Joe Robertson
MP for Isle of Wight East · Conservative · United Kingdom
“(3) In preparation of the report under subsection (1), the Secretary of State may have regard to any such measures or information that they consider appropriate, including— (a) an assessment of any variation in dementia services and outcomes between integrated care board areas, (b) information on workforce capacity, capability and trainin…”
“The clause fits into that and would require the collection of data on the provision of dementia services in health and social care. I do not propose to speak too long, but I do want to make a couple of remarks on the current situation, which sets these new clauses in context.”
“That will, of course, impact many more friends, families and carers who support those living with dementia. More than a third of people living with dementia in England do not have a formal diagnosis. Those who do receive a diagnosis live with the condition for an average of three and a half years before that diagnosis.”
“The data requested is imperative to ensuring that the Government can measure and monitor progress against relevant national targets, standards and guidance, including the new modern service framework on dementia, the forthcoming Care Quality Commission statutory guidance and outcome measures that may be set in future NHS operational plann…”
“I thank the Minister for pausing the MCA’s brutal decision about coastguard rescue officers, and for convening meetings on cross-Solent ferry transport to the Isle of Wight, which will start next month.”
“It is a pleasure to serve with you in the Chair, Ms Lewell. These two new clauses, the latter of which is in my name, deal with the publication of an annual report detailing NHS and social care provision for dementia care and how the Government are performing against targets, standards and outcome measures set out in national guidance and…”
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“Dementia puts immense pressure on our healthcare system: one in six hospital beds is occupied by someone living with the condition. Lord Darzi’s investigation into NHS performance highlighted how “there is an important challenge to improve both the quality and quantity of care for people with dementia.” The new clauses would go some way to addressing that, and I urge the Government to support them.”
“That will, of course, impact many more friends, families and carers who support those living with dementia. More than a third of people living with dementia in England do not have a formal diagnosis. Those who do receive a diagnosis live with the condition for an average of three and a half years before that diagnosis. Post-diagnostic care and support is often fragmented, leaving people affected by dementia without a clear point of contact, co-ordinated care, or access to specialist support for those with complex needs. Recent findings show that only 14% of people with dementia have an advanced care plan in place. That is not good enough for a disease that affects so many people and is the leading cause of death in England.”
“The clause fits into that and would require the collection of data on the provision of dementia services in health and social care. I do not propose to speak too long, but I do want to make a couple of remarks on the current situation, which sets these new clauses in context. Dementia data is not currently comprehensively or consistently collected, analysed and published. That means that we cannot fully understand the provision of NHS care or social care for dementia, which is the biggest cause of death in the UK; how national targets, guidance or frameworks are being met; and where inequalities and challenges lie. As well as being the leading cause of death, dementia is a disease that around 1 million people live with. That number is expected to rise to 1.4 million by 2040.”
“The data requested is imperative to ensuring that the Government can measure and monitor progress against relevant national targets, standards and guidance, including the new modern service framework on dementia, the forthcoming Care Quality Commission statutory guidance and outcome measures that may be set in future NHS operational planning guidance. That is crucial to improving transparency and accountability, allowing systems to see the full picture of dementia provision in England and highlighting challenge areas or inequalities. The Bill makes provision for the establishment of information systems to collect, analyse and publish health and care data that is in the interest of the health service in England.”
“It is a pleasure to serve with you in the Chair, Ms Lewell. These two new clauses, the latter of which is in my name, deal with the publication of an annual report detailing NHS and social care provision for dementia care and how the Government are performing against targets, standards and outcome measures set out in national guidance and frameworks relating to dementia services. I would like to thank three important charities working in this area: the Alzheimer’s Society, Alzheimer’s Research UK and Dementia UK. All three back the two new clauses.”
“(4) The Secretary of State must publish the first such report under subsection (1) within 12 months of the passage of this Act.”— (Joe Robertson.) This new clause would require the Secretary of State to produce an annual report on the delivery of dementia care by the NHS and social care sectors against relevant national targets, standards and outcome measures. Brought up, and read the First time. Question put, That the clause be read a Second time.”
“(3) In preparation of the report under subsection (1), the Secretary of State may have regard to any such measures or information that they consider appropriate, including— (a) an assessment of any variation in dementia services and outcomes between integrated care board areas, (b) information on workforce capacity, capability and training standards relevant to dementia care, (c) information on access to ongoing post-diagnostic support services, including support for unpaid carers, (d) information on continuity and coordination of care for people living with dementia, including access to a named professional responsible for coordinating support across services, (e) outcomes and experiences for people living with dementia and unpaid carers, including crisis prevention, carer wellbeing, and experiences of joined-up care, (f) progress on dementia prevention and risk reduction, and (g) dementia research activity in the NHS.”
“I beg to ask leave to withdraw the clause. Clause, by leave, withdrawn . New Clause 97 Publication of annual dementia care report “(1) The Secretary of State must publish annually and lay before Parliament a report on— (a) the provision of NHS care in relation to dementia, and (b) provision of social care in relation to dementia. (2) In preparation of the report under subsection (1), the Secretary of State must have regard to targets, standards and outcome measures set out in national plans, guidance and frameworks relating to dementia services.”
“I thank the Minister for pausing the MCA’s brutal decision about coastguard rescue officers, and for convening meetings on cross-Solent ferry transport to the Isle of Wight, which will start next month. It is of some concern, however, that I have received a letter—not from him—telling me certain things that I was not allowed to discuss, including evidence of ticketing and reliability going back more than 10 years. I am sure he understands that the world did not start in 2016, and I will not be told by anyone how to best represent my constituents, or what I can or cannot say.”
“I congratulate the hon. Member, my neighbour, on securing this debate, which is important not only for us on the Isle of Wight, but for so many MPs, hence the wonderful turnout in the Chamber today. In particular, I thank him for highlighting our issues with ferries. I am sure he would agree that it is not just the price we all pay to get back and forth, but the whole impact on our local economy. That is a message we really need to get across, and use the opportunity of a new Prime Minister to do so.”
“It could be used to drive so much innovative research and development, for the benefit of health delivery not only in this country, but across the world. Such a valuable commodity has commercial value that could deliver financial benefit to the NHS. I think we all agree that we have not yet exploited that area to the fullest. There is an opportunity to do so with the single patient record—if it is done properly, with all the necessary safeguards.”
“How do we balance that with people’s right to privacy? Again, there is the possibility of inadvertently using for a wider public good data that was intended to be anonymised but in which people can be identified. The charter tries to get to the heart of that issue as well, which I welcome. Indeed, new clause 6(4)(a) states that the sovereign health data trust will “hold continuous oversight of all health data and oversee the trusted research environment”. The Minister may not agree with the new clause, but how will the Government’s proposals balance the security of an individual’s personal data while exploiting, for the public good, the value of the huge depth of anonymised data that the NHS holds and will hold?”
“If the Minister does not support the new clause, will she explain how its aim of protecting people’s privacy will be delivered by the Bill? There seems to be great scope for the undermining and abuse of privacy, not just deliberately by bad faith actors, but inadvertently. A second issue aim of the charter is the balance between the security of personal data and the recognition of the value of anonymised data gathered by the NHS for research and development. Fully anonymised data that cannot be unpicked through reverse engineering is of huge value, both commercially and for the public good. Commercial value and the public good are not necessarily opposed to each other; in fact, they often come together. The NHS should be able to exploit the value of that anonymised data—“exploit” is probably seen as a negative word—for the public good.”
“It is also much easier for wider access to be shared accidentally, because the whole system is lubricated by the single patient record. I therefore understand the reason for the health data charter as a cure for potential ills. New clause 6(3)(b) states that the charter must “include the primary goal of protecting people’s privacy and their data from exploitation”. That is a fantastic goal that we all support, but I do not necessarily agree that the measure will achieve that. It is an added layer of bureaucracy. My hon. Friend the Member for Farnham and Bordon asked a rhetorical question about the bureaucracy and effectiveness. I endorse that question and hope that the hon. Member for North Shropshire will answer it. I am minded not to support the proposal, though I agree with what it tries to achieve.”
“New clause 6 seeks to address another significant issue with the single patient record: security and the control of data. The single patient record, if fully realised, will make it easier for data to be accessed and shared. Its very purpose is to ensure that systems and services are more integrated and data flows more freely, to avoid the ridiculous situations in which a GP fills out a patient note but cannot share it with a secondary care provider, so must print it out for the patient, or attach a PDF to an email, so that somebody at the other end can input it to their database. One issue with making it easier to share data—including personal data of the most intimate kind—is that once it has been accessed by bad-faith operators, it is easier for them to run riot and cause an awful lot of damage.”
“I am not necessarily suggesting that it should, but I do not see the Government acknowledging anywhere that systems are contracted and provided by private providers through procurement processes at a local level, and asking, “How do we knit that all together?” It seems that somebody somewhere will have to produce some gateway software or system to allow the single patient record to be accessed. If every other existing system needs to be able to feed into that, the public sector will have a huge role, and the private sector will sit behind it to try to deliver that. It seems a huge project that could be fraught with difficulty, it could take many years before the single patient record is established, regardless of when the Bill is passed—although I am sure it will be passed fairly soon.”
“It seems that the advantages will be realised only if those systems are able to speak together and are fully interoperable. I know from a previous time in my career that, in reality, many such systems are not interoperable or are only part-interoperable, and that, even where they do speak to one another, the data is collected and recorded in different ways. Simple things—someone’s name, their age or the principal field of the issue for which they are presenting to a clinician—are recorded, but because the systems are not standardised, that data cannot be transferred between them easily. The advantages of the single patient record will be realised only when all those systems are unified in some form, but the Bill does not address that directly.”
“It is a pleasure to serve with you in the Chair, Dr Huq. My hon. Friend the Member for Farnham and Bordon has set out the arguments clearly; I will just add some of my own views. As he stated, the single patient record provides a unique and special opportunity to improve efficiency across the whole health and social care space and to empower patients, but it faces significant challenges. As I said in an earlier sitting, perhaps one of the biggest challenges is ensuring that it means something in practice. In a previous debate, the Minister helpfully clarified that the data currently held on a great variety of databases and electronic record-keeping systems in the NHS will remain on those wide and disparate recording systems.”
“Does my hon. Friend agree that there is an overarching issue here of public confidence in the safety of their data? That is not about one company or another; it is about ensuring that robust safeguards are in place for everyone and for every provider of a data and record-keeping system. If the public do not have confidence, they will understandably withdraw consent for their data being held. That will undermine the single patient record and the whole way in which health can be delivered efficiently in the best interests of patients.”
“I am grateful to my hon. Friend for giving me an opportunity not to chunter from a sedentary position and to remark that this tedious rhetoric about the last 14 years—when all the public want to do is hear about plans for the future and how they will work—is the reason why we are in the state that we are. Will my hon. Friend continue and address the points that the public want, which he had already begun to do?”
“There are other things that I would hope all Ministers have an eye on in everything they do, such as the wealth of the nation and inequality, but I would not advocate for embedding those things—I hope they would come with good governance, public duty and responsibility—in legislation as a duty, a committee, a set of meetings and a report. Indeed, it is things done with good intentions that lead to growing bureaucracy, which slows down decision making and requires more people to be employed to discharge those duties at a growing cost to the public purse. It is something that western democracies do all too well, and not always for the good. I would not want this well-intended set of new clauses to lead to growing bureaucracy with very little benefit. The benefit that the hon.”
“It is a pleasure to serve with you in the Chair, Ms Lewell. I find myself unequal to the level of analysis and detail that the hon. Member for Lichfield brought to public health in the Ministry of Defence. I will add just a few brief thoughts. The good intention of extending the life expectancy of the people in this country—although my hon. Friend the Member for Sleaford and North Hykeham made the good point that it is about living well, not just for a long time—is not always best served by creating committees, and additional duties, reports and responsibilities in legislation. The hon. Member for Winchester argued—I paraphrase, but it is a matter of record—that he would like all Departments to have an eye on the health of the nation. That sounds sensible.”
“She will not accept the new clause, but could the Minister at least answer some of the questions that parliamentarians and the public are asking?”
“It would at least force the Government’s hand. I suspect that the sum is far higher—into the billions—but we do not know. We are left to sit and speculate, despite the Secretary of State’s appearance before the Health and Social Care Committee. He must have expected that question to be asked. He was flanked by the permanent secretary of the Department and the chief executive of NHS England. By the way, he was a Treasury Minister prior to becoming the Secretary of State just two months ago. We had all the key people in the room to give some sort of indication about cost and benefit, yet none was forthcoming. Although I cannot back the new clause, because I do not think statute is the right place to ask these questions, I completely understand why it was tabled.”
“Until we get those answers, so that people can see the fundamental considerations on which the Government base their decisions, this is a fairly unappealing way of going about securing investment for life sciences. The Secretary of State talked about the benefits of this deal, and I am sure that there are benefits. I do not disagree with the principle of paying more for drugs if it has benefits for research and development—I understand and support that principle—but I want to be able to see what those intended benefits are, in some form of document or analysis. I do not want bare statements that say, “Research and development is good.” We all know that; I want to see the cost. New clause 15 would also set a cost threshold of £100 million. The Government are not in a position to confirm whether the US deal would qualify under clause 15.”
“This is not the place for them, but in the absence of basic answers, I can see why the hon. Member for Winchester and others have raised these issues. I will ask the same questions of the Minister. If her boss cannot answer them, perhaps she can, as the Department has had 24 hours to reflect. How much will the deal with the US cost? Are there—even if the Government do not want to disclose them—a figure and an impact assessment? If the Government can confirm that a figure or bracket exists, why are they not willing to discuss them? If the Government can confirm that some sort of impact assessment has been done, when did it happen and why are they not disclosing it?”
“I asked not what the figure was, but whether one even existed or whether any analysis had been done. We ended up going backwards. We parliamentarians and the public still do not know the answers to some basic questions, even though a deal has been done. Do we know how much it will cost? Does a figure exist? Has an analysis been done? Are we talking about a figure or a bracket? On what basis was the deal agreed? We received absolutely no answers at all to those questions. To conclude, I posed a fairly obvious question: how on earth can we strike a deal to pay 25% more for drugs that we already get without knowing how much it will cost? No answer was given to that question either. It is no wonder that these fundamental questions have effectively come in the middle of the Bill’s passage.”
“As my hon. Friend the Member for Farnham and Bordon said, we on the Health and Social Care Committee heard from the Secretary of State yesterday. These new clauses were obviously drafted in advance, but the timing of their consideration is rather good. We had the opportunity to ask the Secretary of State, who sits right at the top of the Department, some fairly basic questions about the deal that will apparently see the NHS pay 25% more for US drugs than it does currently. We asked, for example, how much it will cost. The Chair of the Select Committee, the hon. Member for Oxford West and Abingdon, skewered the Secretary of State within minutes. A short while later, once the Secretary of State had had the chance to reflect on her queries, I had the opportunity to ask some even more basic questions.”
“Member for Winchester for allowing us to have this debate. I urge the Government, if they do not adopt these new clauses, to do all they can to relieve the pressure on unpaid carers up and down the country and to provide support for them.”
“Many do not see themselves as a carer—they see themselves as a husband, wife, daughter, son or friend—but they provide millions of hours of care and support, year in and year out. My former role was at a national nursing charity that seeks to support the families of those living with dementia. I saw for myself how much wraparound care can achieve in relieving pressure and unnecessary suffering, not just for the person living with dementia—it does not have to be dementia, but that is what I have experience of—long-term frailty or conditions that require support, but for their family and carer. Very often, the biggest care need for the person living with dementia is the biggest need their family carer has; if we can sort the family carer’s biggest need, they can go on and do so much more for the person they love. I thank the hon.”
“I am grateful to the hon. Member for Winchester for introducing these new clauses and for the debate that that is allowing us to have. Unpaid carers are too often a silent and fundamentally unappreciated part of society, which the system could not cope without. They are family members who are thrown into the role of looking after their loved ones, which they did not expect to have to do. Most of them have no formal qualifications, but through love and family ties, they provide unpaid support, which in many cases has a negative effect on the financial wellbeing of the household and involves a huge amount of emotional toil. The crisis in social care has lasted for decades under different Governments, who have struggled to tackle it, and it is putting increasing pressure on family carers.”
“I thank the right hon. Member for his statement. What a shame he has been asked to look at this issue only now, when his party had 14 long years in Opposition to work out what they wanted to do. Given that he acknowledges the system needs reform—as every new Government acknowledge—does he accept that, in today’s world, a system of cash payments to some people with conditions such as attention deficit hyperactivity disorder, where half the claimants are aged between 16 to 24, is not what they need most? Indeed, some of them have no financial needs at all. Does he accept that the money would be best saved—will he confirm that there will be savings?—and some of it invested in better health and community services, technology, and incentivising businesses to employ the six in 10 young people who are not in education, training or work?”
“The boss of the Maritime and Coastguard Agency told MPs in person that 93% of CROs surveyed were happy with moving to an unpaid volunteer model. That was false: the survey data shows that in many areas across the UK, nearly half would reduce their hours or quit. I am amazed that the Minister has any confidence in the boss of the MCA. Will he now confirm that the decision will not take effect in September and that he will consult properly himself, and will he say if he does have confidence in the boss of the MCA?”
“My hon. Friend is making a comprehensive speech and getting to the nub of all the relevant points. He talks about the system failing; to me, that is the absolute nub. The CQC is absolutely part of the system and of the establishment. If anyone is put off from making a complaint to the CQC when they think the CQC may be to blame, how on earth can the functions currently exercised by HSSIB continue in any effective way?”
“It may be that the CQC was fair in doing that, but it does not look good in the eyes of the public, and it will be a consideration for individuals seeking to make disclosures to an investigation. What will the public think?”
“Regardless of the systems, processes or protocols that the Government may wish to put in place to ensure that the safe space concept continues to exist, who on earth, if they are worried about making disclosures, will be satisfied and confident that those in the CQC, who may themselves be at fault, will not learn about a disclosure to the arm of the CQC that is empowered and entrusted with investigating the problem? An independent organisation, which HSSIB currently is, provides not just technical confidence but genuine confidence that people can speak freely on matters that may well be extremely unhelpful to their employer or the CQC—the national regulator itself. As the hon. Member for North Shropshire noted about the Shrewsbury and Telford situation, it developed while the CQC gave a good rating.”
“While the argument remains technical—and it is of course easier for the Government and indeed Dr Dash to make the arguments to abolish HSSIB in the abstract—when we talk about the real-life implications and how real people react to different circumstances, it is plainly very significant and negative. That is particularly true when it comes to investigating where things went wrong and when the system is at least in question and could be at fault. When there are things that need airing that people are afraid to air, confidence in the new framework is essential.”
“It is a pleasure to serve under your chairmanship, Sir Roger. The issues relating to clause 59, principally the abolition of HSSIB, have been well articulated, not least by my colleagues on this side. I wish to add some of my own views too. The debate has been framed as a transfer of the functions of HSSIB to the CQC, and indeed that is the title of the clause. The Minister has certainly articulated her arguments in that way. Effectively, it is the abolition of HSSIB. In fact, clause 59(1) plainly says: “The Health Services Safety Investigations Body is abolished.” Its functions may be transferred, but that is quite a significant change, and I do not want that to be lost within the context of this debate. At the heart of it is this idea around investigatory and regulatory functions.”
“If a powerful organisation such as the CQC—the regulator—can effectively mark its own homework, that does nothing to help the reputation of investigations and inquiries with the public. I suspect that the problem with them in the public’s mind is that it always looks a little bit like the establishment is looking at itself and coming up with an argument it can then justify. There is a perception that that does not lead to meaningful change. With this Bill, we will create an environment where that perception is even stronger.”
“We all hope and I am sure that the leadership will be in a better place in the near future, but if an organisation can be in such a bad place because of a failure of leadership, those circumstances can return in the future. Of course, it might be leadership failings within the regulator that HSSIB is asked to investigate. Again, if its functions are delivered by a regulatory organisation with leadership failings, there will be no confidence whatever that a truly independent and meaningful investigation can take place. Let us not forget that the public are somewhat jaded by investigations, inquiries and reports—justifiably so. They clearly have a valuable function, but their function is far more valuable if there is confidence in them.”
“My hon. Friend leads me to a point I was going to make later, but I will make it now. He is absolutely right: the CQC has not had a lot of good press and does not instil a high degree of confidence in professionals and the public. That is a very real issue. The Minister and, I think, Dr Dash have said that the transfer of powers from HSSIB to the CQC will not happen until it is in a better place, and that is all very well, but these changes are intended to last for a long time—indefinitely, presumably. To merely wait until an organisation is in a better place to transfer those powers, and to expect that organisation to remain in a better place in perpetuity, is wishful thinking. The CQC has had leadership issues.”
“It is, of course. I have been focusing on public perception, and my right hon. Friend is absolutely correct that that is only one part of it—an important part of it. Probably, the most important part is what actually happens, and that requires the NHS to learn and improve, which is very unlikely to be improved by this proposal.”
“There is a major issue here that has not been addressed. Until she, or those on whom she relies, can articulate the answer, I urge her to delay these proposals.”
“The answer was a rhetorical response: “‘What happens if the problem is this organisation or that one?’” –– [ Official Report, Health Public Bill Committee, 16 June 2026; c. 8, Q9.] That was the response from Dr Dash. But we are not talking about whether there is a problem with this organisation or that one; we are talking about the CQC, the organisation that HSSIB will become. If there is a problem with another organisation, HSSIB can investigate it; if there is a problem with the CQC now, HSSIB can investigate it; but when HSSIB becomes the CQC, there will plainly be a problem with investigating the CQC. When that question was put to the author of the report on whom the Government are relying, no answer was provided. The reply to my hon. Friend the Member for Farnham and Bordon was a rhetorical question. I urge the Minister to reflect.”
“Friend the Member for Farnham and Bordon made that point well. A busy and confusing regulatory landscape should not be a justification for getting rid of an essential investigatory body and disincentivising the investigation process and whistleblowing and disclosures, by tying it up with the regulator, which itself may be at fault. Streamlining and dealing with a busy and confusing landscape are objectively good reasons to do something, but not this. That is the central point. As my hon. Friend the Member for Farnham and Bordon referred to, the question was put to Dr Dash, the author of the recommendations, when she gave evidence: what happens if there is a problem with the Care Quality Commission once HSSIB has become part of it? I think we rightly expected a fairly clear answer on that.”
“The shadow Minister is absolutely right. Perception is a problem, but the reality on the ground is perhaps an even greater problem. Both are issues here with what the Government plan. There could be a reason why this merger, or the abolition of the Health Services Safety Investigations Body, needs to happen, but we have not seen that compelling argument. We have seen some attempts at justification, but they seem to be incredibly thin—and that is being generous. The principal argument seems to be that there is a busy and confusing landscape when it comes to investigatory and regulatory bodies. The figure Dr Dash put forward was something like 150 different organisations; she was asked to review just six of those. Even if she were to have abolished all six, it clearly does nothing to reduce the busy and confusing landscape. My hon.”
“I am a member of the Health and Social Care Committee, and the hon. Member is absolutely right to say that Healthwatch England raises issues with us. When the Department assumes those roles and functions, I very much doubt that it will be as keen to disclose such issues to the Committee.”
“So far, they are light indeed, or she has failed to articulate them. I think that there is a reason she has failed to articulate the positives: they simply do not exist. I look forward to the Minister’s response. I urge her to take some more interventions, because the arguments she has given to the Committee in her speeches at the end of each discussion have tended to raise more questions than they have answered. We can only deal with that by intervening on what she says.”
“Let us ensure that patient voice is articulated by those who do not have a primary obligation to their employer, but have an obligation to an independent organisation with functions that serve solely to amplify and project the voice of patients. There are a number of issues with the abolition of local healthwatches, but I will save that for the next discussion. I want to make the wider point that there is a centralisation issue here too. Whether the Government like it or not, this measure will centralise powers into the Department; it will take outside powers from Healthwatch England and bring them in-house. That is nothing short of a centralising measure. The Minister needs to address the justification for that, because the more negatives there are to this decision, the more we need to understand the positives.”
“We have heard how the Select Committee and MPs, in their free-ranging Back-Bench function, benefit from hearing that voice through an independent organisation such as Healthwatch England, because it allows them to fulfil their scrutiny function. This is not just about decision making; it is also about scrutiny of decisions once they have been made. What will the Select Committee, MPs and journalists do when they no longer have the light shed by that independent voice? As my hon. Friend the Member for Farnham and Bordon has pointed out, representatives who are employees in the Department of Health and Social Care rightly have other overriding primary duties to the employer—the Department itself.”