pathways Study: Puberty Suppression
Caroline Johnson Excerpts(2 weeks, 1 day ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
I declare an interest as an NHS consultant paediatrician and a member of the Royal College of Paediatrics and Child Health. What does this trial do? Put simply, it takes physically healthy children with normal pubertal development and subjects them to powerful drugs that may weaken their bones, affect their ability to think, damage sexual function and make them unable to have children of their own. Serious stuff—and for what? To treat a diagnosis of gender incongruence that will probably resolve without treatment.
Let us look at this carefully. Gender incongruence is a subjective condition; it is how someone says they feel. There are no lab markers and no scans. That, of course, is not necessarily unusual. In fact, it is common in mental health conditions. Gender incongruence is often self-resolving; it gets better on its own. Again, this is not unusual in paediatrics. It is really common for children to be admitted to hospital for supported care for things like gastroenteritis and respiratory viruses. Puberty blockers are powerful drugs. This is a powerful treatment with significant long-term consequences. Again, this is not new to paediatrics. Some chemotherapy, for example, has substantial short and long-term consequences. But what is unusual and, I think, toxic is the combination of all three. Medicine is about balancing risk. Where else would we give powerful drugs with potentially serious long-term consequences for a subjective condition that is likely to get better on its own?
I understand that this trial has been approved, but time and again we have seen and heard how fear and hostility can distort priorities. We have seen tragedy occur when fears of accusations of racism limited mental health treatment. We have seen profound suffering when fear of accusations of Islamophobia limited inquiries into the grooming gangs. The healthcare of children distressed about their gender is another topic where there have been attempts to shut down debate with threats and accusations of transphobia.
Such attempts were reported in relation to the Tavistock.
When considering treatments for life, with lifelong implications, we have a duty to be careful and sensible, so I ask the Secretary of State: why are this Government funding a trial that will cause harm to physically healthy children? These children may be 11 years old, at Tanner stage 2. Some of them are primary school children with only minimal signs of puberty. This is far too young. The MHRA warned in February that the youngest patients are at greatest risk; they may end up on puberty blockers for a much longer period, and face a higher risk to fertility, because sperm and eggs have not yet fully developed at Tanner stage 2.
I am reminded of this point in the judgment in Bell v. Tavistock:
“There is no age appropriate way to explain to many of these children what losing their fertility or full sexual function may mean to them in later years.”
Yet as the Secretary of State confirmed, the children must consent or assent to being in the trial. Why did the Government not heed the MHRA’s recommendation of a minimum age of 14 years? This Labour Government think that 14 is too young to watch social media. Why do they think 11 is old enough for this trial?
What is the goal of the treatment? In the trial, the outcome is a short to medium-term effect on quality of life and body satisfaction. Does the Secretary of State believe this is proportionate to the risks of these medications? Is there any evidence suggesting that puberty blockers are safer than they were thought to be in 2024, when the Government banned them, following the expert advice from the Commission on Human Medicines? Some have suggested that the drugs help adults to pass as the opposite sex. Is the long-term damage really worth it for the cosmetic benefit of a few? And it is just a few, because we know that the vast majority will be better without any treatment.
The Secretary of State said that “when it comes to eligibility, we are talking about a very small subset of a very small group.” Even if we were to accept the premise that a very small number might benefit from treatment, how could the clinicians identify which those children might be? A study of clinical outcomes from kids treated at the Tavistock is due to be completed next year. That could help, so why is the Secretary of State not waiting until that report is completed before conducting an experiment on an unnecessarily broad group of children? Has evidence come to light since the Cass review that helps clinicians confidently work out which 11-year-olds will become adults with gender dysphoria and which will not?
The Secretary of State has said that the criteria will stop short-term harm, and that should mean that long-term harm will not occur or go unnoticed, but history is littered with examples of things that do not cause short-term harm but do cause long-term damage. He also suggested that the trial will resolve the dispute, but sadly, I do not think that will be the case, because, first, a single trial rarely resolves a dispute; and, secondly, the comparison group, who are not getting the puberty blockers, are not randomised and are an intrinsically different population. This is bound to be highlighted once the result is published. In medicine, we have a founding principle: primum non nocere—first, do no harm. I ask the Health Secretary to please cancel this trial before vulnerable children suffer unnecessary, irreversible harm on his watch.
James Murray
I agree with the shadow Minister that most children and young people who are questioning their identity and gender are likely to resolve those questions on their own, and I think Dr Cass would agree with that. As I said in my opening remarks, for the majority of children who question their gender, we should let them be; they will resolve the matter through their friends and family and their own development. We are talking here about a small subset within a small group of children who need further support. I also agree with the shadow Minister that the situation before Dr Cass did her review—the situation that had developed in the last few years before the turn of the decade—was totally unacceptable, and we should be clear that that was wrong.
The shadow Minister asked about protecting the young people involved in the trial from harm. As I set out, there is intense scrutiny, and there are robust mechanisms to prevent the children involved from being harmed. She mentioned the MHRA recommendation for the lower age limit. Initially, there was no lower age limit, but a scientific dialogue between the MHRA and the trial sponsor led to publication last week of the updated protocol, which recommended the minimum ages of 11 and 12.
The gateways to younger people and children becoming involved in the trial are significant. There must be not just consent or assent from the children, and consent from their parents or guardians, but approval from the NHS care team, the national multidisciplinary team and others before anyone can be involved. As I set out, I feel uncomfortable and uneasy when considering this matter, but I think that the right way for us to move forward is to have the clinical evidence on which to base decisions. I have received reassurances about there being the highest possible level of scrutiny and protection from harm for young people involved in the trial, and that is the basis on which, on balance, I think it is right for it to proceed.
Health Bill (Third sitting)
Caroline Johnson ExcerptsThursday 18th June 2026
(2 weeks, 5 days ago)
Public Bill CommitteesRead Full debate Health Bill 2026-27 View all Health Bill 2026-27 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 18 June 2026 - (18 Jun 2026)
The Minister for Secondary Care (Karin Smyth)
Clause 1 formally abolishes NHS England as a statutory body, which is one of the key aims of the Bill. The current structure, with its two centres, has led to layers of unnecessary bureaucracy, duplication and unclear lines of accountability, and has come with significant cost, with the centre growing significantly in size since 2013. Through the Bill, we are simplifying the organisational landscape of the NHS and removing unnecessary complexity and overlapping roles among NHS England and the Department of Health and Social Care. The reform will enable leaders and staff to focus on delivering care, rather than on navigating bureaucratic hurdles. Importantly, it will also restore Ministers’ central role in national oversight and setting strategy, which the public rightly expect as part of a democratic system. The creation of an arm’s length body of this size was a mistake, and we seek to rectify it.
Clause 2 is integral to the orderly abolition of NHS England. It empowers the Secretary of State to establish transfer schemes, which will provide a structured and transparent means of moving property, rights and liabilities from NHS England to the Department of Health and Social Care, the integrated care boards and other relevant bodies. This robust legal mechanism is required to ensure a responsible transfer of NHS England’s assets and staff. It ensures that all necessary legal powers and permissions for the transfer are in place, preventing uncertainty or loose ends for staff, patients, service users and partner organisations as NHS England is abolished. The clause allows provisions to be made similar to those under TUPE to ensure the protection of employment rights for staff who are transferred from NHS England. In addition, the clause allows for the shared ownership or use of property, ensuring that assets can be distributed and used in a way that supports service continuity for patients and the broader health system.
Clause 3, at its core, provides a power for His Majesty’s Treasury to ensure through regulations that transfers from NHSE to the DHSC, ICBs and other bodies are delivered smoothly and on a tax-neutral basis. In particular, it allows HM Treasury to make adjustments to how existing tax legislation applies to transfers of NHS England’s property, staff and liabilities in a scheme made under clause 2. That will ensure that no tax charges arise, and that neither NHS England nor the transferee organisations end up with a different tax position due to the organisational changes. Importantly, the scope of the power is tightly constrained: it applies only to specified existing taxes and only for the purpose of ensuring tax neutrality in relation to transfers made under clause 2. Without the power, there would be a risk that transfers could trigger unintended tax liabilities that would divert public money away from frontline services and undermine the policy intent of the legislation. Clause 3 therefore protects value for money and ensures that organisational change does not come with avoidable fiscal costs.
Without the changes made by clauses 1 to 3 we will not be able to meet the ambitions set out in the 10-year health plan. The abolition of NHS England, delivered in an orderly, proportionate and considered way that safeguards the interests of staff and taxpayers, is a necessary precondition for an NHS that is more effective for patients, delivers better outcomes across the country and achieves the ambitions that the public expect of us. I therefore commend the clauses to the Committee.
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
It is a pleasure to serve under your chairmanship, Sir Jeremy. First, I declare a number of interests. I am a consultant paediatrician working in the NHS, a member of the British Medical Association and a member of the Royal College of Paediatrics and Child Health. Like the Minister for Secondary Care, I got into politics after working in the health service. I am sure she agrees that what you see when working in the health service stays with you when working in the House, and that it benefits the House to have people who have done all different jobs working here.
The NHS constitution says that health services should
“improve, prevent, diagnose and treat both physical and mental health problems with equal regard”,
yet in my work as a doctor—and I worked across several hospitals during my training—the gap between the vision of what should be delivered and the reality of what is being delivered has become apparent to me. The answer frequently given seems to be top-down reorganisation. As I will talk about in a minute, such top-down reorganisation has been done so many times but does not seem necessarily to have delivered in practice what it promised. Indeed, to an extent, we seem to be changing things from how they were to how they are to how they were, backwards and forwards. This Government have decided, in pursuit of better outcomes and cost savings, once again to reorganise the health service, and they seek to do so with this Bill and particularly clause 1.
Clause 1 formally abolishes NHS England. The clause may have very few words, but they represent one of the biggest changes to our health service in decades. Abolishing NHS England is not just a decision about organisational structure or trimming bureaucracy, but a break with the direction of travel the health service has been on since its inception.
Prior to the creation of the NHS in 1948, health services were fragmented: some people used contributory workplace schemes, people who could afford it paid out of pocket, and everyone else relied on very limited state and voluntary provision or went without. In the aftermath of the second world war, the national health service created a state monopoly provider. The Minister of Health had a duty to provide a comprehensive health service free for all at the point of use and a bureaucracy was created to manage it.
There was a tripartite split between hospital services, local authority services and independent practitioner services. The hospitals provided secondary care for those with serious disease and those requiring emergency response. The NHS also took over many cottage hospitals in rural areas that had previously been run by GPs, and larger hospitals that used to be run by local authorities and the voluntary sector. At that time, hospital staff were managed by hospital management committees appointed by regional hospital boards. Those boards implemented Government policies and oversaw the budget. Meanwhile, teaching hospitals kept more independence, directed by their own boards of governors.
Councils, operating as local health authorities, had a duty to provide several personal health services including health centres, maternity care, home nursing, immunisation and ambulance services—some of those are now provided by NHS England. They also had substantial powers to prevent illness and to care for the disabled. Independent practitioners—GPs, dentists, pharmacists and opticians— delivered services to local communities under contract from the health service. Now they deliver under contract from NHS England and the ICBs.
The health service underwent significant reorganisation in 1974, not long before I was born. The main objective at that time was to create a unified, integrated system. Community health services previously operated by councils moved into NHS control. These functions were put under the control of new area health authorities, which took control of most NHS hospitals. Some larger area health authorities had their own distinct management teams, which managed services on the ground—we can look at the current process and ask how it is similar and how it is different. The majority of teaching hospitals lost independent governance, in the way that we, too, are seeing that go back and forth. Above the new area health authorities sat regional health authorities, which were responsible for planning and allocating financial resources. Their members were appointed by the Secretary of State.
In the 1980s, Ministers recognised that the system had become very bureaucratic—perhaps similarly to today—and in 1982, area health authorities and district management committees were scrapped in favour of new district health authorities, with the aim of reducing what was in effect a three-layer structure to two layers. The thinking was that the new district health authorities would be closer to local populations, but primary care was left mostly unchanged. Once again, there are parallels with what is happening now.
From its inception to the end of the 1980s, the NHS had gone through several waves of rationalisation, but the model remained that of a centrally planned public service. However, during that time, there was an intellectual change—the concept of choice. Previously, people had been happy just to get a health service, which they had not had access to before, but that changed and people wanted choice. We now see the benefits of giving patients choice, and we will hear about how the Government’s changes through the Bill will apparently improve patient choice.
Of course, individuals have different values and preferences and live their lives in different ways, which makes it impossible for there to be a single public interest for the Government to pursue. Against that backdrop, the new public management approach to Government administration emerged, advocating for the introduction of market mechanisms and performance metrics—we have heard about the targets that NHS England follows—in public institutions. In theory, if elements of the state could operate more like the private sector, perhaps Ministers could achieve both cost savings and better outcomes.
In 1991 the Government introduced market logic into the health service. They created an internal market by splitting the purchasers—mainly, at that time, the district health authorities—from the providers, which were the hospitals. The Secretary of State gained the power to create NHS trusts—hospitals with the freedom to acquire, hold and dispose of assets; make bids for capital directly to the NHS management executive, in the way they might for NHS England; borrow money within limits; develop their own management structure; and employ their own staff with their own terms of employment. Within three years, almost all providers had become trusts. GP fundholding was established, enabling larger practices to receive budgets to buy secondary care on behalf of their patients, but that was short lived and was shelved in 1999.
When new Labour came to power in the late ’90s, one might have thought that things might swing back the other way, but in some respects the trajectory was similar. Initially, the Labour Government talked critically about the internal market. In 1998 the then Health Secretary told Members that the Government were
“sweeping away the internal market”—[Official Report, 1 July 1998; Vol. 315, c. 314.]
and the NHS plan published in 2000 claimed that
“the internal market introduced competition but failed to bring improvements.”
However, the policy choices of that Government furthered, rather than dismantled, the marketised aspects of the health service. They were saying one thing but, to some extent, doing another. There are similarities with this Bill: we have talked about decentralising power but, as we heard in evidence on Tuesday, many people feel it is more of a centralising Bill than a decentralising Bill.
It was clear that the new public management approach had been adopted across the political divide. The NHS plan promised patients more choice about how to access the NHS—a good thing. It promised a system of inspection, accountability and far greater local autonomy. It said:
“For the first time the NHS and the private sector will work more closely together not just to build new hospitals but to provide NHS patients with the operations they need.”
When GP fundholding went, the Government introduced primary care groups, which meant that GPs, nurses and other staff came together to commission for local populations. Those groups then evolved into primary care trusts, which by 2002 were responsible for spending 80% of the annual NHS budget—a budget that is now distributed by NHS England.
Dr Johnson
Thank you, Sir Jeremy. I will be grateful if the Minister clarifies at the end, because she seems to be suggesting that Lord Darzi’s report was wrong in some way. He was assessing the NHS at the same time that she was, with the experience of having been a Minister, and made the counter-suggestion.
It is not just about what one does; it is about how one goes about it. As we heard on Tuesday, there is in general a plan of what is going to happen, but so many decisions have not been made yet in relation to this. In particular, one of the witnesses from the union talked about how unsettling that was for staff and how difficult it is for staff to be asked to go from the current location to a destination unknown. It is very difficult to make transformation in a direction when it is not clear where one wants to be.
In March 2025, the Government announced that NHSE would be abolished. The largest healthcare union described the handling of the announcement as “shambolic”, coming only days after the announcement of a 50% cut to staffing levels at the centre. In the days and months since, Ministers have provided only some clarity about what they are trying to achieve. According to the Government, the restructure will cut red tape, save money, devolve power and improve accountability, all with a view to improving patient outcomes. Those are not new objectives; they are the same objectives that underpinned the creation of NHS England. How is it that the same objectives require dismantling the institution created to deliver them? Again, I just do not understand what has changed the Government’s mind.
Let us look at cutting red tape. As a Conservative, I welcome the ambition to make the health service more efficient. My constituents do not want to pay for staff in the Minister’s Department duplicating the work of those in NHS England, particularly when thousands every day are subjected to care that could certainly be improved. On Tuesday, we heard from the former Health Secretary, my right hon. Friend the Member for Godalming and Ash (Sir Jeremy Hunt), that
“the bureaucracy has got completely out of hand.”––[Official Report, Health Public Bill Committee, 16 June 2026; c. 33, Q58.]
However, that bureaucracy is not confined to NHS England and any medical practitioner will explain that bureaucracy exists across the entire health system. Can the Minister explain how the changes will improve that?
Lord Darzi’s independent investigation said that, taken together, there are nearly 80 people employed in regulatory and headquarters functions for each NHS provider trust. Can the Minister say how many people will be in such roles once the abolition of NHS England is complete? Can she talk about how abolishing NHS England will review the volume of paperwork on patient safety, some of which is helpful for patient safety and some of which is not. That was identified by Dr Dash in her report.
I remind Members that abolishing NHS England is not a prerequisite of undertaking a robust cost-benefit analysis before introducing changes. We have had difficulty in getting answers on numbers. We have been told that this will save money—£1 billion a year, I believe—but no sums have been produced for us to scrutinise to explain where that will come from. Indeed, when asking questions about where it might come from, it has been quite difficult to establish that. We have heard that the redundancy package will be worth £1.1 billion to £1.3 billion. It does not seem clear exactly where that will come from or how it will benefit patients. It is also not clear how many of those staff will end up re-employed by the new organisation, having received redundancy from the first, and what effect that will have on the country’s finances.
More than a year on from the Government’s announcement that they will abolish NHS England, how much progress have Ministers made? In March 2025, Lord Scriven tabled a question about the legislation required to abolish NHS England. In her response, the Health Minister in the other place, Baroness Merron, wrote:
“Ministers and senior Department officials will work with the new transformation team at the top of NHS England, led by Sir Jim Mackey, to determine the structure and requirements needed to support the creation of a new centre for health and care.”
One year later, in March 2026, the Liberal Democrat health spokeswoman, the hon. Member for North Shropshire, tabled a question asking what functions had been transferred over since the announcement was made. In response, the Minister for Secondary Care wrote:
“Work is progressing at pace to develop the design and operating model for the new integrated organisation, and to plan for the smooth transfer of people, functions, and responsibilities.”
One does not need to enlist the services of Hercule Poirot to see that, one year later, that work has not been done. The Government have no comprehensive plan for how they will abolish NHS England. They can write a line in the Bill to abolish it, but how that will happen, to which clauses 2 and 3 relate, is, as yet, really uncertain.
Dr Johnson
My hon. Friend talked about how the ICBs have merged. There are lots of different types of reorganisation going on at once: the abolition of NHS England, the changes to local authorities, the introduction of mayors in some areas, and the changes and cuts to ICBs. What effect is that having in his part of the country?
Joe Robertson
The shadow Minister points to a much wider issue entirely relevant to the Government’s plans here: the more reorganisation we do, the more we shrink the bandwidth to deal with smaller and more operational problems because so much of the resource has been pulled in. In my area, although it is probably true everywhere, reorganisation of Department or Government responsibilities causes endless frustration that while Governments and politicians—I take some responsibility for my own side’s actions at times in the past in very limited ways—talk about reorganisation when so much can be done on what might be termed low-hanging fruit.
I worry that the Government are missing out on opportunities here to make a much more meaningful difference day to day and much more quickly than this huge reorganisation will achieve. Everything is about priorities. Plainly, no Government can do everything they want to do all at one time. It slightly surprises me that reorganisation of the NHS and doing away with NHS England has become such a major priority, considering it did not feature in the Labour party manifesto just two years ago. I do not seek to put words in the Minister’s mouth, but the gist of her evidence to this Committee was that within eight months of this Labour Government coming into power, they realised that NHS England had to go. Eight months is eight months, but it seems a short timeframe in which to decide to do away with a fundamental way that health is organised and delivered in this country.
Going back to priorities, I recall that before the election, the former Secretary of State for Health and Social Care—then the shadow Secretary of State—the right hon. Member for Ilford North, talked about introducing a national care service. That was the Labour party’s big priority. Although Conservative Members and, frankly, the majority of the public were slightly sceptical of his intentions, we all agree that social care needs reform and that ultimately, the success of the NHS will be delivered only if we deal with the long-standing crisis in social care, which extends back three decades or more, as it is entirely dependent on that.
Before the election, the priority was the national care service, but since the not-so-random date of 5 July 2024, when the right hon. Gentleman became the Secretary of State, he ceased to refer to reform of social care, and it seems once again to have been put on the back burner. I wonder whether the Government’s plan to abolish NHS England has gotten in the way of equally large, and perhaps even more substantial, reforms, which might ultimately have made a much more meaningful difference to the delivery of not only healthcare but health and social care, as well as to the overall wellbeing, including financial wellbeing, of so many people in this country. Social care refers to people living with frailty or dementia, and the family carers, and families more widely, on whom that has an impact. Every decision made is a decision not made, given the resource and bandwidth of those whom any Government ask to implement change, such as the civil service, advisers and the hundreds or thousands of people who are relied on to deliver in their day-to-day job.
I and, it seems, all the other Committee members do not disagree with the fundamentals of what Government are trying to do; their reasons for doing this are broadly sensible, so who could disagree? However, because of the manner in which it is being done, I urge caution and a check on being too optimistic—just doing it and expecting all the good things to flow. It will take an awful lot more than simply passing the Bill to make the NHS the success that, to take the Minister at her word, she intends, wants and will do her best to achieve.
Ordered, That the debate be now adjourned.—(Emma Foody.)
Health Bill (Second sitting)
Caroline Johnson ExcerptsTuesday 16th June 2026
(3 weeks ago)
Public Bill CommitteesRead Full debate Health Bill 2026-27 View all Health Bill 2026-27 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 16 June 2026 - (16 Jun 2026)
The Chair
We will first hear oral evidence from the NHS Alliance and the Royal Berkshire NHS foundation trust. We have until 2.30 pm for this panel. Gentlemen, I will be grateful if you would be kind enough, from left to right, to introduce yourselves for the sake of the record.
Sir Ciarán Devane: I am Ciarán Devane, chief executive of the NHS Alliance.
James Blythe: I am James Blythe, chief executive of the Royal Berkshire NHS foundation trust.
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
Q
Sir Ciarán Devane: First of all, the ICBs have had their 50% cuts and they are in the middle of reorienting themselves and joining up, so there has been a degree of distraction. The second thing, though, is the idea that the ICBs should be strategic commissioners, working well to commission plans that genuinely reform services. I think we all support that, and the move to give them GP commissioning, pharmacy provision and so on. All of that is good.
The challenge will be that the baseline for the current year is not necessarily the outturn of last year, because there were some one-off savings in that, so our members across the NHS are saying that this is the year when the trade-offs have to be made. Some of those trade-offs will be good, in the sense of we can reconfigure this service, move some services into the community and do some good things—I am sure we will hear about some of those—but some of them will require difficult decisions to do with whether we shut down the service in this hospital and double down on the one over there. Making those decisions will need political cover locally as well as nationally, so we are in a tricky place.
What we are saying is that we all understand the state of the public finances and suchlike, but we need some capital to allow places to reconfigure and redesign their services, whether that is new IT, AI or diagnostic services. Those are the things that will allow the transformations to take place, which is where the productivity and the money will come from. What we and chief executives, finance directors and chairs across the NHS are saying is that there is only so much heavy lifting that asking people to run around the hamster wheel a bit quicker can do. We have to make some of those big decisions.
Dr Johnson
Q
Sir Ciarán Devane: We are unclear and concerned about what the nature of those interventions could be. In theory, we fully understand that the Secretary of State and the Government need the ability to say, “In the unlikely event an ICB goes rogue, we have to have the right to sort it out,” but we need to guard against the alternative of a Secretary of State who is intervening too much and making decisions on particular services, commissioning decisions or reconfigurations. We want the legislation to prescribe the circumstances in which the board of an ICB can be overruled. That should be transparent, it should be published, and intervention should be rare. We recognise that that backstop needs to be there for the sake of good governance, but we need checks and balances. The powers are needed if somebody is operating outside their licence, but we need to guard against the Secretary of State or the regions or the new departments reaching in and second-guessing local decision making. If this is really about empowering strategic commissioners to do what is right for their populations, working closely with local authorities, interventions that second guess their decisions need to be very rare.
Dr Johnson
Q
James Blythe: Councils of governors across the NHS have added significant value since they were instituted and brought into foundation trusts. The foundation trust councils of governors play two roles. The first relates to the appointment and holding to account of the non-executive directors on the board. The second relates to securing public and patient involvement and voice in the organisation and the management of our services.
Since councils of governors were instituted, we have developed increasingly sophisticated ways of getting public and patient voice into services. If you look at innovations such as maternity and neonatal voices partnerships, which really involve service users in how services are developed on the ground and are very close to the teams that are running them, that gives us different ways of involving patients and the public in services where possibly councils of governors have not been able to do in the past. Councils of governors have played a really important role in foundation trusts, but certainly in terms of that patient and public voice function, we have moved on as a system and developed more sophisticated ways of doing that.
The Minister for Secondary Care (Karin Smyth)
Q
Sir Ciarán Devane: The biggest difference should be that the local providers and ICBs are incentivised to get together to make collective commissioning decisions. That means that, whether you call it a neighbourhood, footprint or local authority area, they make those decisions based on population evidence, which is why the single patient record is important, and they have the autonomy to do that with a lighter-touch centre that is set in guidance saying, “Look, this is broadly what we’d like you to do.” That guidance should be developed in conjunction with the people who have to do the job on the ground. That is what it should be; if the Bill allows that, that is fantastic.
The second bit is that the mechanism—it is not necessarily a legislative thing—by which the NHS is managed day-to-day will still need to exist. Who is going to be keeping an eye on things 24/7, 365 days a year? What happens if there is a fire—maybe even a literal fire—in a hospital? How is the NHS going to be corralled and brought in to help out a trust where something like that happens? That management function—the day-to-day operational management—needs to remain strong enough in the target operating model, as it is called, in the Department. If it is not, that could prove very difficult. Not necessarily day to day or in the short term, but in the long term, that bit has to be got right. One of the big risks of the legislation—there is not a legislative solution to this risk—is how day-to-day management works. We all have views on the relative strengths of the regions, of NHS England and so on, but how is that going to work in the new world? If one loses “grip”—that word is used a lot—then the risk to service delivery is quite high, and the risk to financial control is even higher.
James Blythe: Put simply, as an NHS organisational leader I think there are always a lot of things from which you can take your guidance on what you should be prioritising and focusing on as an organisation. If the result of this legislation is that we as organisational leaders have a really tightly defined set of priorities to deliver, articulated as far as possible as outcomes for local people and our population as a whole in terms of waiting times, quality and improving population health, I think that will allow us locally to get on with the partnerships that we already have as a day-to-day part of running local public services. We can focus on that very small set of things and do them really well.
Over the last year, there has been a sense of increasing clarity about those priorities as NHS England and the Department of Health and Social Care have worked more closely together. The NHS has delivered on those priorities to a large degree, but it all comes down, as my colleague says, to how senior officials and Ministers operate the system, because there is to be significantly more freedom to set priorities, and to design and run the system that essentially delivers them for the NHS. How that is done, retaining clarity about the things that we want to have delivered through the system and empowering local systems to do them will be really important.
The Chair
We will now hear oral evidence from the Patients Association, Together for Short Lives and Healthwatch England. We have until only 3.10 pm for this panel of three people. Would you be kind enough to introduce yourselves for the record? Let us start from the left.
James Cooper: Hello. I am James Cooper, associate director of external affairs and membership at Together for Short Lives.
Sarah Tilsed: Hello. I am Sarah Tilsed, head of partnerships and involvement at the Patients Association.
Professor Croisdale-Appleby: Good afternoon. I am David Croisdale-Appleby, chair of Healthwatch England.
Dr Johnson
Q
James Cooper: I think that there are both opportunities and threats for families of seriously ill children and the professionals and services that provide them with palliative and end-of-life care. When we talk about seriously ill children, we mean children with life-threatening conditions, life-shortening conditions and severe medical complexity. They have a range of emotional, psychological, social and physical needs that need to be met across health, education and social care services.
Part of that care involves specialist children’s palliative care, which is predominantly provided at a regional level by teams led by specialist paediatric palliative care consultants. They often have Grid training, and there are not many across the UK—there are only about 24 whole-time equivalents. They are often based at children’s hospitals or children’s hospices and are often co-located across both. These specialist teams also comprise senior nurses and other specialists involved in emotional, psychological and practical support for families.
Our issue is that these services are often quite patchily commissioned at the moment; even though there has been a specialised children’s palliative care specification from NHS England since 2012, we think that money and commissioning has flowed to these services to only a very limited extent. For example, we have a successful service in the east of England, which provides 24/7 end-of-life care at home for seriously ill children, supported by nurses and these specialist consultants. But the provision is really patchy across England.
The Bill presents some opportunities through the additional powers for the offices for pan-integrated care board commissioning—the OPICs—to mandate ICBs to work together to commission these services. We would like to see that. However, because of the small numbers but highly complex needs of these children, the services often need to be planned and funded at a regional level, although they often are not.
We are concerned by the increased devolution to ICBs because of the extent to which other children’s palliative care services—the core services—are being commissioned at the moment. We have a range of evidence that shows that it is possible in some areas for that care to be commissioned well—for example, 19% of ICBs currently commission end-of-life care for children at home 24/7, provided by nurses and specialist consultants. However, at the moment ICBs are not taking on their full functions and implementing national guidance.
I would like to see much more rigour and accountability from the centre, the Government, to make sure that such specialised commissioning works for this particular group of complex children and families.
Dr Johnson
Q
Professor Croisdale-Appleby: Obviously, I am not here to speak on behalf of the CQC, although I am a non-executive director of the CQC. You are quite right that it has been in a challenging position, from which it is taking very substantial steps to recover, principally in changing back to a system of having chief inspectors who are very knowledgeable about their particular area of expertise that they can apply. The Department has asked the CQC to take on additional responsibilities in its regulatory capability and, to some degree, in an inspectorate capability. I cannot really agree that it is too much for the CQC to take on, but a substantial amount of work is certainly being added to the CQC.
Dr Johnson
Q
Professor Croisdale-Appleby: It is quite interesting to think that we have had 52 years of independent organisations representing the patient voice, as well as that of the carer. I think everyone here will be aware of it, but there was a step change in impact after the Mid Staffs situation, when Healthwatch—both Healthwatch England and the 153 local healthwatch bodies—was set up. We have produced over 20,000 reports; if anyone is interested in accessing any of them, we can certainly provide access by the end of the week.
Since I joined Healthwatch in 2023, in my view it has been very successful in reaching out to those communities often referred to as “difficult to reach”—diasporas and so on, where we all know the health inequalities are often the deepest. I think Healthwatch has been very successful in ensuring that we have not just listened to the easy-to-reach groups but deliberately sought information and views from those other parts of our society, which form an increasing part of it.
The research being done with those communities has recognised that there is quite often an investment of some six months for one of our people go into a particular community—whether a cultural community or an ethnic community—and win the confidence of the people so that they actually talk to us about the problems. I have to ask how that depth and focus is to be replicated under the arrangements suggested in the Bill. That is my extended first point about Healthwatch.
I think we have had a lot of impact, and I use the word “impact” as a researcher myself. Impact is measured by the change that you make. When we produce reports, whether national or local, we include recommendations. The important thing is that we always follow up on those recommendations and ask, “Are they being implemented? Are they being listened to?” Each year, we produce a report that says, “What change has occurred as a result of the recommendations that we make?”
I think that is extremely valuable, because it is about independence and holding organisations to account. Clearly, those organisations report in line function to the Department of Health, NHSE or local authorities, but we are not only the ears of the patient and the carer; at times, we hold feet to the flames over whether something sensible is being done. We do not give up on this; we pursue it down the rabbit hole.
The Chair
Q
Sarah Tilsed: Professor Croisdale-Appleby said absolutely everything that I was about to say, so I will make just a few points without going back over everything.
The main thing is that we need to make sure that this does not divert attention from the main priorities, which obviously relate to patients: timely access to care, clear communication and involvement in decisions about their treatment. As the professor said, we need a truly independent patient voice. Abolishing healthwatches creates a fragmentation of patient engagement responsibilities across ICBs and local authorities. The evidence we see every day consistently shows that patients are not feeling informed, involved or treated as equal partners in care.
We need to ensure that any replacement model is, as Professor Croisdale-Appleby said, genuinely independent, transparently accountable and resourced equally across the country, to ensure that we do not lose sight of the people it is supposed to serve. Trust is really important here, and patients trust independent organisations. I feel that that trust might be lost in local communities.
Lastly, this is, as Professor Croisdale-Appleby said, about reporting. We need to consider the way that patient feedback data is reported, and ensure that that is not getting lost. Themes and demographics still need to be included to make sure that we know who we are listening to, and that services are provided for those who feed back and those who do not—usually, it is those who are not feeding back who we really need to consider.
The Chair
Good afternoon. We shall now hear oral evidence from the Local Government Association, the Association of Directors of Adult Social Services, and South East London ICS. We have until 3.50 pm for this panel. Could you identify yourselves for the benefit of the record, please?
Maria Higson: My name is Maria Higson. I would like to state for the record that I am here to bring to the panel the experience of a director of transformation within the South East London ICS. I do not represent the organisation, but hopefully I bring that experience.
Councillor Wright: I am Councillor Megan Wright. I am the vice-chair of the Local Government Association health and wellbeing committee.
Sally Burlington: I am Sally Burlington. I am chief executive of the Association of Directors of Adult Social Services, which represents directors of adult social care in England.
Dr Johnson
Q
Councillor Wright: I assume that was directed at me, as I am a representative in local government. We feel it is going to weaken it. Having someone on the ICB is useful to help shape health strategy and ensure that the wider determinants of health are taken into consideration when planning health. We would like to see some kind of structure where local authorities and other partners involved in determining health from a wider perspective have a voice within the NHS delivering health locally.
Dr Johnson
Q
Maria Higson: Whenever we introduce these changes into the system we have to remember that we are talking about a group of professionals who are trying to deliver for the NHS, citizens and patients. This Bill was first announced back in March 2025. It would be fair to say that since then, for an awful lot of people, there have been organisational and personal unknowns. The best intentions to deliver against the agenda and the three shifts can be hindered by that uncertainty. As with everything, implementation is absolutely critical.
Dr Johnson
Q
Sally Burlington: The better care fund is a really important source of funding for statutory core services. It funds about 80% of social care—in terms of the use of the better care fund by social care, 80% is statutory. While the ability to use it differently could be really valuable, we would be worried about diverting it from those core services into other functions. We have also benefited from the fact that the better care fund is uplifted at the same rate as NHS funding. If we lost that, it would be significant, because social care is systematically less well funded over time compared with some other services.
Karin Smyth
Q
Councillor Wright: The main problem the abolition of NHS England has caused is upheaval and uncertainty with our health partners. Many of the health partners at our health and wellbeing board meetings or our place committee meetings are almost saying to us, “I don’t know if I will be here at the next meeting.” Such turmoil in the changeover creates instability from a lack of being able to plan what will happen next. That is one of the challenges that we feel. We are working with our health partners and getting assurances that there will be continuity, but it is quite hard when the person we are working with is changing.
We are really excited about neighbourhood health sitting under health and wellbeing boards. We love the idea of neighbourhood health looking at the wider determinants of health and having a very localised health response to the issues that that community needs to help it. One of our anxieties is that a lot of ICBs have become bigger and have less connection with the place. They are also shrinking; I think NHS England is losing 30%—
Maria Higson: Larger geography, fewer people!
Councillor Wright: Exactly. We have had a letter from our ICB giving us the heads-up that they might not be able to guarantee that they can send the right person to our health and wellbeing committees, which will obviously make it difficult to plan neighbourhood health.
The other challenge we find in neighbourhood health is that local authority boundaries might not necessarily match neighbourhood boundaries. I will give an example from Bracknell, where I live. Bracknell is very clearly a neighbourhood, but the south of the borough, which is within the Bracknell Forest council area, probably sits within Bracknell and Wokingham and a little bit within Reading. It will be hard to bring in true neighbourhoods with the current structure, but that is something we are working around, and we are hopeful that we will be able to sort it out.
Dr Johnson
Q
Paul Farmer: From the perspective of older people and people with long-term conditions, the single patient record will be, broadly speaking, welcomed. I will explain very briefly why. If you are an older person with multiple long-term conditions and you find yourself in hospital, you often have to explain your experience and health needs, time and again. That is often because of a lack of join-up between the current data systems. Single patient record means the individual patient does not need to repeat their stories or lived experience—and, more importantly, it allows clinicians to have a clear overview of an individual patient’s health records. There are issues that need to be considered, particularly around making sure that people are not digitally excluded, and I am sure that we will get into those, but at a high level we would welcome the introduction of a single patient record.
Kath Abrahams: There are some very similar themes for us. A lack of shared patient record is a particular issue in pregnancy and maternity. You are being seen by your GP, early pregnancy unit and maternity unit. You might have other conditions that affect pregnancy or could affect the outcome of your baby being born. At the moment those systems are very disjointed. The other piece in maternity, which will not come as a surprise to you, is that, if you have lost a baby, you end up having to retell your story over and over again and that can be very traumatic. Sometimes that can lead to people disengaging from care, but also in many cases being retraumatised.
We broadly welcome the single patient record, but with lots of caveats around people feeling able to trust the data and trust that their data is safe. Overall we are very supportive.
Emily Holzhausen: Again, similarly to my colleagues, we are supportive. When we ask unpaid carers what matters to them, sharing of information is really critical, but we have a slightly different perspective here.
First, carers would like to have access to the record, with the right permissions. That is not on the face of the Bill, but it is suggested that that may be covered in regulations, and we would like to see some assurances of that. It would change things, again, because of not having to retell information, which carers call “triggering” and “exhausting”. They will be more able to spot errors or things that are not quite right, which is important for the person they are caring for. As an unpaid carer, when you are responsible for caring for someone, that is a huge weight on your shoulders and you really want to make sure that it is being done right. Finally, most of us care remotely—we do not all live with the person that we care for. This could really help to transform carer’s lives and the pressure they feel.
I have one statistic for you: just under one in eight carers spend over 40 hours a month on NHS admin. If the NHS app and the single patient record can reduce that, that would change things. The only other point I would like to make is that where this tips over into social care, this is something that we need to build with social care and all those people who go across all these different services.
Dr Johnson
Q
Emily Holzhausen: Yes. That is a lot of different questions. It has to be done with the right permissions, with the patient being in control of their data—that is a very strongly held principle within the NHS. There will be situations where people do not have capacity and their primary carer, who might be their partner, their son or daughter, might need access. We have lasting power of attorney in England, which could be used as a mechanism, or other assurance mechanisms.
As for digital access, that is an issue that I am sure Paul will want to come on to. Especially when digital access costs money and we have people in poverty, we have called for that to be supported by Government to ensure that everybody has digital access. People have to feel confident about it. While we have seen a doubling in the number of carers using the NHS app to manage their own health and care in the past two years, there are key groups that are being excluded: older carers, people on lower incomes and people who feel less confident with technology, for a whole range of different reasons.
Some of this stuff is delivered very well through voluntary and community services—I know that Age UK has helped my family locally, for example, but I will stop there, because I am sure Paul will want to come in on that.
The Chair
Paul Farmer, you have been given the floor.
Paul Farmer: I would very much like to come in on this subject. We see probably the greatest risk and the greatest opportunity here, in the context of digital exclusion and digital inclusion. The risk of digital exclusion is that older people in particular, although it is not exclusively an older people’s issue, will lack the access to their own care record, as it is electronically based. We need to bear that in mind when we think about the roll-out of that and the availability of the content of that patient record to people who are digitally excluded.
I do think, however, that this is a significant opportunity. It is part of a much broader question about digital inclusion more generally, and inclusion into accessing public services more generally, which is a key theme of the work we are doing at Age UK. We had funds from DSIT to support the work of our local Age UKs, where we run a number of digital champions programmes—Members are very welcome to come and visit them at any time. We worked with 8,000 older people in a two-month period; we engaged more than 1,000 of that group into our digital champions programme, and two thirds of people took up the offer of engaging in a training module on accessing the NHS app.
In particular, we were able to enable people who are partially digitally excluded. We are publishing a report later, which we will share with the Committee in time, about the opportunities for people who are not fully excluded, but partially excluded. We think people are able to go on that journey, but it does need support. We encourage the Government to think about putting a really thorough programme of digital inclusion alongside the implementation of the single patient record, to support older people, people with long-term conditions, people with learning disabilities and other conditions who might need extra help and support to access the NHS app. There is a risk here of people being excluded, but also an opportunity for inclusion.
Mrs B, in Lincolnshire, was helped by Age UK Lincolnshire. She was a carer to her husband, who has had a stroke; she had a home visit from the local Age UK and they were able to set up the NHS app for her. She said she would not have been able to do that without that extra help and support.
Dr Johnson
Q
Kath Abrahams: On digital exclusion, the same risks apply, although there is a different age demographic. If you have somebody who has a particular disability, has English as a second language, or has difficulty reading, we need to ensure that alongside the single patient record we are not excluding people without meaning to. Having said that, there are real opportunities to reduce inequities as a result of this change, such as by ensuring that everyone’s information is there, and that people do not have to retell their story if they find it difficult to speak to their clinician.
What the single patient record will not do is solve all the problems found in the national maternity and neonatal investigation. An action plan will come out of that investigation, and it must be looked at really seriously. A single patient record does not replace compassionate care or somebody really being looked after well, but it can potentially provide a safer environment—I am very happy to go into detail on that.
The national maternity ambitions have expired, but we are pushing very hard for them to be restated. There is potentially an opportunity to use the data at a broader level to measure progress. If it was possible to use the single patient record to understand how things were going towards improvement, that could be very helpful.
Karin Smyth
Q
Kath Abrahams: Right now, the situation is really tricky and people are being failed in their pregnancy and maternity care. Women report constantly having to retell their story—highly sensitive or traumatic experiences of loss—and that repetition can happen across the early pregnancy unit and maternity services. There is a common misconception that the NHS is one system, so when they find that people in another bit of the system do not know something, that can be really frustrating and annoying, because they assume that it exists.
There is also a lack of continuity. A clinician can be completely unaware of a sensitive or traumatic experience that somebody has had, and there can also be genuine dangers in outcomes. We know from the reports into Morecambe Bay, Shrewsbury and Telford that the lack of joined-up sharing of information and good communication between different parts of the system has led to some really difficult outcomes, particularly if somebody also has gestational diabetes, for example, or another condition and they are taking a particular medication that could cause harm to an unborn baby.
There are lots of situations in which not having the complete history is preventing people from getting not only really good, compassionate care, but the safe care they need. If someone is in an emergency situation and they are bleeding out, or their baby is not moving as much as they should, there is not time to start from scratch; they might not be in a position to explain what is happening to them and what their history is. They might not even know all the relevant bits of their history. Having that complete record, if it was done really well, would give clinicians the information that would allow them to make really timely decisions. Maternity can often be high risk—I do not need to say that to you; you know that—but these are often fast-moving situations where time is absolutely of the essence.
Emily Holzhausen: To build on what I said earlier about the amount of co-ordination and admin that people do, I will just refer to some carers’ words. One said that if they had to phone, they would end up in a long waiting queue or having to travel to the GP in person. There are people juggling work and care, so this has real, everyday impacts on their lives and their time.
When I refer to errors, I mean things such as medication errors or diagnosis errors. When you care for someone with very complex conditions, you can have health appointments every week—sometimes twice a week—and it is so hard to stay on top of it. When I say it is so hard, and talk about unpaid carers, we know that caring is a social determinant of health: in itself it is a single factor for poorer health outcomes. We know that 600 people a day give up work to care.
We have done a report on the tipping point: what tips carers out of work? One such thing is social care; another is how they are treated in the health system. If we reduce the pressure on carers and put information at their fingertips to help them to manage care, we improve outcomes for everybody: the health and wellbeing of the carer and the safety of the person that they care for. People are trying to do their best in quite a difficult situation.
One of our members, Norman Phillips, has talked about that a lot. He was in contact with more than 24 professionals, knitting up care around his wife who had advanced multiple sclerosis and dementia. That is an incredible amount of co-ordination of care. You can see how a single patient record, as it is envisaged in the future, could really help to support people who provide care. It is critical, given that we have an ageing population, that we recognise and support families in what they do.
Paul Farmer: I would start by talking about people with long-term conditions. Let us bear in mind that by the time we are 65, 82% of us will have one long-term condition, and half of people aged 70-plus have more than one long-term condition. Most of those long-term conditions are diagnosed within primary care, but of course they have a huge impact on access to secondary care services. For a clinician not to be able to see that whole picture and for the individual to have to explain again and again their physical health issues, and potentially their comorbid mental health issues, creates a huge challenge for people in getting access to the right help and support in a timely manner.
I would build on that to think about two areas that particularly affect older people: frailty and dementia. In this context, we know that assessment for frailty can make a big difference to ensuring people receive the right kind of help and support. That should be done in primary care, but often, sadly, people with frailty will present in hospital with a range of conditions. Understanding the frailty assessment score and what help and support is needed is key. For people with dementia and their family carers, having access to the right information for the clinician and for the individual concerned can make a huge difference. A disjointed experience just exacerbates what can often be a very challenging time.
Dr Johnson
Q
“rather than data being transferred from where it exists at the moment to a new system, it will remain where it is—in GP surgeries, hospitals and so on—but it will be linked up so that one person, including the patient, can see all that data”.—[Official Report, 1 June 2026; Vol. 786, c. 890.]
How easily will that work in practice? In the trust that I work in, we have different systems for blood results, results, tracking patient appointments, maternity and A&E. Is it realistic to expect someone to be able to log on from one part of the country and to understand all the different systems in all the other parts of the country, or do you think that it needs to work in a different way?
Dr Imam: About a month ago, we published some NHS England guidance on best practice for frailty. Included in that are examples of shared care records, where people who are living with frailty who have been assessed by health services can actually view one record. The way those work is to take information from multiple different records and place it into one shared care record, in order for clinicians from various different backgrounds and multidisciplinary teams to work together.
Dr Johnson
That would be moving it on to a new system.
Dr Imam: That is in a separate shared care records system.
Dr Byrne: As I understand it, the architecture is not yet decided, so how we solve those technical challenges will be determined by the choice of architecture.
Dr Cocker: Similarly, I believe that the technical solution for how that will be delivered has not been finalised. When we did the maternity-based pilot in the north-west, the wireframe prototype that was developed pulled information from all the separate systems—the maternity system, the hospital central electronic patient record system, the GP system. The pilot was based on pulling it from each individual system into one place where it can be viewed, but that is a future aim. The focus is on phased implementation, so it would not all be immediately available like that, but that is the vision.
Dr Johnson
Q
Dr Cocker: That is a pertinent question. I know that that has been the focus of a lot of concern since the Bill was publicised. I believe that the structure of the SPR would be recognised as a critical national infrastructure-type of project, so it would have access to more resource to protect it. But there will always be inherent risk, when you have something centralised, that it is a single target rather than multiple targets that could be attacked—for example, in a cyber-attack.
Role-based access would be important—for example, having an understanding that the information should be accessed only for the provision of clinical care. How it would be delivered on a technical level would have to be finalised; that was not the type of the prototyping work we did, because it was more about a proof of concept than those more minute technical challenges.
Dr Byrne: I am glad that Dr Cocker took that question first, because he has given you a helpful technical answer. As National Data Guardian, my mission and concern is primarily around public and professional trust. Trust in whether this system can be relied on in terms of people’s confidentiality is something that concerns me very much, as well as people’s trust and confidence in secondary purposes, how the system will be used and what the safeguards around it will be. I would be happy to answer from that perspective when it comes to people’s confidence.
I think you have heard a lot about the potential benefits of this system, but it is important to bear in mind that if people do not trust it, the programme will fail, however great the potential benefits are. As a clinician, I would share the excitement, and I am very supportive of the ambition, but people will not trust it if they perceive the risks to the security of their data and confidentiality to be too great.
With that in mind, I want to draw attention to two things that concern trust. I want to emphasise that trust is not simply important—I know that the word “trust” has come up repeatedly today—but absolutely foundational to the success of this. The question about how demonstrably trustworthy the system is should be the primary foundational question; all other questions, including the technical ones, flow from that one question.
On the confidentiality aspect, I think there is a provision under clause 47 that potentially has very significant unintended consequences. I understand that that is not the intention of the drafting, but I have concerns about it and I have a potential solution to suggest. In clause 47, proposed new section 250E(3) creates the power for the Secretary of State to remove the duty of confidentiality for any processing in the SPR in line with regulations. I need to register my concern about that wholesale lifting of the duty of confidentiality from the entire system.
At a system level, there are two risks. One is to patient and professional confidence in the confidentiality of the data once it is accessed or in a system. Confidentiality is absolutely the cornerstone of all clinician-patient relationships. It means that people are comfortable to share the most sensitive information about themselves and often loved ones—it is not just information about ourselves on our records; it is often also information about our loved ones. If people do not trust that that confidentiality is a constant ethical constraint for anyone accessing the record further on, they may be less able to share information about themselves or their loved ones. Clinicians may also be less likely to document that information if they have ethical concerns about who may access it further on if it is particularly sensitive. That will negatively impact on care and the quality of data for any secondary purposes in future.
The second point I will make about that confidentiality provision is that I understand that the drafting intent is to remove any ambiguity in terms of people’s concerns about duty of confidence when allowing access to their data at an organisational level. However, as currently drafted, the provision could be interpreted to remove the duty of confidentiality for not just direct care but secondary purposes. Secondary purposes in future could be dealt with by regulations. That lack of clarity poses a risk.
The solution I suggest is to redraft that provision, drawing on the precedent already set in the Health and Social Care Act 2012. Section 259 prevents disclosure of data from an organisation from being a breach, so people could allow access at an organisational level with confidence. You have removed that ambiguity, but it does not remove wholesale that duty of confidence—that ethical safeguard for the data in the system itself. I think that that is important for people’s own direct care, and, as I said, it is particularly important if there are any questions around secondary uses in future.
Dr Imam: That was a comprehensive answer; I have nothing to add.
Dr Johnson
Q
We keep hearing that it is difficult for people to have to repeat their story. I understand that stories can be traumatic and repeating them can be unpleasant, particularly if it must be done many times, but is there sometimes a clinical value in asking people to go through their story? If so, what is it?
Dr Imam: My specialty is frailty, which is a medical condition characterised by a loss of independence. Although it is associated with ageing, it is not an inevitable part of ageing. The treatment that I deliver as a clinician is called a comprehensive geriatric assessment. It is evidence-based and we know that it improves patient outcomes and maintains independence. What it describes is a multidisciplinary team approach to a holistic assessment that focuses on what matters most to the patient.
One of the issues that we have right now, however, is that the NHS does not consistently identify people who are living with frailty right across the system from community to hospital. If we are identifying people and diagnosing them with a condition, you would expect treatment options to be offered, yet we do not consistently do that across the country. That is essentially driving ineffective and inefficient care. Sometimes, therefore, when a crisis sets in—we have seen this in other reports around corridor care—that can ensue in older people living with frailty.
In my day job, where I look after people in a busy A&E department, I see people who have may have had a fall or become confused, or where there has been a breakdown in their social situation. My practitioners and I are spending hours trying to piece together information from multiple different sources. Those could be paper-based, digital or telephone—we could be trying to phone people to get up-to-date information. As you can imagine, sometimes they do not pick up the phone, so we are sometimes working from incomplete information and things that are not up to date.
Once we have done that, we try to create a care plan for a patient that allows them to be looked after in the community. However, that care plan may not follow the patient, because everyone uses different electronic patient record systems. Some important partners in that care, like social care or ambulance services, cannot actually see the care plan that I have developed for my patient.
Unfortunately, if a patient with frailty then succumbs to a crisis of some kind, the default setting is, in many cases, to trigger an admission to hospital. If a patient does not need to be in a hospital environment and they are frail, they can end up becoming more frail and weak, and lose their independence. That means that they will need even more social care than would otherwise have been required.
Where the solution comes in is that a nationally rolled-out single patient record system could fundamentally reshape this form of care, because we would be moving it from the fragmented, reactive model that I just described to one that is proactive, co-ordinated and truly centred around a patient. Another thing about frailty is that there are so many different people involved in that person’s care, so we need to try to restore the continuity of care for that type of patient, which has become eroded over time. The SPR addresses that with a single up-to-date view of a patient. It enables earlier risk identification, faster clinical decision making and that whole-system integrated response I have been describing, which is lacking at the moment.
There is often duplication; one of the other issues is that assessing patients in this manner can take a long period of time—up to two and a half hours is often quoted by the British Geriatrics Society. You can imagine that if you had an electronic record that could be auto-populated or could rely on the most recent, up-to-date plan done by someone else, that would avoid reassessment as we would be working from contemporaneous information.
Over time, you can see how, for frailty and many other conditions, that could lead to a more preventive approach that is more community based, that reduces the need for admissions, and that provides a better overall experience for staff and patients. Importantly, there needs to be a shift towards neighbourhood working on frailty, and this allows the multidisciplinary team to work towards one plan. You have also heard today about patient voice and carer voice, and this type of care plan also gives them the opportunity to become partners in looking after themselves.
Dr Cocker: The brief answer to the original question would be that communicating and getting a history from a patient are the cornerstone of the patient-doctor relationship. I do not think that the SPR is ever intended to replace that. Where I see its value within maternity, although I am sure that this is the same across all specialties, is that it would form a reliable means of cross-referencing information and being able to get information that—as we have alluded to previously—is often held on many separate systems. As a clinician, you will often not have the ability or the credentials to access that.
For example, in maternity care at my trust we use a certain piece of software. If you do not work in maternity, although you might be able to get generic access to it, you might not be able to navigate that system. The idea of the SPR is that it would pull out those key bits regarding current concerns about the pregnancy or what follow up has been arranged—all those kinds of things. That would not rely on the ability to use lots of different systems; instead, the information would be available. If there is information that requires cross-referencing or checking, it would also give you the ability to do that rather than replacing the process of taking a history and working out what is wrong with someone.
Dr Byrne: It is a terrific question. Healthcare is a relationship; it is not simply a transaction of facts. At its best, it is a working relationship between a clinician and a patient, but that is also why it is so hard sometimes. Our stories are a combination of two things: the facts and the interpretation of those facts. We heard a moving example earlier of someone saying that they had had five miscarriages and those facts were then not known and how distressing it was that they were not. That is a good example of why getting the facts from conversation to conversation could be really helpful.
Our life story changes over time, however, as does the interpretation that comes up in a conversation. As a doctor in the moment with a patient, I am sometimes as interested in what they are choosing not to tell me at a particular time as what they are choosing to tell me. For all of us, the story changes and is fluid. I think that is a potentially helpful distinction to make.
Karin Smyth
Q
Dr Cocker: Having seen the maternity-focused prototype that NHS England developed in the north-west, we learned that it is technically difficult because there are lots of systems. There needs to be a level of interoperability that allows you to pull the data or it is not going to be much use as a reliable system.
The other thing was about trying to ensure that we design those systems for the patients most in need. That might be social or medical need, and there are many different facets to that. That was one of the other challenges. A lot of the focus went into trying to determine a set of theoretical patients who were very high need, and ensuring that you have encompassed all those possible needs, so that if you design the systems for those in most need, they will cater for as many people as possible.
Dr Imam: To expand on Dr Cocker’s point about the identification of problems, people living with frailty often have multiple under-identified issues. In the prototype we have been shown, the SPR has the potential to analyse the wealth of data on a person and summarise it in a manner that makes sense to the clinician logged into the record. It can also piece together a timeline of what has been happening with a person.
As I said earlier, we often follow a manual process to try to understand what has been going on recently for a person. The SPR will not only enable the automation of that process, but give us the ability to know who the key individuals involved in that person’s care are, so when that person is in a crisis or emergency situation, we know exactly who to call and who the last person to touch the patient was.
There are other important functions. It is not only about sharing information across an entire pathway and having the whole-system approach that I described—from community to hospital, and vice versa. Importantly, many people living with frailty require multiple different referrals and the involvement of multiple different people in their care. The SPR will be able to streamline some of those processes and make recommendations for certain referrals that a clinician, who, under an earlier version, would have logged into the record, may not have otherwise thought about, so it may even improve outcomes for patients by providing solutions to improve their care that we would not have come up with otherwise.
Peter Prinsley
Q
Dr Byrne: I totally support that ambition. Patients and the public having more agency in their care, strengthening that relationship, and them being able to access their information through the NHS app is a great thing. That is hugely helpful, and there is real potential with the SPR to strengthen that. We have landed on agreement.
Dr Johnson
Q
Dr Byrne: At the moment, I think it is too early to say. Those are absolutely important questions that will have to be addressed in the design. At the moment, I am not sure how the programme intends to deal with those questions, but clinically, that needs to be thought about. There are complications that need to be thought about very carefully in terms of the record and the access. Sometimes that is clinically complicated, but I am not aware of what the plans are for that.
Dr Johnson
Thank you. You are nodding, Dr Cocker.
Dr Cocker: I was just going to say that we did do some exploratory work in relation to safeguarding, because that is quite a key part of safe maternity care, but because of the issues with confidentiality for other involved parties—say, a mother’s partner or someone else in the family—and the risk of that information being pulled through to someone else’s single patient record, it was felt that we could not include any information that contained information about anyone else. That aspect has been considered, but as Dr Byrne said, it would need careful consideration of all those different sources and whether there would be any option to change what feeds in. The only one I am aware of that we have looked at specifically was safeguarding, and it was primarily due to confidentiality issues for other involved parties.
Dr Johnson
Q
Dr Cocker: Yes, and those are concerns with the existing systems. There are multiple sources of information we record on a clinician-facing basis that might be deemed sensitive or confidential that are not available from a patient-facing perspective. It might be sexually transmitted infections or previous pregnancy history that a mother does not want someone else to be able to access on the patient-facing aspect of the record. Being able to provide that is very important in realising the end product of the SPR.
The Chair
Dr Byrne, Dr Imam and Dr Cocker, thank you very much indeed for your patience and for affording us the benefit of your experience and wisdom. The Committee is most grateful to you.
Examination of Witness
Jon Restell gave evidence.
The Chair
We will now hear oral evidence from Managers in Partnership. We have until we have exhausted ourselves—I will say that for the moment—for this session. Would you be kind enough to introduce yourself for the record?
Jon Restell: I am Jon Restell, the chief executive of Managers in Partnership.
Dr Johnson
Q
Jon Restell: There are lots of different ways to answer that. Obviously, some functions of NHS England moving into the Department, with powers going to the Secretary of State, feels like a centralising measure. I know that the ambition of Government is to give local NHS bodies more freedom and autonomy, but the Bill is very careful and goes into a lot of detail to leave powers with the Secretary of State to intervene in the running of those local bodies. On the whole, it is probably more of a centralising measure.
Another way that some changes outside the Bill process are centralising is through the merger of ICBs and, arguably, quite a lot of providers. Whereas before you might have two or three ICBs covering an area, you now have half the staff covering much bigger geographies. I would argue that that centralises decision making to a higher level than formerly.
Dr Johnson
Q
Jon Restell: This, for us, is the crux of what is going on. The Bill is the Bill, but there is a finite management resource in the health service. I think that, internationally, it is considered to be quite low. Certainly, Lord Darzi, the Institute for Government and Institute for Fiscal Studies have all pointed to a shortage of management being one of the potential weaknesses of the NHS, so what is going on right now is knocking another big hole in an already limited resource of managers in the health service. That has the potential to create very large workloads for people in the new system, such that, inevitably, certain things will not get done or will not get done well enough. It certainly feels like we have gone into an environment where we are cutting a management cost without thinking about the management capability the health service needs to innovate, deliver reform, and do basic safety and resource management.
Dr Johnson
Q
Jon Restell: Our members have been on a bit of a journey on this one. I think that they would broadly support the regulatory proposals that the Government will bring forward after the consultation. I think the real impacts will be very limited, covering a relatively small number of people and being used in very exceptional circumstances, so I do not think that they will transform management culture and deal with the management capability issue we have. They are a very personal form of professional regulation that will have very limited impact.
Dr Johnson
Q
Jon Restell: That is probably driving most of the anxiety and uncertainty that people are experiencing, and it is why, for some members, this is becoming psychologically very difficult. You have a change programme that started in March last year with the announcement by the Prime Minister of the abolition of NHS England and the halving of the staff of NHS England and ICBs. For 18 months, that process has dragged on, with lots of design decisions still to be taken about how the organisation will look, what functions it will have, what will be going to the Department and what might be going elsewhere, and what will potentially go to trusts from ICBs and from ICBs to regions. Despite all that uncertainty, people are being told to make decisions about voluntary redundancy and the future where they do not understand where that future potentially sits for them. That is undoubtedly driving a lot of people to feel psychologically unwell and distressed, and they are leaving. People are beginning to leave, because they need to protect themselves.
There is another part to this. Obviously, that is a very personal issue for our members, but the other thing is that they are really worried about the service to the public, the safety of the changes and what will happen to various functions that they are responsible for, if teams get halved and responsibilities are taken to a higher level in that more centralised model.
For example, we have a lot of members working in ICBs who have really hands-on roles in the care of individual children, particularly where providers fail. Those kinds of concern are not being properly addressed in terms of risk and continuity of service to those people. We are going to survey our members—we will share the results with the Committee—in the next week or so about what specifically is worrying them about the way that change is being managed. With due respect to the Minister, this was all announced without a plan, and we are now waiting for a plan to emerge, 18 months into the process.
Dr Johnson
Q
Jon Restell: Obviously, we have the 10-year health plan, which most people broadly see as a good vision for the service, but there are too many key design questions around the new department, the role of the department’s regions, what ICBs will be doing and what trusts will take on as part of this reorganisation. Behind it, there is a lot of capacity and resource organisational memory being taken out of the system.
We do not talk nearly enough about the work of the commissioning support units staff, who are providing internal consultancy and a huge range of business services to the health service, including overseeing child immunisation programmes in some cases. It is really unclear what the future of those functions is. We are taking out a lot of staff who have skills, expertise, organisational memory and commitment, but we do not quite know yet what the precise form of those organisations will be. It is a very difficult change to manage.
Karin Smyth
Q
We had a lot of change with the Health and Social Care Act 2012, and the Bill seeks to reverse that in terms of the architecture of the NHS. We absolutely appreciate as a Government that that is very difficult for staff working in it. I appreciate that the operating model and so on is coming forward, but could you say a bit about people’s feelings about the Bill? There will be more clarity to the centre and the role of providers is not changing, while the real change is around commissioning functions and, as you said, commissioning support organisations. We heard earlier that everything is being reorganised. That is not true, but there is a big change in the geography and the functions of ICBs and commissioners, and the Secretary of State’s role will clearly be different. What might people’s approach to that be?
Jon Restell: Clarity, definitely. No one wants to start with the system that came in in 2011 and 2012. Successive Governments started to correct it almost as soon as it was put in place. I think most people would welcome sorting out the clarity around commissioning there, but I do not think that is the same thing as cutting 50% of those organisations’ staff and running costs. You are clarifying the relationship between the centre and ICBs, commissioning and providers. You still need enough managers with enough skills working in the right system to deliver. That is the nub of what we are doing.
For us it is not really about how the Bill will eventually pan out; it is about the cut and how that is being administered by NHS England, the Department and ICBs. The whole system of management is under strain across the health service. You say that providers are not changing but they are also being asked to take out quite significant amounts of management resource. They are merging to form bigger, potentially more centralised units that may be less responsive and less innovative. I think that organisational form is really important, even if the headline of the Bill might tidy up and clarify those relationships, which would be welcome.
A point made by a lot of members, particularly those in ICBs, is that they do not think that the model design—where we started with ICBs, then went to regions and we are eventually going to get to the target operating model for the Department—is being done at a time where you can see the proper connections that need to be made between those organisations. When the system is up and running, how well will it work together to share information, share risk and so on? It feels like the Bill is very high level and the detailed design of the organisations is being undertaken in a completely fragmented way. People see that as potentially requiring the next round of reorganisation. You are a former NHS manager, Minister; you know how often reorganisation is reached for as the solution. I genuinely feel that people have got to the point where enough is enough. That kind of continual change will create more and more problems for doing the things that the public actually want to see: innovation, improvement in the quality of service and happier staff—all the things that managers should be focused on, not the merry-go-round of organisational change.
The Chair
We shall now hear oral evidence from Sir Andrew Dilnot. Sir Andrew, for the benefit of the record, could you identify yourself, please?
Sir Andrew Dilnot: I am Andrew Dilnot; it is great to be here.
Dr Johnson
Q
Sir Andrew Dilnot: It is largely absent from the Bill—indeed, when I was asked to come and give evidence to this Committee, I was initially somewhat puzzled, since it is so largely absent. The question you ask is absolutely to the point: certainly, we can improve the efficiency of the NHS without doing anything about social care, but we cannot really address many of the fundamental problems facing the NHS if we do not sort out social care.
That is partly because not having a good social care system means that we are not achieving the levels of human flourishing that are the objective of the health service and the social care system. It is also the case that the social care system is now under such pressure that it is leading to direct challenges for the NHS. We hear a lot about delayed transfers of care, which are an important part of this, but it is not just those; it is people who end up needing healthcare because they have not had appropriate social care support.
The short answer to your question is that we can make the NHS a bit more efficient without reforming the social care system; but until we address social care we have at least two hands, and probably one foot, tied behind our back. It seems pretty astonishing to me that we have a 10-year NHS plan but no real plan for social care.
Dr Johnson
Q
Sir Andrew Dilnot: I would not claim to be expert here, but I have read the Bill and the briefings. The role of local authorities in social care is a very interesting one. If we were to stand way back and honestly answer the question, “Why is social care managed by local authorities at the moment?”, we would say, “Because it was forgotten in 1948, when the rest of the modern welfare state was created.” At that stage, social care was a pretty small activity, and it was just left with local authorities. What has happened since then is that it has grown and grown, and it is now putting enormous strain on at least many local authorities.
I think we should draw a clear distinction in something that is definitely appropriate—that is, care being provided within a local context. The kind of care that is appropriate in Camden will be different to the type of care that is appropriate in the highlands of Scotland. Local delivery seems relevant, but whether local financing makes sense in 2026 is a very big question. That is the context.
On its own, it is hard to see the potential reduction in the role of local authorities in ICBs making things better. It will not necessarily make things significantly worse, but I do not think it will help local authorities and the NHS in trying to integrate these two essentially non-integrated functions.
Karin Smyth
Q
Sir Andrew Dilnot: The question of the fine details of how legislation should be passed is certainly outside my skillset, so I have to be agnostic about whether the Bill should have addressed the wider questions of social care. On the question of whether we could address social care or not, the answer is definitely yes. After all, several Governments over the last few years have promised to do so. The former Secretary of State for Health and Social Care, when he was the shadow Secretary of State during the election two years ago, promised that he would do it. Such measures have received Royal Assent twice, but they have still not taken place, even though they were promised by the then shadow Secretary of State for Health and Social Care, before he became the Secretary of State.
Yes, we definitely could do it. The amounts of money involved, while of course significant, are small relative to the aggregate costs of the NHS or the uplift in spending on the NHS that, with my full support, we have seen in the last couple of years. I think it is a genuine puzzle and a black mark for all of us, including me, that all these years have gone by and we have done nothing. We have a social care system that is supported by millions of wonderful informal carers and about 1.5 million formal carers, benefiting hundreds of thousands of people, but it is creaking under intolerable strain. It really makes no sense to me, and I really do not know why or how we have managed to go for so long without addressing it. We should do so, not only because it is the right thing to do, but because it is now so bad that it is doing direct, instrumental damage to the NHS.
Joe Robertson
Q
Sir Andrew Dilnot: That is a very good question, to which I do not have a very immediate answer. Well, I do have an immediate answer, which is that, as far as I can see, it is nothing very substantial.
The single patient record offers some prospects here, and it is terribly important for people receiving social care, which again reflects how much longer we are living. There is much more multiple morbidity now. Many of the people who can and are benefiting from social care will have quite complicated medical experiences and histories. That is the kind of group that could particularly benefit from a single patient record, so that we are not having inappropriate prescription and so on. That is going to help, but it will be a second-order issue.
Let me be very blunt. There are two fundamental challenges facing the social care system. The first is that the means-tested bit of it, where we say, “If you don’t have any resources of your own, the state will look after you,” must be a minimum for any humane society. Essentially every year for at least the last decade, the Treasury has announced emergency funding for that in year. That money then does not get spent well. Honestly, if you are announcing an emergency package every year for 10 years, it is not an emergency package. You should wake up, pay attention, have a mature response and fund that system properly. That is the minimum.
The second is that the only big risk we all face that is not pooled is social care. Our risk of healthcare is pooled by the state, our risk of having a car accident or our house burning down is pooled by private insurance. This is the one risk that is not pooled, and the reason is that the state does not, and the private sector cannot. The reason the private sector cannot is that it is too far ahead for a private insurance market to deal with it, so only the state can pool the risk. If there is any area where the case for social insurance is absolutely clear, it is social care; the case is even more powerful in social care than it is in health.
At the moment we have a situation where often people will feel that the best thing that can happen to them, if they think they might have a social care need, is that they die before too long. It is a bit like standing in the middle of the road with a lorry driving towards you and hoping that the best thing that might happen is that you die before it hits you. That is not a good way to be running any kind of society or country. Those challenges—the lack of adequate funding of the means-tested system and the lack of any risk pooling for the population as a whole—lead directly to the kind of experience that you are describing in the Isle of Wight, where there is simply excess demand and so we are trying to ship people across to the mainland. It is a reflection of the fundamental challenges that we have ignored for 35 years.
Dr Johnson
Q
Sir Andrew Dilnot: You are absolutely right to emphasise the importance of non-elderly adult social care, which is roughly half of all of the expenditure and growing. One reason that we see particular pressures in the elderly care sphere is that the less-elderly need has grown very dramatically, again because of the scope for increased human flourishing.
On the whole, as far as I can see, there is very little understanding of the integrated nature of these costs between social care and the NHS, so I think there is very little thinking in budgetary terms about the consequences of the squeeze on social care leading to increased expenditure and needs elsewhere in the NHS. That is not easy to resolve. Moving to a system that properly integrates those trade-offs will be difficult, and it requires a different sort of funding regime, but while we do not, those costs exist. My sense is that they are second order at the national level, but where they are certainly not second order is for the individuals concerned and their families, for whom this kind of thing is an eruption of anxiety and grief, in the context that families are already under pressures that most of us would find hard to imagine.
The Chair
Thank you very much indeed, Sir Andrew, for affording us the benefit of your considerable knowledge in this area, and thank you again for your patience. We are most grateful to you.
Sir Andrew Dilnot: Thank you. I am delighted that you are thinking about social care in the context of this Bill.
Examination of Witness
Karin Smyth gave evidence.
The Chair
Minister, for the sake of the record, would you identify yourself, please?
Karin Smyth: I am Karin Smyth, the Minister of State at the Department of Health and Social Care.
Dr Johnson
Q
“The reorganisation of health services always distracts from people’s jobs, destroys morale and wastes money”.—[Official Report, 22 September 2020; Vol. 680, c. 809.]
In response to a written question this week, though, which asked what assessment you have made of the disruption of development of new services caused by the abolition of NHS England, you said:
“The abolition of NHS England is causing no disruption to the development of new services.”
I wonder which of those statements you agree with the most and whether you want to change your mind in the light of any of the evidence you have heard today.
Karin Smyth: I do not know exactly what year you are quoting from, but I am happy to take that full on. Of course, change, reorganisations and changes in legislation have consequences at different times depending on what they are. That will determine changes to some services at local level.
I think that quote probably relates to the 2012 changes, which, as I have often said, brought me into Parliament. The entire infrastructure of the health service was destroyed and changed in order to bring forward that legislation. I can never find anybody—I think I have heard Lord Lansley say this—who thinks that was a good thing. I am very happy to say that part of the rationale was the fact that, despite lots of warnings about the damage to that infrastructure, that lesson was not learned. We will not go through the history of the passage of that Act. It even had to be paused mid-way through to enact other ways of making things work.
I am sure that you will come back in your second question to decisions about some of the provisions in this Bill. It is true, and a matter of record, that as an incoming Government we did not intend to abolish NHS England as an organisation; in our determination to change the outcomes of the health service, that decision was made some eight months into our being in government. Today, we have not heard a single person suggest that that decision is wrong. Dr Johnson is from the Opposition. The Bill was not opposed in principle on Second Reading. There is overwhelming consensus on the major provision in the Bill—the abolition of NHS England—and on the single patient record.
I am mindful, on a personal level, of the consequences for individual people’s jobs and of trying to get that right. I accept much of the criticism from Mr Restell about how it would be better to do it much more quickly, and about making sure that it is done in a different way, but the consequences of abolishing NHS England are some of the things that we are seeing.
Dr Johnson
Q
Karin Smyth: In terms of service delivery—I think the written question was about delivering services— I stand by that.
Dr Johnson
Q
Karin Smyth: Do you mean the future state of ICBs?
Dr Johnson
No, I mean the system as a whole. My right hon. Friend the Member for Melton and Syston spoke earlier about how ICBs were designed to link in with upper-tier local authorities, and he gave a reason why. Under these reforms, Lincolnshire ICB, which was part of a mayoral authority, will now link in with Derbyshire and with Nottinghamshire, which are part of another mayoral authority but not a complete mayoral authority. You have things jumbled up. I wonder whether that is because, rather than having a vision, you have started to unpick somebody else’s work because you did not like it. Likewise, with the single patient record, we have heard that lots of necessary decisions were not made before the Bill was introduced, so people are being asked to deliver things that have not been properly considered. Is that fair?
Karin Smyth: I think they are two separate things. On the provision made in the Bill, abolishing NHS England brings with it a lot of technical detail to ensure that the legal responsibilities and duties are placed, rightly, on the Secretary of State and into ICBs. It clarifies the landscape on very technical matters such as licences and foundation trusts, and there is a large chunk of detail on the consequences of abolishing NHS England.
Alongside that, there is a move to give ICBs a larger footprint, in parallel with the Government’s agenda on devolution. I accept that that is a lot of change in all our constituencies and for all our areas. We are making sure that we make the most of mayoral authorities to allow mayors to be on ICBs, as they are largely determiners of a lot of economic development, transport and indeed the wider determinants of health. We are still going through some of that change; you will recently have been written to for your views on it as local Members of Parliament, along with local government. We need to make sure that that is embedded as quickly as possible so that we can stabilise that side of the system.
On the single patient record, the Bill will provide enabling powers to bring it forward in regulations. There will be further detailed consultation both with clinicians and with patients and the public, as we have heard, because building trust is critical. That will come next, which is usual in parliamentary terms: as legislators we understand that primary legislation makes provision and secondary legislation sets out regulation. I thought Dr Byrne was very helpful earlier on the point about bringing public trust with us and explaining the two stages of bringing this forward.
Dr Johnson
Q
Karin Smyth: There is a fundamental philosophical, and perhaps political, difference in the approach that this Government are taking compared with what has gone before, in terms of the notion of responsibility and accountability for both commissioning and delivering services, and the position of independence. We talked earlier today about perception and reality.
The system has not worked. To my earlier question— I think I said this on Second Reading—we have had what is called an independent voice in some of these bodies for over 50 years, and we have had numerous recommendations. I disagree with Jeremy Hunt on this. Under his stewardship of the new NHS England, we had a plethora of recommendations and new organisations, and layer upon layer of bureaucracy, totally remote from any kind of democratic accountability or oversight. That is not working, and I do not think that anybody is really defending that.
It is the job of the NHS—both providers and commissioners—to include patient voice and patient experience in their work. I think Ciarán Devane from the NHS Alliance said that getting boards right, in terms of their managerial, clinical and patient experience work, is their responsibility. Outsourcing lots of that work to other bodies has not worked, and I think it is outsourcing that responsibility. We have to make boards work at a local level; they have to step up to the plate, and I think they want to. They are certainly equipped to be able to do that—not taking into account that people will need some skilling in some of these areas. There is a debate to be had about independent organisations, and I think we will have a good debate on it in Committee.
As a final comment before you come back, this is a bit of a bugbear of mine, and perhaps as I am speaking on behalf of the Department I should not say it, but I will: none of my constituents are hard to reach—not a single one of them. We know exactly where they are; we largely know what is wrong with them; we largely know what their health outcomes are going to be; we know their ethnicity, demographics and so on. What are hard to reach are the remote organisations that have not served them well, and that is what we are determined to put right. Putting that right in this Bill is the start of doing that.
Dr Johnson
Q
Karin Smyth: I will come back to the waiting lists, but you are absolutely right about trust. In saying that I expect this to be the board’s job, I think it is its job to get this right, and we need to support it to do that. We heard a bit from Penny Dash about the national quality board and the patient experience directorate inside the Department of Health and Social Care reporting directly to the chief executive and the permanent secretary. That has to be part of the wider architecture, which is of course outside the Bill, so we need to be able to tell that story to the wider public.
We know from all the recommendations, reviews and the support that we give as Members of Parliament to our constituents that trust is really important. Getting that right and bringing people on that journey with us will be really important. Independence helps with that, and that it is why it is good to debate it as we consider the Bill—it is good to be able to air some of it—but I think people accept that things are not working and have not been working.
I think your question about waiting lists is about the data and the information that says where we are at. It is really complex. To follow NHS England’s data, of which there is a lot—I commend the amount of data that is available—you need to be quite clever at spreadsheets, and at finding and articulating data, in order to bring it back to your own constituency and local place. These things are complex. It is complex to record, track and recognise how people move through a waiting list, for example.
It is good that we are transparent about that. One thing that I am keen to push out is data on performance in trusts. Making so-called league tables is controversial, but the more information that we have out there, and the more we have honest debates about how complex and difficult it is—I am happy to take your questions around how that moves in order to for us to explain that—the more that helps to build trust.
Liz Twist
Q
Karin Smyth: I will come to the single patient record because I think it is a gamechanger. We have heard today from some fantastic experts about the work they are doing to identify how it might work and how we might bring patients and the public with us. Again— I do not think we should just bank this—we have not heard anybody object to it.
We did have some evidence highlighting how things have gone wrong in the past. I worked at a primary care trust and clinical commissioning group at the time when care.data was brought forward. We can all point to where it has gone wrong, but nobody has said that this is not the right thing to do. That is good, but there is still a lot of detail to go through.
We need to keep highlighting the benefits. We heard from Peter Prinsley about whether patients have more control—we do think this is about empowering patients. That was what we said in the 10-year plan. The 10-year plan is about empowering patients in this very large system, for which they are now paying £200 billion of their taxes.
We heard from the excellent clinical panel. I defer to clinicians about what they need, both if they are dealing with chronic long-term conditions—we heard that it can sometimes take two and a half hours for an assessment—or if they are working in a busy emergency department. The fact that this is needed will be controversial. There will be a lot of questions about it and a lot of concern about privacy, data, cyber and so on. We need to hold on to those benefits, which are huge in clinical terms and for patients.
Another point we heard, which is also true, is that people think this already happens. People do not understand why, when they turn up at an A&E in Whitby, as we heard, or somewhere else, and then go back to central London, the systems cannot talk to each other. For me, that is about people’s trust and belief in what is a public service. It is a really important part of that.
On abolishing NHS England, I do not think anyone has come to one of my constituency surgeries and said, “Please do this,” or talked about it in great detail, but people do understand. My experience in opposition and so far in government is that MPs are perplexed when they try to intervene on behalf of patients, or to get an answer locally as to why on earth chief executives of ICBs or trusts sometimes do not respond even to a Member of Parliament’s requests for meetings. I find that shocking, but it does happen. How on earth is a patient or somebody struggling through the system expected to get a response? Getting it right is not black and white, and it is not easy to get the balance right between the Secretary of State’s democratic oversight and autonomy at a local level, but the Bill starts the process of doing that, and it is fundamentally important.
Regarding the other provisions, I accept that great work has been done by many people in Healthwatch and its predecessor organisations, and by people working in the patient safety landscape, but again it is not working. I think that those bodies have been allowed to abdicate responsibility for the core role of patient experience and patient voice. That is not their homework; it is their actual job. It is not something that should be outside, and that is why I think this Bill is really important.
Health Bill (First sitting)
Caroline Johnson Excerpts(3 weeks ago)
Public Bill CommitteesRead Full debate Read Hansard Text Read Debate Ministerial Extracts
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
I am a member of the Royal College of Paediatrics and Child Health, a member of the British Medical Association and an NHS consultant paediatrician.
Sojan Joseph (Ashford) (Lab)
I used to work in a mental health trust for many years, and I am still its employee—I am on an extended career break from the trust.
The Chair
You are, absolutely. Normally, as a courtesy, I allow a very brief comment if you want to say anything.
Dr Dash: No, thank you.
Dr Johnson
Q
Dr Dash: I do not believe it is affecting our ability to deliver. Much of the work to date has been led by a joint team of people from across NHS England and the Department of Health and Social Care, who are working together, have put together a process and have been going through all the things you would expect of any integration process. That has been a fairly confined team.
As they are starting to look at what needs to happen in each of the different functional areas—the different directorates—that we have set out, they are working with the directors general or the executive directors leading each of those to understand what different functions we need to enact within each of those directorates, and what their teams could look like. They are putting time into that, which is good—that is what we want them to do, not least because they are also looking at ways of working, not just at numbers of people—but I would not say that it is a distraction. In fact, in some ways, I would say it is really helpful, because it is helping to define the core priorities and the key things that we need to focus on, and how we can continue on the journey of seeking to improve health and healthcare services. That is across those executive directors and directors general.
The team who are putting a lot of time into this, not surprisingly, are the people working in the HR functions. That team are spending a lot of time going through the mechanics, and they have been managing things like the voluntary redundancy programme. I would hope, and I believe, that there is no negative impact on our focusing on what we need to focus on.
Dr Johnson
Q
Dr Dash: On the first question, as you say, my first review looked at the CQC, and that there are a number of considerable challenges there. I would have hoped that, by now, many of those challenges had been addressed. Some of them have been, but some of them have struggled. It has already gone from the previous chief exec to a new chief exec, and it is now out looking for another chief exec, and the chair has changed too. That has definitely impeded progress. As I said, it has made considerable progress in some key areas, in particular the use of technology, but it still has a way to go, and we all need to acknowledge that. I note that the ministerial team in the Department of Health and Social care has suggested that the integration of HSSIB into the CQC should happen only when the CQC is in a more stable position, which sounds sensible and pragmatic to me.
On the second review that I did, I was asked to look at the regulatory and quasi-regulatory landscape. I was referred to a report that had been done by Professor Carl Macrae and others that talked about 126 organisations. When I looked, I found more than 150, and I listed all of those in my report. I spoke to many people—well over 200 people who joined various roundtables and so on—and the very consistent theme was that this is so busy and confusing, and keeps leading to all sorts of different recommendations from different organisations, but also to people having continually to respond to all these different bodies asking for people to fill out a form, asking questions and doing reviews. As a result, our clinical staff—not just our nurses, but all our clinical staff—are having to spend considerable time filling out those forms and going through tick-box exercises. You will hear people talk about that a lot.
The concern is that this very busy landscape is distracting from what it is there to do, which is to improve quality of care. I was asked by the Department of Health and Social Care to look at that landscape. I was asked to focus on six organisations, which are listed in my report, of which HSSIB was one. Across the six—of course, six is a small number out of that 150—I was asked to look at where there were opportunities for rationalisation and simplification. The observation was that colleagues in HSSIB have some great skills and capabilities in carrying out investigations into healthcare, highly complementary to the work of the CQC, which is equally there to understand how well different organisations are performing, to give the public confidence, to give ratings and to identify problems, and therefore putting those two organisations together would create significant synergies and opportunities for them both to work well.
Dr Johnson
Q
Dr Dash: I do not see a conflict. I think they are complementary and this is all about improving the regulatory landscape in the healthcare system.
Karin Smyth
Q
Dr Dash: One of the things that I observed when I was doing the review, and that I have observed even more so now that I am in post, is that we do not have effective mechanisms of really learning from patients and patient experience. If I compare how the NHS works with how other large organisations in our country work, we are not systematically collecting patient information, we are not looking at that in detail, we are not segmenting it into different groups of people, and we are not systematically bringing it into board meetings, which is where it should be in order to drive improvement. We are hoping, or expecting, that the new director of patient experience will take a real leadership role in this and will improve the way in which the centre works but, more importantly, will be working with organisations right across the NHS to build those skills and capabilities, and to put patient experience feedback and improvement in patient experience right at the centre of every discussion on improvement.
The Chair
We will now hear evidence from the King’s Fund and National Voices. Again, I fear that we will have to stick to the timings, as we have very limited time. We have until 10.25 am for this session. Could you please identify yourselves for the record?
Sarah Woolnough: I am Sarah Woolnough, chief executive at the King’s Fund.
Jacob Lant: I am Jacob Lant, chief exec of National Voices.
Dr Johnson
Q
“would be minimal in the context of the entire NHS budget”.
Many MPs across the House have struggled to get numbers and costings in questions both oral and written, particularly in relation to staff redundancies. We have not received information on the full arrangements of where NHS England’s functions are going to go yet. How can we be sure that its abolition will save any money at all?
Sarah Woolnough: I think, on the basis of the question, we do not know. Our worry has been about the opportunity cost. The Government, when in opposition, said that they would not launch wholescale reorganisation, because they understood the potential opportunity cost on time and other resources. As this has played out, taking longer than anticipated, we have had multiple examples of teams left in limbo about where they will end up in the target operating model. Our ongoing concern has been, “Is the benefit worth the cost?”
Dr Johnson
Q
Sarah Woolnough: It is inevitable that, in any large-scale change in an organisation, there will be opportunity cost. These arguments were very well rehearsed by the previous Secretary of State. He undertook personally that he would not follow this course of action, exactly because these things take longer and cost more, and because the benefit realisation case is not always clear.
It is also quite hard to tell—we have grappled with this as a think-tank—whether there is good evidence of what you are delivering at the end, and whether the benefits will be realised as you stated they would be up front. It is harder to get the granular evidence and costings to prove the case, but our ongoing concern has been whether you need to wholescale reorganise to drive the sorts of benefits that the Government have said they want to deliver.
We absolutely understand and agree with those who say, “Let’s reduce duplication. Let’s streamline. Let’s make sure that we’re getting value for money and spending taxpayers’ money wisely.” Do you need to launch a large reorganisation—a mass rearranging of the deck chairs of this nature? Our view has been, “You shouldn’t and you don’t.”
Dr Johnson
Q
Jacob, what effect will the abolition of Healthwatch have on people’s confidence in the independence and reliability of views of patient experiences?
Jacob Lant: First, it is important to note that we know that there are people who are reluctant to come forward and share their poor experiences of care with the NHS directly. They fear retribution if they complain or speak up. Research by Healthwatch has shown that about one in five people experience poor care, so a significant proportion of people are unwilling to come forward and speak to statutory agencies. That will be concentrated in communities who are particularly marginalised—those who already lack trust in institutions. There is a clear case already that there will be a group for whom the lack of independence will be a real concern.
The second point is about the unsolicited feedback that is gathered by the Healthwatch network. Dr Dash and others have talked about how the system does lots of engagement itself, and how it could therefore surely take over those functions. But the system engages on its terms: it is about service reconfiguration that it wants to do, or about trying to gather experiences on a particular topic in which it is interested. Healthwatch allows an opportunity for continual listening and engagement with communities, where they can speak up about anything that is affecting them, from dentistry to patient transport and administration of care. Those issues are not necessarily on the system’s agenda. As I see it, under the changes that will disappear.
Dr Johnson
Q
Jacob Lant: There are a few points on that. The narrative around the Bill is that Healthwatch is being abolished and its functions lifted and shifted across to local authorities and ICBs. That is not the case. We lose a number of important functions.
For example, the signposting support that Healthwatch provides will disappear so patients and care users will not have that to help them to understand how to navigate local services. I mentioned the unsolicited feedback that is gathered; that function will disappear. The outreach into communities, particularly marginalised communities, will disappear. The voice for patients and communities on health and wellbeing boards disappears, so there is no feed into those local decision-making bodies. There are several places where there is not a direct lift and shift across. That is a concern, and the Committee should probe it further.
On the resourcing point, at least local authorities will get part of the existing funding for Healthwatch to support their functions in that space. Under the Department’s impact assessment, ICBs will not get any funding from the current pot. That represents a 50% cut in the resourcing for listening to patients and communities, which is a concern.
Karin Smyth
Q
Sarah Woolnough: As an organisation, we have taken the view that we would not necessarily relitigate the decision. I think you can argue it both ways. I understand the desire to reduce duplication and to have clearer lines of accountability. Our concern has been the opportunity cost and everything that you are not doing at the time that you are spending so much energy and resource driving the abolition through.
Jacob Lant: I would echo everything Sarah says. From the work that we do, we see that decision making is taking longer, programmes are taking longer and it is taking longer to secure an impact on things. That is very frustrating, and underpinned by the massive change that is ongoing. Let us take as an example a programme exploring the experience of waiting for hospital care—of being stuck on waiting lists. Jim Mackey spoke about that at the NHS ConfedExpo last week. It is a major focus for the NHS and new guidance is expected by the end of the month. We have been waiting for that since 2021. The most recent effort towards it has been about 18 months. I can only think that drags on because we have so much other change going on in the system. I wish we focused more on doing things directly for patient care.
The Chair
We shall now hear evidence from the Academy of Medical Royal Colleges and the Institute of General Practice Management. Once again, I am afraid we have to stick to the timings. This session will end at 10.55 am. Will the witnesses briefly introduce themselves for the record?
Kay Keane: I am Kay Keane, a full-time practice manager at Urban Village medical practice in Manchester, and the chair of the Institute of General Practice Management.
Dr Dickson: I am Jeanette Dickson, the current chair of the Academy of Medical Royal Colleges, a past president of the Royal College of Radiologists and a practising consultant clinical oncologist.
Dr Johnson
Q
Dr Dickson: I would go back to some of the comments that have been made before. It is the opportunity cost at the moment. We know that the workforce plan is being worked on in the background, but when you are unsure what the operating and delivery model will formally look like, there is a difficulty in seeing what the workforce for that will be. We are also talking about massive changes in the way we think about care delivery—movement into the community and a different way of working—so we need a different workforce.
Therefore, we need to put in some work to look at how curricula drive a different type of workforce, how we train people to work in a different way and how we empower them to see the opportunities to work in that way, when they do not have actual role models. We need a culture shift anyway, whatever is happening, but the abolition of NHS England is in many ways increasing the time. Things need to move, and they are moving, but they are not necessarily moving as fast as they should.
Dr Johnson
Q
Dr Dickson: We are delivering services as normal, but that head space and the innovation to see what the future should be and to work towards that future actively are limited by not knowing what that future looks like.
Kay Keane: We do not know what the left shift that we keep hearing about looks like; we do not know what that is for practices. In general practice, we are very practical—we get on with what is in front of us—so the big organisational changes do not have a huge effect on the day-to-day seeing of patients and organising that, but understanding what is around us does.
Dr Johnson
Q
Dr Dickson: The legislation is very much an enabler for a single patient record. The devil in the detail there is not entirely true. In my experience, if you ask most patients if they would like a single patient record, they feel that it is already there. They do not understand that we do not have the ability to share their data in a way that works for them. Therefore, the idea of a single patient record is very much a lodestone for medical practitioners and most patients. When you talk them through the detail of how you achieve that and who owns the data, it is a much trickier issue for many, including the professionals, but also the public.
Kay Keane: I agree. The detail is not there at all. At the moment, we look after the data that is in the GP summary care record. That creates lots of questions for our patients. They will see information in there that they are not sure about or that they want help with. They will perhaps be able to read some of their hospital letters within that record. However, lots of patients have a variety of health inequalities that might mean they cannot access that data. In general practice, our non-clinical staff often help them to navigate their way around all that information. We also have patients who will read something in their record on which they want clarity—maybe something that happened a long time ago that they cannot remember and want explaining to them.
All those things take time. Where will the responsibility for that go? It takes an awful lot of resources in general practice to educate and support patients and to help them navigate their appointments and the letters coming through. Where will that responsibility sit? At the moment, it is of course with the GPs, but practically it is practice managers, up and down the country, who take on the day-to-day responsibility.
Dr Johnson
Q
Dr Dickson: You need to believe that you have found out enough about a patient to deliver their healthcare. I would turn it around and say it is very difficult to deliver appropriate care to somebody on whom you do not have full information.
Karin Smyth
Q
Dr Dickson: Part of it has been touched on by the previous panel, regarding patient experience. Patients come in, they give the same story again and again to different healthcare professionals in different settings, and that frustrates them. Patients are human. I forget what I did last week; patients forget what they did last week, let alone what they did 10 or 20 years ago, although that is still relevant, increasingly. If you go on holiday to Whitby, fall over and break something, have tests done and come back to your house in central London, you cannot see information about that; you cannot share that information.
The opportunity to see everything on a patient across primary care, secondary care and social care is a huge benefit to them in terms of their view of seamless care, but also in terms of safety. I have a chronic health condition; part of my care is delivered by general practice and part by a hospital. At the start of the pandemic I was exceptionally clinically vulnerable; it took the NHS six weeks to tell me that. That is not safe.
The Chair
We will now hear oral evidence from the Health Services Safety Investigations Body. Again, we must stick to the timings, but we are doing rather well at the moment—let us hope we can stick to that. Would you be kind enough to identify yourself for the benefit of the record?
Dr Benneyworth: Good morning, everyone. My name is Rosie Benneyworth and I am the interim chief executive of the Health Services Safety Investigations Body.
Dr Johnson
Q
Dr Benneyworth: We are a safety investigator. We have been modelled on other industries that have very successful safety records, and we have learned from those other industries. We investigate patient safety concerns of national significance, and we make recommendations into national bodies about what needs to be improved. We make very few recommendations—only small numbers—into those national bodies, but they are about what needs to change from a systemic point of view to make patient care better. That is underpinned by learning from other industries—the safety science, the human factors and the real knowledge about how you improve safety—and we are trying to embed that in the NHS.
Regulation is very different. That looks at individual providers. I used to the work for the CQC and regulate primary care. It looks at how individual providers are functioning. It makes recommendations to individual providers about what needs to change, and it judges an individual’s performance against a set of regulations. The two functions are completely different.
The other important thing for us is that we do not attribute any blame or liability in our investigations. That is vital, because we learn from what we see. We learn from those investigations, and we are trying to embed a continuous learning environment and culture within the system.
Dr Johnson
Q
Dr Benneyworth: I think it will be very difficult. At the moment, we have the ability, being an independent organisation, to investigate any part of the system where there is a concern. That includes the national system. In several of our investigations we have looked at how the national system, the regulatory system and NHS England are working, and how other parts of the system are working. We are unique in that, because a lot of those bodies do not get the scrutiny from any other part of the system, and they do not get that oversight and ability to look and understand how the national system works together.
If we were a directorate in the CQC, as outlined in the legislation, it would be very difficult for us to comment on how the CQC was looking at different areas and how it was managing certain aspects of safety. I think there is also concern about our ability to make effective recommendations to the CQC if we are a directorate within it.
Dr Johnson
Q
Dr Benneyworth: That would be unusual. We have undertaken one very detailed set of investigations into mental health in-patients, which was directed by a previous Secretary of State. We would very much want to hear the patient safety concerns of the Secretary of State to understand what we investigate. We work extensively with stakeholders across the system. We want to be a constructive part of the system. We want to investigate the areas that people are concerned about. We work extensively with all stakeholders to hear their patient safety concerns and make sure that our investigations are informed by that knowledge and by what we are hearing from patients and families, as well as staff working in the system.
However, we need to make sure that we have the independence to investigate what we are hearing about. It is very important that we are not stopped investigating something, and it would be concerning if someone told us not to investigate something. We need to maintain that independence.
Dr Johnson
Q
Dr Benneyworth: There is no doubt that it helps to improve safety. That is something we have learned from 100 years of the air accidents investigation branch, which has had an immense impact on aviation safety, the rail accident investigation branch, and many others. Safe space, or protected disclosures, means that people can talk freely to us about things that have gone wrong without fear of sanctions, being told off by their line manager or losing their jobs.
We hear all the time about people who have ended up losing their jobs or getting into trouble because they have raised concerns. We see in our investigations that we are still working in a culture of fear. In an ideal world, that would not be the case and people would feel able to speak up openly about what has gone wrong, but we are working in a culture where people are not in that place.
This enables staff working in the service and patients to talk to us freely about what they see on a daily basis that they think needs to change. Patients sometimes worry that they will be treated differently and not get the same care after they raise things. This enables patients to talk to us in the knowledge that they will not be named. The patients we work with who have been harmed from healthcare tell us, “We don’t want this happening to other families. We’ve been through this awful, terrible time, and we want to change the system.” This enables them to talk to us.
We do not name individuals in our reports and do not name organisations. We are now in a stage where we are growing that trust. We are coming up to being three years old as an organisation, and we are growing that trust with the system. When we launch an investigation, organisations right across the country say, “Please come and see what’s happening here. Please come and talk to us.” I worry that that might be impacted by the changes ahead.
Karin Smyth
Q
Dr Benneyworth: The two key things have been touched on already. The first is the independence to choose what we investigate and make recommendations to any part of the system. The second area is around protected disclosure. The legislation needs to be much clearer around the protection of protected disclosure materials, to give the system confidence in our ability to hold and not share confidential information.
At the moment, the legislation talks about connected individuals having access to the protected materials. The clauses outlining connected individuals mean that anyone working in the CQC could potentially have access to protected materials. That is a very large number of people, and it will create risk. There needs to be a legal duty on the CQC to protect the safe space. There is also something about maintaining an identity that gives people confidence that when they are talking to us, their information will not automatically go into the CQC regulatory functions.
Some of that may be about perception rather than the reality of what is happening, but as we know, perception is very important. People will perceive that we are part of the regulatory system even if we have the same email address, for example.
The Chair
We shall now hear oral evidence from Sir Jeremy Hunt MP. Again, we must stick to the timings and we have to finish at 11.25, so we have got just 15 minutes to put our colleague through the mincer. For the benefit of the record, would you like to identify yourself?
Sir Jeremy Hunt: Jeremy Hunt, former Health Secretary.
Dr Johnson
Q
Sir Jeremy Hunt: As the Committee knows, the principle of HSSIB was modelled on the airline industry, where the air accidents investigation branch has a superb track record of identifying safety breaches. There is a very good rail accident investigation branch that does the same for the railway industry, to make sure lessons are learned. My concern was that the NHS and actually health systems across the world are not very good at learning lessons when there are tragedies.
The heart of what the AAIB has is this concept of safe space, where people can talk to it completely without fear that what they say will get passed on or used against them in a court of law, and so they are very open about what may have gone wrong, allowing a rapid conclusion to be drawn. So that was the principle behind it.
I am against the transfer of HSSIB to the CQC for two reasons. First, I am worried that it will undermine that safe space principle. I think the safe space principle is the bit of HSSIB that is working very well and I am worried this will undermine that. Secondly, the Bill does not do anything to address the bit that is not working well, and that bit is that the NHS is still very poor on acting on recommendations that are made, and by the way not just by HSSIB but by public inquiries, prevention of future death notices, by maternity and newborn safety investigations reports.
We are the world champion at doing inquiries and reports. Unfortunately we are also the world champion at allowing those reports to gather dust without anything actually happening. What I would really like the Bill to do is something, whether through the National Quality Board or whatever, so that the public know that when HSSIB or MNSI or a Select Committee or a public inquiry makes a recommendation, the Government have to make a formal decision within a limited time period—“yes we are going to do this” or “no we are not”; no sitting on the fence about “this is under review and we will consider it, come back to it”, but a positive or a negative decision—and then if it is a positive decision, a timeline by when it will be implemented. That is not a party-political point, because this is a problem that was not fixed when I was Health Secretary and it has remained outstanding for many years. Families just put their heads in their hands in despair that they get these inquiries, get these recommendations, and nothing changes.
Dr Johnson
Q
Sir Jeremy Hunt: What HSSIB has done is positive but it is still trying to solve a bureaucratic problem with more bureaucracy. What there needs to be is a formal system with a legal obligation on the Government. I felt this when I was chair of the Select Committee as well—that Governments would kick recommendations that were awkward, usually things that cost money that they did not want to spend money on, into the long grass without actually saying whether they agreed or disagreed with them. There is a terrible phrase that is often used: “agree in principle”. I may have been the one who invented it, but it is really bad for accountability because it allows the Government to say, “Yes, we really understand where you are coming from, but we are not going to put any timeline or give you any commitment as to whether we are actually going to make the change”. I think we need a proper system—and if it is the National Quality Board, that would probably be a good place—for formally assessing all public inquiry recommendations, all Select Committee recommendations and HSSIB recommendations, and saying, “Yes, we’re going to do this” or “No, we’re not”, but if it is yes, it will happen by this date with this person being responsible.
Secondary Breast Cancer
Caroline Johnson Excerpts(3 weeks, 5 days ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
It is a pleasure to serve under your chairmanship, Mr Betts.
I congratulate the hon. Members for Wokingham (Clive Jones) and for City of Durham (Mary Kelly Foy) on securing this debate, which I know is extremely personal to both of them. I also congratulate the hon. Member for West Lancashire (Ashley Dalton) on her speech. It is quite common in this place for people to say that an hon. Lady or hon. Gentleman has given an extremely powerful speech, but that was an extremely powerful speech. I was moved by it, and I am in great admiration of her courage and the frankness with which she speaks in this House about her illness. I was fortunate enough to be at a roundtable earlier in the week with the New Statesman about the cancer plan, with the hon. Member for Wokingham and others. I found it very insightful and thought-provoking, like the contributions we have heard in the Chamber today.
As has been said, for many people, primary breast cancer never comes back after treatment, and treatment for primary breast cancer has significantly improved. But sometimes the cancer cells spread to other parts of the body—commonly the bones, lungs, liver, brain or skin—which is called secondary or metastatic breast cancer. As we have heard, the best estimate we have is that there are around 61,000 people living with secondary breast cancer in the United Kingdom, but that statistic is uncertain and the data is unclear. One point in the cancer plan was that the Government would collect the data on secondary breast cancer from 2026. We are almost halfway through 2026, so I would be grateful if the Minister could provide an update on how that is going and when we will see that data. Also, how frequently does she expect it to be published—will it be published monthly, quarterly, every half year or every year? What are her plans for that? There needs to be definition in order to do that, so I wonder if she has settled on that too.
Another point in the cancer plan is the desire to improve screening. Again, I commend the hon. Member for West Lancashire on her work on the cancer plan, but there are women in Lincolnshire waiting five weeks and more for referral to their appointment when they discover a breast lump, and we know that the longer it takes for diagnosis, the more likely metastasis is to occur. Could the Minister give more detail on the promise to expand screening? What does it look like? What workforce will be necessary and when will that be in place? What mammography machines or ultrasound machines might be needed? Are they to be bought and installed, and how quickly does she expect that to happen? For those who need genetic testing, what plans does she have to expand the availability of genetic testing, and what will the timescale be?
The cancer plan, which I am glad is very ambitious—it should be—will work only if it is delivered. It was published just over four months ago, but it is not clear what progress is being made or that the work is continuing at the necessary pace to deliver the ambitions we all want to see achieved. One thing slowing progress is the reorganisation of integrated care boards in response to the cutting of their budgets by 50%, and the Health Bill’s abolition of NHS England. The people who would be organising and planning are organising and planning something else. Some of them are leaving, so we are losing expertise, while others are being made redundant—or leaving before they are made redundant. That is disrupting the planning of our health services. Will the Minister comment on that?
As has been said, there has not been the same progress for treatment of lobular breast cancer as for other forms of breast cancer. The previous Conservative Government committed £20 million to the Moon Shot project, to research ways of advancing treatment of that particular form of cancer, which needs more attention than it has had of late. Will the Minister tell us whether this Government are committed to providing that money for that research?
Hospices provide amazing services for people towards the end of their lives, but, as we have heard in other debates in this Chamber, they are struggling. They have a lot of staff because theirs is a very person-delivered service, and they accrue extra national insurance costs from employing all those members of staff. I appreciate that the Government have put a lot of money into hospices, but that is capital money to enable them to redecorate, build extra bits, provide extra equipment. That is lovely, but it does not help if there are no staff to run the service and provide the care that the patients so desperately need. What discussions has the Minister had about the effects of national insurance contributions on hospices? Has she considered an exemption? What are her plans to help to support the hospice movement?
The hon. Member for West Lancashire referred to what happens when a patient has run out of options. As a doctor, I am always told that a doctor never runs out of treatments. Palliative treatment is treatment, so even when they run out of treatments, they are still providing a treatment. However, what happens when we run out of treatment that is active or likely to be successful in prolonging life or curing disease? It is important that research is supported and able to continue. I look forward to the Minister’s words on what the Government are doing to support research so that new drugs can come online. During the pandemic, we saw how quickly vaccines were brought through the pathway. What is gumming things up now? How do we speed it up so that people can get the necessary drugs more quickly?
What happens in the grey zone, when a drug is going into trial and is sort of but not quite available yet? We have compassionate use schemes, about which I asked an urgent question in the main Chamber this morning. Such schemes are used when individuals have reached the end of the treatment options and perhaps do not qualify for any of the trials that are currently available—in paediatrics, that could mean that they are a few days out of the age bracket—or perhaps the trials are full. Those schemes are also used when a patient received the drug in a trial, but the trial is finished and negotiations about the drug are ongoing. In some cases, the drug companies will provide those drugs to patients for free to help them.
Unfortunately, towards the end of last year, the Government decided to charge VAT on the deemed value of such drugs. That means the companies have to pay sometimes quite significant charges to give those drugs to patients. One large pharmaceutical company has pulled out of the compassionate use scheme, which means that its drugs are not available for the people who need them—that issue was raised by my hon. Friend Member for Hornchurch and Upminster (Julia Lopez). The enforcement of that tax by His Majesty’s Revenue and Customs has been paused for review, but the liabilities remain.
We therefore have a situation in which some drug companies are pulling out and others are considering their position. People with secondary breast cancer, and those with other cancers and serious illnesses, cannot wait for the autumn Budget. They need the Government to make a decision to sort this problem out now. Only last month, the Government decided that they would take VAT off rides at Alton Towers. That is great, but if they can do that, they can sort this issue out as well, and they need to get on with it. Will the Minister raise the matter with her colleagues in the Department of Health and Social Care and in the Treasury to see what she can do to help people who have no option other than these new and special drugs to keep their hope alive?
In summary, the cancer plan is ambitious, which is great—it has some great targets that I hope can be achieved—but we need to see delivery. I am looking to the Minister for the detail on how the plan will be delivered.
Compassionate Use Medicine Schemes: VAT
Caroline Johnson Excerpts(3 weeks, 5 days ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
(Urgent Question): To ask the Secretary of State for Health and Social Care if he will make a statement on the effect of VAT on the availability of medicines through compassionate use schemes.
The Minister for Secondary Care (Karin Smyth)
It is very important for patients to have access to innovative medicines as quickly as possible, especially where there is unmet clinical need or no alternative treatment. We are working to streamline the decisions of the National Institute for Health and Care Excellence and the Medicines and Healthcare products Regulatory Agency so that NHS patients benefit from the latest medicines as soon as they are proven to be safe and effective.
Early access and compassionate use programmes can play an important role in enabling patient access to medicines ahead of routine commissioning decisions. However, we should be clear that these programmes are commercial decisions taken by pharmaceutical companies: companies choose whether and how to provide medicines free of charge to patients and the NHS before the medicines go through licensing, post-trial access or a funding decision.
The tax system is, as Members know, a matter for the Chancellor, so I will not get into details about that at the Dispatch Box, but under long-standing VAT rules, supplies of goods free of charge can still be treated as taxable “deemed supplies” where input tax has been recovered. That means that VAT can apply even where no payment is made, reflecting established principles of the tax system. We recognise the concerns raised by industry and others about the potential impact of this treatment on the provision of free-of-charge medicines. We are working closely with the Treasury and His Majesty’s Revenue and Customs to explore options to address these issues, as witnessed by my hon. Friend the Exchequer Secretary to the Treasury, who is here with me on the Front Bench. We will carefully consider the legal, fiscal and operational implications of any potential changes. Until then, we will continue to engage constructively with industry, the NHS and all our partners to make sure that British patients, who we have in our thoughts at all times, have access to innovative medicines.
Dr Johnson
I declare an interest as a consultant paediatrician. One of the worst moments as a paediatrician is when all treatments have failed and there is no suitable clinical trial. At that point, in those dark moments, compassionate use schemes can be a glimmer of hope, and new unlicensed medicines with clinical potential have been provided free to the patient, and free to the NHS. Last year, however, the Government started charging VAT on the deemed value of those drugs, meaning that companies had to pay tax to give the drugs away. When hearing that “every meeting” with Labour MPs was about
“who can we tax in order to pay benefits to others?”
few would have imagined that that would include potentially lifesaving, charitably given drugs for sick adults and dying children.
Following lobbying by my hon. Friend the Member for Hornchurch and Upminster (Julia Lopez), the Government have paused enforcement while they review the situation, but they have said that liabilities remain, and they are taking too long. Bayer has now withdrawn from the scheme, and others could follow. Patients are at risk. Does the Minister recognise that that makes trials in the UK less attractive, and that HMRC’s pause is not enough? How much money do the Government expect to raise with this VAT? How did the Government find time to reduce VAT on fairground rides at Alton Towers, but not to sort out this problem? How many patients have missed out so far? Does the Minister recognise that this delay could cost lives, and who was the Minister who signed this off? Was it the Health Secretary when he was a Minister in the Treasury?
I understand that the Government say this situation is not new, and that it may apply to a law dating back over 30 years. I gently point out, however, that the application is new, and that the levers to change it—and change it quickly—lie in this Government’s hands. Patients need them to act swiftly.
Karin Smyth
I pay tribute to the hon. Lady’s service as a clinician, and she is right to say that, at times, for patients facing such situations, compassionate use schemes are a glimmer of hope, but I think the rest of her comments were ill deserved. I understand the desire of the Opposition to attack a new Secretary of State because he was in the Treasury, but I will move on to the actual issues, because patients care about this. The rules had been in place for a long time when this Government took office, and we have not changed them. We have inherited this system, and we are looking at how we can improve it.
The previous Government could have abolished VAT on such medicines, but they chose not to do so. What is more, since we have been in office, we have struck a deal with the USA that not only guarantees 0% on pharmaceutical tariffs, but changes the old formula that we use for medicines. For the first time in 20 years, the Government are spending more to ensure that our patients are first in the queue for innovative medicines. The previous Government could also have raised the threshold, but they chose not to do so. Now, for example, patients facing Duchenne muscular dystrophy, children as young as 12 who need a brain cancer drug, or those who have a type of rare and aggressive stomach cancer, are being treated.
We recognise the importance of the UK remaining a leading location for life sciences, investment and innovation. That is precisely why we are engaging with industry and partners across the Government to understand and address concerns, including the issue of VAT payable on donated medicines. In considering a way forward, it is important to safeguard the robust and fair system by which routine access to medicines commissioned by the NHS is determined. A range of options are being considered. No decisions have been made at this stage, and I will not pre-empt any.
Draft Food Supplements Purity Criteria (Magnesium L-threonate monohydrate) (England) Regulations 2026
Caroline Johnson Excerpts(3 weeks, 6 days ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
I just have a couple of questions. I have read about magnesium L-threonate: it is supposed to promote relaxation, unlock true cognitive potential, improve sleep, mood and overall wellbeing, and enhance mental clarity, memory and focus, so I was thinking I might get some of that. However, if I were to recommend it as a supplement, there are a couple of things I would need to know. What would the dosing be? Can the Minister confirm whether the plan is to set the dosing of magnesium in line with other types of magnesium supplements and in line with the EU, or has that not been decided? Will that be decided on a different day?
My other question is how, when we look at supplements, we can be sure they contain what it says on the tin. The Food Standards Agency regulates that, but how many reports has it had of concerns about the content of supplements, and how many products does it test? I looked at its retail survey for 2025, which found that 83% of caffeine supplements failed because they had the wrong amount of caffeine, there were allergens not described on the labels, or they contained substances that should not have been there. How often should we expect the supplements to be tested? What sort of programmes are in place to ensure that the huge variety of supplements that people can choose from in shops these days are safe and that they contain what they say they do? Other than that, I am happy with the regulations.
Oral Answers to Questions
Caroline Johnson Excerpts(4 weeks ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
Does the Secretary of State agree that state-funded healthcare should be provided to all children based on clinical need, not economic or educational status?
James Murray
It is an essential part of our NHS and its founding principles that the NHS is available to all on the basis of need, not their ability to pay. That is a fundamental principle that we in the Labour party support. I know that some Opposition parties have been moving away from that recently and seeking to privatise the provision of our health service and move to an insurance-based model, but Labour Members believe that all people, including children, must get healthcare based on their need rather than their ability to pay.
Dr Caroline Johnson
I thank the Secretary of State for his answer. Does he therefore share my concern at reports that some children are being turned away from state-funded healthcare because they are not attending a state school? Will he look into those reports and ensure that he makes provision for children who are not attending state schools to receive the healthcare they need?
James Murray
I am surprised by the hon. Lady’s remarks, because where a child goes to school should have no bearing on their ability to access NHS services. If she would like to write to me with further details, I would be happy to look into that matter.
Health Bill
Caroline Johnson ExcerptsMonday 1st June 2026
(1 month ago)
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Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
Before I start, I must declare an interest as an NHS consultant paediatrician, a member of the British Medical Association and a member of the Royal College of Paediatrics and Child Health, as well as someone who has been moved to the back of a waiting list, after asking for a consultant review for the third time, and finding that I still do need it but it will have to wait a bit longer.
Churchill once said:
“Healthy citizens are the greatest asset any country can have”.
Good health is perhaps the most important asset that any individual can have, and I am sure that across the House, we all want the very best healthcare and the most efficient NHS for our constituents. As such, I am confident that this Bill has been brought before the House with the very best of intentions, but does it achieve its goals?
In general, organisational restructure involves some sort of assessment of where we are now, followed by a vision of what the future should look like, and then a focus on how to get smoothly from A to B. The Government started with a review of the current system. They called it the “Independent investigation of the NHS in England”, although the House should note that it was independently conducted by a former Labour Minister. In his report, Lord Darzi said that
“a top-down reorganisation of NHS England and Integrated Care Boards is neither necessary nor desirable”.
The then Secretary of State, the right hon. Member for Ilford North (Wes Streeting), seemed to agree. In September 2024, he was reported as saying that a top-down reorganisation was the “last thing” he wanted to do. Within six months, he seemingly changed his mind, which he is allowed to do, but it is regrettable that, having begun the last thing he wanted to do, such little progress has been made on his promised first acts, such as the roll-out of fracture liaison services. So many other promises are delayed, undelivered or, in the case of the promise to double the number of medical school places, somewhat bizarrely denied.
Another of the Government’s stated objectives is improving the patient experience. At the moment, we have Healthwatch—an independent organisation that listens to patients and provides feedback. More than 300,000 people a year share their experiences with their local Healthwatch to improve services, and that feedback has led to positive change. The Government cited Healthwatch data in their King’s Speech publication. Against the backdrop of rising clinical negligence claims, concerns about maternity care and even reports of abuse in hospitals, it is clear that more must be done to listen to patients and address the problems, but this Bill abolishes Healthwatch England and effectively ends local Healthwatch organisations. The Government plan to replace it with a patient experience directorate within the Department of Health and Social Care. As Councillor Dr Wendy Taylor of the Local Government Association has warned that this
“risks organisations being seen to mark their own homework.”
There is another concern. Facts are stubborn, but statistics can be pliable. How can the public ensure that they are getting reality and not spin from the Government? Ministers keep celebrating falling waiting lists, when in fact patients are being removed from the list without treatment because their appointments have been cancelled, because they missed an appointment they were not told about, because they have not filled in a form, or because they were called several times asking if they still needed an elective operation and agreed to see a consultant to check.
My hon. Friend the Member for Harwich and North Essex (Sir Bernard Jenkin) made a passionate speech about the importance of HSSIB. This Bill seeks to abolish the Health Services Safety Investigations Body. It provides a safe space, modelled on air accident investigations. Through the avoidance of blame and liability, it can get to the truth and prevent future tragedies. The Bill abolishes HSSIB apparently to simplify the patient safety landscape and reduce the number of organisations. In response to criticism, the Government have attempted to provide reassurance by saying that HSSIB will retain autonomy within the CQC, but the Government cannot have it both ways. Is HSSIB being abolished, or is it being hidden within the CQC?
Either way, the new unit within the CQC will face a number of challenges, such as the undermining of confidence in safe spaces, because it will be within a regulatory body. Its independence will be undermined, because Ministers have now signalled their intent to direct the vast majority of investigations and because the national quality board will prioritise any recommendations that they make. We will also have a CQC board without full oversight of what it is accountable for and, somewhat bizarrely, a risk that if the regulatory part of the CQC wants information from the safe space, and the other part of the CQC does not want to publish it, we could see the CQC suing itself. We have all this upheaval to have one less—or at least the illusion of one less—organisation. How on earth does that improve patient safety?
As many have said, including my hon. Friends the Members for Runnymede and Weybridge (Dr Spencer) and for South Northamptonshire (Sarah Bool), the single patient record is a good idea in principle. Patient information is currently fragmented across different parts of the healthcare system, and bringing it together could save lives, save time and improve prevention. However, the introduction of such a system must be well executed.
First, there are practicality concerns. Do patients want their full medical records, including sensitive conditions and perhaps including sexual health records, visible to every health professional? The hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) talked about the difference between a single patient record that is all of the same type and one that is part of a federated platform. The Secretary of State talked about linking up people’s ability to see the current system, but there is huge variety in systems. Even within one hospital, there might be a different system for maternity, A&E, blood results, historical notes and current clinic appointments. Will NHS staff be required to learn all those systems for all over the country, or will data be transferred to a new system? Either move has its downsides, but I am not clear which the Government intend to do.
Secondly, there are security concerns. As has been said, the NHS has the most valuable health dataset in the world. The Government must provide clarity in relation to who controls the data, who is responsible for maintaining its accuracy, and how it will be kept securely. Hackers are already trying to gain access to it, knowing that even if it is encrypted, quantum computing will be able to unpick encryption in the years to come. The Government must ensure that they are quantum-ready. What role is the National Cyber Security Centre playing in this regard?
Life, in all things, is a balance. If arm’s length bodies are in control of things for which Ministers are nominally responsible, we have a democratic deficit, and it is understandable that the Government want to recoup that, but, as we heard from my hon. Friend the Member for Meriden and Solihull East (Saqib Bhatti), the powers in the Bill for them to take control of everything risk the creation of a politicised service in which those who shout the loudest get preferential treatment. Those with very rare conditions such as corticobasal degeneration, Wiskott-Aldrich syndrome, Lafora body disease, Friedrich’s ataxia and many more such conditions may not have as well-funded or celebrity lobby groups acting on their behalf as those with other conditions. How will the Secretary of State ensure that clinical need drives the provision of services, rather than the resources of lobby groups or access to Ministers or, indeed, the Secretary of State?
As the NHS is undergoing a massive reorganisation, I am mindful of what the Minister once said:
“The reorganisation of health services always distracts from people’s jobs, destroys morale and wastes money”.—[Official Report, 22 September 2022; Vol. 680, c. 809.]
It also stalls progress and takes a lot of staff time, which may be why we have a 10-year health plan that took a year to write, why the workforce plan has still not been produced, why the so-called “rapid” national maternity investigation has not been completed, why waiting lists are up for patients referred for admission in several specialities, why we have a glacially slow roll-out of fracture liaison services, why the mechanical thrombectomy service promised for stroke victims by April is not available, why there is no response to the Hughes report, why there is a denial of the promise of an increase in the number of medical school places, and why doctors have announced their 16th strike, costing millions of pounds in appointments. The Government promised results, but all they have delivered is disruption, delay and disappointment.
I feel for the current Health Secretary. His predecessor was more focused on unseating the Prime Minister, and he is left to pick up the pieces. However, despite our political differences, I do have hope. Previously, he insisted that trans women were women, but I understand that he has now changed his mind. He has listened, and he has accepted that biological women are distinct and require single-sex spaces, in line with the law, biology, and common sense. I am therefore hopeful that the new Health Secretary will also listen to concerns about the Bill, and that we can work together in Committee to improve it. As I said at the beginning, we all want the best possible health service for our constituents.
Health and Social Care
Caroline Johnson Excerpts(2 months, 1 week ago)
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Dr Caroline Johnson
The Minister talked about less-than-full-time training, which has obviously had an impact on the number of doctors we need. The Secretary of State said before the general election that if Labour was elected, it would double the number of medical school places. Is that still the Government’s intention?
Stephen Kinnock
Yes, that is the Government’s intention. Obviously, we have had some challenges in April around our hope that we could create 1,000 additional places. We have not been able to do that, unfortunately, because of the reckless decision of the BMA to go back out on strike. The absorption of huge capacity, as well as operational issues, has meant that we have not been able to do that.
[Official Report, 22 April 2026; Vol. 784, c. 133WH.]
Written correction submitted by the Minister for Care, the hon. Member for Aberafan Maesteg (Stephen Kinnock):
Stephen Kinnock
This Government have never committed to doubling medical school places. Obviously, we have had some challenges in April around our hope that we could create 1,000 additional places. We have not been able to do that, unfortunately, because of the reckless decision of the BMA to go back out on strike. The absorption of huge capacity, as well as operational issues, has meant that we have not been able to do that.
Dr Johnson
I thank the Minister for that answer, but I believe that it relates to postgraduate training places. I was asking whether it is still the intention to double the number of medical school places?
Stephen Kinnock
Sorry; I misunderstood the question. Yes, it is still our intention to double the number of medical school places.
[Official Report, 22 April 2026; Vol. 784, c. 134WH.]
Written correction submitted by the Minister for Care, the hon. Member for Aberafan Maesteg (Stephen Kinnock):