(10 years, 7 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
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I am pleased to speak in this debate with you in the Chair, Ms Dorries. Other Members may not know that we made our maiden speeches together, so we have always been inextricably tied in that way.
I am raising issues today because I want the Minister, NHS England and the Health and Social Care Information Centre to appreciate some of the real concerns about past and current uses of NHS patient data. I will talk about concerns about a lack of transparency in decision making, the commercial use of patient data and the lack of consent for that use.
The chair of the HSCIC talked last week about the organisation’s having an “innocent lack of transparency”. That was an inappropriate description of an organisation that is causing serious concern about its handling of NHS patient data. A lack of transparency cannot be tolerated in the part of the NHS that is trusted with safeguarding patient data and I do not accept the description of “innocent” for that lack of transparency.
At a recent meeting of the Select Committee on Health, Members asked questions about decision making on data releases from the NHS Information Centre. The panel members, who included the Minister, were asked how many of the key decision makers from the NHS Information Centre, which released patient data to insurance actuaries, had later become decision makers in the HSCIC. Max Jones, director of information and data services, said:
“The executive directors of the HSCIC with responsibility for this area were not part of the old information centre.”
When asked again whether the individuals who made the decision on transferring data to insurance actuaries became decision makers in HSCIC, he replied that
“the very senior management in the HSCIC is not the same as very senior management that was in the”
information centre.
The Minister has recently given me an answer to a written question that directly contradicts that and I am concerned about that. I asked him about the numbers and levels of staff who had transferred to the HSCIC from the NHS Information Centre. His answer stated that, of the 11 members from the management board of the HSCIC:
“Three of the non-executive directors and two of the executive directors were previously members of the NHS Information Centre management board. One of the executive members is graded as a very senior manager post and the other transferred as a senior doctor.”—[Official Report, 17 March 2014; Vol. 577, c. 457W.]
Given that that directly contradicts Max Jones’s answers to the Select Committee, will the Minister ask Max Jones why he gave those incorrect answers?
Dr Mark Davies, one of the senior executive directors, joined the NHS Information Centre in 2008 and transferred to the HSCIC when that was established. Indeed, an article last August described how Dr Davies sits in the exact same office in Leeds that he occupied when the HSCIC was the NHS Information Centre. He is the director of clinical and public assurance—a post that, surprisingly, is being made redundant this month. Will the Minister tell us why a senior post on public assurance is judged to be redundant, given the lack of public confidence in the plan for care.data and the many questions being raised by me and others about commercial uses of patient data?
I congratulate my hon. Friend on securing this timely debate, which is raising some important issues that we need clarity on. We have just come from a seminar in which the Health Committee had some expert witnesses. Does she agree with the conclusions put forward there about the need for clarity before we go ahead with this data collection? I am thinking particularly about the cyber-security review, safeguards on anonymous or pseudo-anonymous data, separating out purposes for controls, a tighter definition of the care data—
Very much so. I must tell the Minister that we have not had time to absorb all of what has happened at the HSCIC, but we are disturbed by much of what we have learned. It seems as if there has been a proliferation of organisations and committees and that, as the use of that data and commercial data has burgeoned, the NHS has lost control of what is going on. That is of real concern.
I very much agree. Last night I tweeted that I was to have this debate today and I was astonished with the response I got—an awful lot of people are very concerned about the issue. I will come on to opt-out in a moment, but let me conclude the point I was making about the director of public assurance’s post being made redundant. There will be considerable interest from Parliament on the basis for and the terms of that redundancy. I hope there will be no suggestion of a compromise agreement or gagging clauses. There are serious questions to ask about some of the activities.
While Dr Davies is still in post, there are a number of questions to ask about his role and those of his colleagues in the NHS Information Centre that later became the HSCIC. Dr Davies has been the chair of the four-person data access advisory group. Having two senior HSCIC employees on the advisory group on sensitive data releases, including its chair, brought criticism about a lack of independence. As chair of the group, Dr Davies also had the right to approve data releases unilaterally from the HSCIC, outside the committee. He was therefore in a powerful position. Indeed, it was reported in The Guardian last year that Dr Davies used that power to release to the Cabinet Office the confidential medical records of teenagers taking part in the national citizens service.
Perhaps more recently, Dr Davies’s views were becoming out of line on some aspects of the Government’s stance on care data. The Guardian reported in January that Dr Davies said that there was a “small risk” that certain patients could be “re-identified”, because insurers, pharmaceutical companies and other companies had their own medical data that could be matched against the pseudonymised records. He said:
“You may be able to identify people if you had a lot of data. It depends on how people will use the data once they have it. But I think it is a small, theoretical risk”.
The risks in this area have been rightly getting much attention and the Health Committee heard more about them this afternoon. Examples can be taken from the websites of both Harvey Walsh, a company that boasted of having more than a billion linked patient-level records and an ability to track patients over time, and OmegaSolver, the company with the patient analyser tool that it claimed can track patients throughout their hospital care.
In the case of OmegaSolver, its website held example screens showing use of its Patient Analyser tool, which it said could track actual patients within every hospital in England, providing up-to-date information for every disease area.
My hon. Friend is making an essential point. Whole data sets from the hospital episode statistics have been handed over to third parties, and that is absolutely reckless. We need those data to be deleted to restore public confidence in who has got the data and for what purpose.
Indeed, and I say that they “held” that information because websites such as those that I mentioned were suddenly altered when attention was drawn to the capabilities that those organisations claimed to have when it came to tracking patients. The Minister and hon. Members may have seen reports about how the medical histories of people in public life could be tracked using online tools of that type. Widely reported accidents or medical procedures undergone in NHS hospitals clearly provide enough information to spot one patient event in the records and then read across to every hospital visit for that individual.
I ask the Minister not to echo the mantra he has used before or the one the HSCIC used when asked about OmegaSolver—that only aggregated patient data are used and that that does not represent the experience of an individual. It is clear that commercial companies granted commercial reuse licences have claimed that they can track
“actual patients within every hospital within England”.
As I said in the recent debate on the Care Bill, the hospital episode statistics database was originally an administrative database. When did any of us sign up to having our data used to recalculate the cost of insurance cover or by pharmaceutical companies as customers of OmegaSolver? I do not recall signing up to that and I am sure that other hon. Members did not, either.
Does the Minister agree that perhaps we should go back to thinking that patients should have the option of having their data used only for clinical care and for commissioning that care? In his response in the Care Bill debate on these issues, the Minister said that
“people can, at any time, object or change their mind, and the Health and Social Care Information Centre must respect their wishes and remove their data from records.”—[Official Report, 11 March 2014; Vol. 577, c. 206.]
At the time he said those words, I thought, “That is not currently the case.” I understand that deletions are not permitted and, once a patient’s record has been extracted, they cannot get it removed from the database. If it is in fact a new development that patients can change their minds and request that their data be removed from the records held by the HSCIC and by commercial companies, that will be welcomed, but I really look forward to the Minister telling us how that happens.
I gave the example of Harvey Walsh. They have described themselves as main suppliers of hospital episode statistics and NHS data to the pharmaceutical industry. Can the Minister tell me how an NHS patient can have their records removed from Harvey Walsh’s AXON database or any of the other databases that are outwith the HSCIC?
In the Care Bill debate, the Minister was also asked a question about whether free text would be uploaded from patient records either now or in the future, and he answered:
“As things stand at the moment, free text is not going to be used. That is the reassurance given by the HSCIC”.—[Official Report, 11 March 2014; Vol. 577, c. 206.]
However, Professor Julia Hippisley-Cox and Professor Ross Anderson have pointed out to Health Committee members that researchers already make use of free text from GP patient records. Indeed, medical students and computer science postgraduates at the university of Sussex and at Brighton and Sussex medical school have begun work on analysing doctors’ notes for data from free text.
The data being used come from the Clinical Practice Research Datalink, and Select Committee members were told that those patient data are being used without specific patient consent or section 251 support—it is section 251 of the National Health Service Act 2006. If the HSCIC has given the Minister an assurance that free text from GP records will not be used, can he tell us whether and when the use of free text from GP patient records in the CPRD will be stopped, particularly given that that appears to be happening without patient consent? Patient consent is important, and I still get the feeling from the HSCIC that individuals are somehow being labelled as selfish if they have concerns about sharing their data.
I want to come back to concerns about the existence of the commercial reuse licences granted by the HSCIC. I have tabled a written parliamentary question on this, but I also put the question to the Minister now. He has confirmed that the HSCIC has granted commercial reuse licences. Will he now provide me with a list of each past and present holder of a commercial reuse licence granted and, for each licence holder past and present, will he list the purpose or purposes for which they applied and were approved to use NHS patient data from the HSCIC and its predecessor, the NHS Information Centre? As patients of the NHS, we deserve to know in which places and with which organisations our data are sitting and what they are being used for.
(10 years, 8 months ago)
Commons ChamberIn the concerns I am listing, I am not touching on the use of data in medical research. My concern is about the revelations we have had in recent weeks. I am citing commercial uses. Those data are being used on a chargeable basis and the companies involved seem to be crowing about it.
Can a project such as care.data guarantee that what patients sign up to now—or at any point in time—will not mean something different in future months when new datasets are gathered? The hon. Member for Totnes (Dr Wollaston) touched on some of the exciting possibilities for data, but new uses are being planned all the time. I mentioned systems in the US, but the Health Secretary recently signed a memorandum of understanding with the US Health Secretary for secondary uses sharing. The Minister last night said that he would not comment on a US system, but our hospital patient data is on those systems being used on a chargeable basis. Should patients have the right to withdraw their consent if new uses are developed that they do not approve of? The data have gone, and people are developing new uses for them, way beyond what any patient may have felt they consented to.
My right hon. Friend the shadow Health Secretary raised the issue of lack of transparency over the patient’s right to opt out. He asked about the junk mail leaflets— as they have been called—that were not even delivered to every household. What do Ministers propose to do to explain to all patients about the extraction of their identifiable personal data, and what precisely the dissent codes mean? We touched on this in our Health Committee inquiry sessions, and it was not clear, although some people thought they knew. It is a pity that Ministers have not taken the opportunity to answer the questions that were put to them in Health questions—the information changed on the HSCIC database on the very day we had Health questions in the morning.
We know that NHS England and the HSCIC can require GPs to upload patient data in an identifiable form from every GP practice in England, to be linked with the hospital episode statistics and other datasets. That is concerning enough, because it is a powerful new use of a lot of data, but the hon. Lady suggested that the HSCIC is talking about free text. That is a concern, because that is the place where people open up to their doctor and might give information that they do not want to be shared.
It is important that we know exactly how the HSCIC is funded. In the spirit of transparency, will Ministers request full disclosure of all funding sources of the HSCIC, including outside earnings from third parties for the use of data? I have talked about seeing our hospital data now being used on a chargeable basis by companies such as BT in the US. Who pays for the HSCIC’s staff? Are staff seconded to the HSCIC? Who pays the transaction costs? We have seen examples recently of networks of private organisations coming into NHS England to write and fund reports and lead consultations. Who pays for staffing and transaction costs, if it is third parties, is a key aspect of transparency.
The Health Committee has held an initial inquiry into care.data, and I and other Committee members expressed real concerns about the scheme and the impact it could have on the trust between patient and doctor. Our concerns have been compounded by news that commercial companies have been allowed to pay for NHS patient data, and use them for purposes unknown to the public. The use of our data has gone beyond our control, the data are in other countries and uploaded to cloud servers, and we do not know where they are.
My hon. Friend is making pertinent and relevant points. Does she share my concern about the need to tighten up on section 251 exemptions? They allow the use of identifiable data for commissioning purposes. NHS England was granted a 251 exemption last April, and that may lead to identifiable data being used at a national level, a regional level, in the area teams and in the clinical commissioning groups. Is that something that the Government should address?
Indeed it is. There is a question about why CCGs have to have identifiable patient data, and there is a lot of concern about that, which my hon. Friend is right to raise.
We expressed our concerns, but they have been compounded by reports of use of data unknown to the public. The Minister was unwilling to answer the point I wanted to put to him earlier in the debate about how the HSCIC will treat organisations such as BUPA, which are insurance providers as well as providers of health and care. I hope that he will answer that question when he winds up the debate. BUPA is one example, but there are other companies that have multiple functions—some of them are straightforwardly commercial and others involve health and social care—and there is scope for confusion if those firms apply for and obtain access to the data.
The revelations we have already had show that HSCIC does not have accountability, transparency or sufficient control over releases of patient data. In our Committee inquiry, it was put to HSCIC and to NHS England that one of the ways being recommended to ensure that escapes of patient data did not happen, and to allay the fears and concerns we have expressed, was for HSCIC to run on the basis that it kept the database intact and did not download datasets outside the information centre. What it did was take in research queries and ran them. That would be much safer and that is what is done on secure systems in other places. A mechanism has been suggested and I hope it is being considered.
I appreciate the comments made by my colleague, the hon. Member for Totnes about not opting out, but a recent survey of 400 GPs found that 40% intend to opt out of the scheme because of a lack of confidence in how the data will be shared.
(10 years, 8 months ago)
Commons ChamberIn principle, I support the utilisation of truly anonymised patient data sharing for the purposes of improving public health, but I take issue with a number of the Minister’s points, not least in relation to new clause 25, tabled by my hon. Friend the Member for Copeland (Mr Reed). Accountability is important. If the Minister and the Government are serious about addressing the public’s concern, they would ensure that the Secretary of State and Ministers are responsible rather than an unelected quango. Frankly, the Minister’s assurances at the Dispatch Box this evening, and those given to the Health Committee just a week or two ago, need to be in the Bill, so that there is a level of accountability and some comeback.
When we debated patient data sharing in Committee and, more recently, in Westminster Hall, my impression was that Ministers have tended to conflate legitimate patient privacy concerns, which are shared by hon. Members and members of the public, with the general lack of support for the utilisation of patient data for further research. They are mistaken, because right hon. and hon. Members are more or less unanimous in supporting any move that can lead to better research, improved care and increased safety.
I am grateful to my hon. Friend for giving way, because the Minister was clearly frightened of answering questions from me and from my right hon. Friend the shadow Health Secretary. The Minister refused even to listen to the question, so I shall ask my hon. Friend: does he think that there is scope for confusion because some companies are in the market of insurance products and health and social care? The Minister would not take the question, so we do not have any answers on how a firm such as BUPA, which is already involved in research and already using the data, could be dealt with.
That is a perfect example and an important question that the Minister and the Government should answer. If we are to ensure that we have public trust in the data and who will use them, such questions must be answered and people be given the opportunity to consider what the Government propose.
It has become clear in recent months that the public lack confidence that the implementation of the care.data scheme as currently proposed would protect the data from inappropriate use, not least because of the point that my hon. Friend has just made. I am sure she would recall that we recently had a Health Committee session on this issue—in fact, the Minister was present—and certain assurances were given, not by the Minister but by one of his officials, that companies outside the United Kingdom would not have access to such data. The thought ran through my mind that many private health companies are global in their operations.
The hon. Gentleman makes an excellent point. It is not my intention to do that, but we have to recognise that the public awareness campaign—the Government’s early assurances about leaflets and letters—has been wholly inadequate. At a time when it is important for the Government to instil public confidence in the scheme, they keep doing things that undermine public confidence, for example by giving the hated company Atos—if you do not mind me using the term, Mr Speaker, because of the debacle in the Department for Work and Pensions—the contract to extract the data. There seems to have been a catalogue of errors.
I accept that this proposal has the potential to be a huge step forward. The Minister said it was not revolutionary, but I am quite often in favour of things that are revolutionary. It is revolutionary, because previous data collections from a hospital-based setting, from secondary care, have been largely episodic. This scheme will harvest data from GPs and primary care to follow the whole of the patient journey, and to identify trends and follow-ups. That is a revolutionary step forward, provided we have the necessary safeguards and assurances, and that we rebuild public trust. I am not suggesting that the scheme is unworkable and cannot be reformed, but there is a huge job to do to ensure that we restore public confidence.
I wanted to mention an example that has been presented to me in relation to rare illnesses. It is suggested that a patient could never be identified from the data, but identification might be possible in the case of very rare conditions, particularly if pharmaceutical companies had their own databases. We need some form of protection to cover those circumstances as well.
I thank my hon. Friend: he is being very generous in giving way. Does he agree that scope is an issue? The Hospital Episode Statistics database was an administrative database, and that is what our data were being used for. My hon. Friend has made an important point about the loss of trust. When did any of us sign up to having our data used to recalculate the cost of insurance cover for long-term illness? When did we sign up to have it sold on a chargeable basis by BT and by MedRed, on its cloud system in the United States? Once control has gone, it is possible for the scope to vary all over the place.
That is a good point. It is very important for the Government to lay down parameters for the scope.
The sharing of medical data has a fantastic potential to do good, as long as the necessary safeguards are there, but if it is mishandled, it also has the potential to do great harm. Patient data consist of very confidential information, which could prove damaging to the public if it were to end up in the wrong hands. We have already seen examples of that. I share the public’s fear that the Government are not seeking appropriate safeguards in respect of highly personal and sensitive information. Despite the Minister’s assurances about new clause 34, I do not think that it goes far enough.
Let me return to the issue of accountability. The benefits for companies that seek to misuse or leak patient data, for example, are considerable. The Minister has ruled out insurance companies, but I am worried about private health care firms. The pharmaceutical industry could profit from the re-identification of patient records, and I believe that the absence of parliamentary accountability to which I referred earlier, and a lack of clear and harsh penalties for those who misuse data, are undermining trust in what could be a highly beneficial scheme. Subsection (2) of new clause 25 defines misuse, and subsection (3) gives an indication of the penalties that would be applied. I think that they might act as a deterrent.
(10 years, 9 months ago)
Commons ChamberI am grateful to the right hon. Gentleman for that intervention, because his point is germane to my argument. I shall develop that subject in the few minutes I have left when I talk about the consequences of what is happening in social care. I certainly feel that some of the policies that his Government have supported have contributed to the crisis. For example, the top-down reorganisation has had a damaging effect on A and E performance. I will address that point in a moment.
Other hon. Members have spoken today, in interventions on my right hon. Friend the Member for Leigh (Andy Burnham), about patients being ferried to hospitals in police cars. That has certainly happened in County Durham, and it must be a cause for concern. The A and E crisis can largely be placed at the Government’s door, because they have not faced up to some of the problems. It has rightly been pointed out that the number of admissions had risen by 633,000, not least because of demographic changes involving more older people and people with core morbidities and multiple conditions. That is placing a huge amount of extra pressure on A and E departments, but that pressure is being compounded by damaging cuts to local authority budgets.
My own local authority, Durham county council, is experiencing cuts of £222 million between 2011 and 2017. I know that Ministers will say that social care is ring-fenced and that £3.8 billion is being transferred to the home care fund, to be made available to clinical commissioning groups and local authorities, but what that means in real terms for the people living in Easington is that EDPIP—the East Durham Positive Inclusion Partnership—which supports frail elderly people and young people in vulnerable families, is closing down because of a lack of funding from the local authority. Similarly, East Durham Community Transport, which provides transport to take the frail elderly—including my mother, incidentally—to day centres and elsewhere, has been severely curtailed.
The Government have been warned by experts that cutting the staggering £1.8 billion from council social care budgets in the first three years of this Government would have a knock-on effect for the NHS, particularly in accident and emergency departments. That point has been made in expert witnesses’ evidence to the Health Select Committee, on which I have the honour to serve. Because of the cuts to social care, fewer older people are getting adequate support in the community, and are therefore visiting A and E departments instead. The impact of that is twofold. First, it means that those with care needs are not getting the treatment they need. Secondly, it means that our A and E departments are being put under great strain. Directly and indirectly, the Government have ignored warnings that by slashing social care they would make it difficult to discharge patients with care needs because it would be unsafe to send them home.
Perhaps it would be pertinent at this point to mention the comments of Sir Bruce Keogh to the Health Committee’s inquiry into urgent and emergency medicine. When I asked him if the cuts in social care bothered him, he said:
“Yes, it does bother us and I think it bothers everybody. We are trying to maintain a stable and improving service in the NHS at a time that our colleagues in social care are taking a massive hit to their baseline.”
(10 years, 11 months ago)
Commons Chamber(11 years, 11 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I congratulate my hon. Friend the Member for Gateshead (Ian Mearns) on securing this debate and on the way in which he opened it. In the little time I have, I want to focus on the carers of people with disabilities.
Carers’ organisations have told me that they fear that the welfare reform measures proposed by this Government will seriously undermine the ability of carers to care for people with disabilities and for older family members. On the reform of the disability living allowance, the Government’s original impact assessment said:
“We expect that the introduction of Personal Independence Payment will not affect the overall size of the Carer’s Allowance population”,
but analysis by Carers UK shows that there will undoubtedly be a knock-on effect on those who claim carer’s allowance. If the number of claimants of the allowance falls, as it moves to PIP, in line with the caseload for DLA, Carers UK estimate that 23,800 carers will be unable to claim carer’s allowance.
On the housing benefit cap, it seems clear that around 5,000 households that will be capped in 2013-14 are expected to contain a carer. Those carers will see an average reduction in income of £105 a week. That is quite clearly at odds with the Government’s stated policy for the cap.
Around 1 million carers have either given up work or reduced their working hours in order to care. An average drop in income of £105 per week is a cruel way to treat carers who have given up their careers. It could also be counter-productive, in that it could make caring for a family member financially untenable and force more people into taking up the option of care homes or residential homes.
Many carers already face financial hardship. A survey of carers by Carers UK found that 45% of them were cutting back on essentials such as heating or food, and four in 10 were in debt as a result of caring. Carers are not choosing to give up work, but being forced into doing so by the crisis in social care. Carers UK found in a survey that 31% of working age carers gave up work or reduced their working hours to care because support services were not flexible enough, the person for whom they cared did not qualify for support, there were no suitable services in the area, or the services were too expensive or not reliable enough. There is not time now to go through how care charges have gone up.
In an earlier debate on social care, I talked about the impact of financial issues on the lives of carers. I have heard of one carer who had to take on a part-time cleaning job in the early evening because money was so tight. She puts her husband to bed at 4pm so that he is safe while she is at work. That is the reality.
Does my hon. Friend agree that it is a case not just of money—pounds and pence—but of the dignity of disabled people?
Indeed it is. The House of Commons has received reports that criticise care agencies for putting people to bed at 6 o’clock or 8 o’clock. This carer has to put her husband to bed at 4 o’clock. How must that feel to her? I have had further evidence that shows that that is not an isolated example. It is very common for carers who can no longer afford respite care to have to leave a person, perhaps wearing an incontinence pad, and hope that they will be safe in a chair while the carer has a hospital appointment or goes to work.
I question whether anyone here believes that it is right or fair to hit carers with further cuts to their income when changes already made by this Government are clearly hitting them. The manager of my local carers centre in Salford told me that, this Christmas, the centre’s staff are collecting and distributing food parcels to carers. That is something that they have not had to do since the 1980s. She said, “This does not bode well.” It does not, and it should not be happening to carers, who already give so much. I call on the Minister for a rethink on welfare reform for carers.
(12 years, 9 months ago)
Commons Chamber(13 years, 2 months ago)
Commons ChamberWe had this exchange many times in the Committee on a variety of clauses. We need to give some credit to the previous Government. I am old enough to remember when people routinely waited a year, 18 months or longer for life-changing operations such as knee and hip replacements. It is a real quality-of-life issue if someone has cataracts and has to wait a long time for an operation. I accept that Labour used the private sector. I am a socialist and make no apology for that, and I want the provision to be public sector. I was not a Member of Parliament and did not vote for the commissioning of private providers, but I acknowledge that the private sector played a role in bringing extra capacity and some innovation to the service.
My hon. Friend is making a wonderful speech. I wanted to make this point when my right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) was speaking about the number of operations and the improvements during Labour’s term of office.
In the 1997 general election when I was campaigning in Wythenshawe and Sale, East constituency, I met someone who had been told that he had to wait two years for vital surgery and was desperately worried that he would die while he was waiting. I met someone in my constituency in last year’s general election campaign who received a diagnostic test on Monday, found he had cancer on Tuesday, went into hospital on Wednesday and was operated on on Thursday and his life was saved. From two years to four days—I thought that was the best testament to the improvement that Labour had brought about in the NHS.