Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 1st April 2014 Commons Chamber

[Dr Poulter]

I think this is an own goal from the Opposition. They set the redundancy terms in 2006, when the shadow Secretary of State was a Minister in the Department, which have allowed extraordinary, eye-watering redundancy payments to be made, particularly to managers. That is to the disadvantage of front-line staff and patients. It is why we are currently in negotiations with the unions to ensure that we improve redundancy terms, stop those eye-watering payments and have more money to care for front-line patients.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

21. Talking of eye-watering payments, may I refer to the six-figure pay-off of £300,000 reportedly paid to Jo-Anne Wass, one of the 10 highest earners in the NHS? Despite the fact that she is leaving this month, the NHS is said to be paying for a two-year secondment for her, even though she will not return. How many 1% pay rises for nurses could be found out of that £300,000?

[Dr Poulter]

These are questions that the Opposition should have thought about—the hon. Lady was a Minister in the previous Government—when they negotiated the redundancy terms. They are Labour’s redundancy terms, which we are changing. When we look at the figures, under the previous Government’s NHS reorganisation in 2006 to 2008, we see that the NHS spent more than £360 million on redundancy and early retirement alone, which compares with only half that—£178 million from 2011 to 2013—under the current Government. How much more money would have been available for staff pay had the previous Government got that right?

NHS Patient Data

Baroness Keeley Excerpts

Tuesday 25th March 2014 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

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?

[Grahame M. Morris (Easington) (Lab)]

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—

[Grahame M. Morris]

I will. I just want to mention governance arrangements as well.

[Barbara Keeley]

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.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to debate and on her perseverance at every stage. Does she agree that although the commitment given regarding a patient’s right to their data will be respected, perhaps patients in the NHS see this issue from their own points of view? They do not see the IT implications of what is taking place; because of that, there need to be more assurances for the patient on what happens.

[Barbara Keeley]

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.

[Grahame M. Morris]

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.

[Barbara Keeley]

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.

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[Nadine Dorries (in the Chair)]

Order. Barbara Keeley.

[Barbara Keeley]

I, too, hope that the Minister will address that.

I want to give an example of data use approved by the Data Access Advisory Group of the Health and Social Care Information Centre, because I think that it is instructive. Minutes from the group’s July meeting show that the advisory group approved the use of hospital episode statistics data for HSpot Ltd and its FindMeHealth application. HSpot Ltd had requested HES data, including consultant codes, with the intention of publishing those data online to enable patients to compare procedures by hospital and clinician. Online information about FindMeHealth says that it is

“a new independent UK comparison site offering choice…to the growing number of people who are choosing to self-pay for private healthcare.

FindMeHealth compares prices across the top self-pay procedures and gives users access to the very latest data from NHS and private sources”.

What we have here is a kind of “Go Compare” website for private health care.

Much was said about uses of patient data in the debate on the Care Bill. The Minister said that information from the HSCIC

“may be disseminated for the purposes of ‘the provision of health care or adult social care’ or ‘the promotion of health’.”—[Official Report, 10 March 2014; Vol. 577, c. 136.]

Does the Minister think that the definition that he gave us extends to the HSCIC granting the release of patient data so that commercial companies can run comparison websites on the top self-pay procedures?

We need much greater transparency, and I thank hon. Members present for the questions that they have put on this matter. We need greater transparency from the Health and Social Care Information Centre, but we also need it about the other data sources and the other places where data are held. The chair of the information centre, Kingsley Manning, said in his speech last week that one of its key measures of success might have been that it was

“safely below the radar of public attention”,

but that organisation is no longer below the radar of public attention. Indeed, the organisation has become the story because of the errors that it has made, which mean that hon. Members and the public have discovered just how their confidential medical data are being used by insurers, by commercial companies and even on systems in the United States.

If people look at social media, as I did last night, they will see that there are many comments about just how much distrust people now feel towards the HSCIC. The organisation, as I said at the start, has claimed an “innocent lack of transparency”, but others accuse it of evasiveness and half-truths. As I have detailed, giving misleading answers to the Health Committee on established facts about who works for the organisation does not help.

All that has to change. Hon. Members, including me in this speech, have talked about ways in which the situation should and must change, and I hope that the Minister understands the vital need for that.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

It is a pleasure to serve with you chairing the debate, Ms Dorries. In some ways, I wish that we had new issues to discuss; many of the issues that we are discussing today we have thrashed out on a number of occasions in the Care Bill Committee and the Report debate earlier this month, so I am not convinced that there is a lot of new information that I can bring, other than giving further reassurances along the lines of those that have been given. However, it is important to make two points at the outset.

I congratulate the hon. Member for Worsley and Eccles South (Barbara Keeley) on initiating the debate and on her ongoing interest in this topic, but if she has concerns about a witness not giving correct information to the Select Committee, it is of course at her disposal to speak to its Chair, my right hon. Friend the Member for Charnwood (Mr Dorrell), and ask him to take that up with the witness. If she has those concerns, I suggest she does that. Of course, it is very easy to take comments—a few sentences—out of context. It may be that that is the case here; it may be that there are genuine concerns, but if the hon. Lady has those, it is for her to take them up with the Chair of the Committee and ask him to take the matter further.

[Barbara Keeley]

Will the Minister let me clarify the point?

[Dr Poulter]

I will give way in one moment. It is also the case, in relation to a number of the other issues and concerns that have been raised during this discussion, that some of the events and some of the evidence given to the Select Committee have of course been superseded by the amendments made to the Care Bill that we debated a couple of weeks ago, so it is difficult to see those points—

[Dr Poulter]

I am giving way to the hon. Gentleman’s hon. Friend in one moment. Let me complete the explanation and then I will be very happy to give way. Events have moved on since some of those evidence sessions, because of course amendments were made to the Care Bill that gave greater clarity and greater reassurance about the protection of patients’ data.

[Barbara Keeley]

Before the Minister moves off the point about the misleading evidence given to the Health Committee, may I put this to him? The Minister was there with Max Jones and Tim Kelsey—they were there supporting him at the Committee—and I think that this really is down to the Minister. I have, of course, raised the matter with the Chair of the Select Committee, but if a Minister brings civil servants and NHS employees with him to a Committee and those civil servants mislead the Committee—giving incorrect answers not once but twice—I think that it is really down to the Minister to raise the issue as well.

--- Later in debate ---

[Dr Poulter]

It is difficult to reply fully to such debates when we have very lengthy interventions, of which the hon. Gentleman is very fond. I would like to spell out to him what the quantum difference is. The Government have, through the 2012 Act, put in place safeguards for data protection that the previous Government never had. In particular, under the 2012 Act, data can be used only for the benefit of the health and social care system. We have put in place the safeguard that people can opt out from having their data collected and used. Those safeguards were not in place when the previous Government—

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

No, it is important to make these points. The hon. Lady is very party political on the matter, and it is important that she recognises failings that existed in the past. I have mentioned the collection of in-patient data from 1989, out-patient data from 2003 and A and E data from 2007-08. I am not aware of any safeguards put in place by the previous Government to allow patients actively to opt out of the collection of those data. If she is aware of any, I would like her to clarify the record.

[Barbara Keeley]

The Minister is talking about opt-out, but I asked him a specific question about commercial reuse licences. I understand that there are at least six of those—six massive copies of all hospital episode statistics data—out there. How does an NHS patient get their data deleted from those copies, which sit with companies such as Harvey Walsh and OmegaSolver? How does that happen?

Care Bill [Lords]

Baroness Keeley Excerpts

Tuesday 11th March 2014 Commons Chamber

[Dr Sarah Wollaston (Totnes) (Con)]

I love medical data. They have undoubtedly saved my life and the lives of almost everybody in the House. Medical data, particularly big data, allow us to identify which drugs and procedures work and which do not work. They enable us to pick up the rare side effects of medications that have recently been released on to the market before they can wreak the kind of havoc that we have seen in the past. They enable us to identify which are the good hospitals and which are the failing hospitals. They allow us to identify which clinicians need serious retraining and from which clinicians the public need protection.

I would argue that evidence-based medicine is one of the greatest advances of our age. Evidence-based medicine works a lot better if we have access to big data. I state for the record that I do not intend to opt out. I hope that the Government will use the six months that we have to mount a clear campaign to the public that sets out just what the possibilities are.

I also feel that some of the concerns about releasing big data to pharmaceutical companies are misplaced. We need our pharmaceutical companies to be able to access those data, and there is a virtuous circle. We know that if we attract more research to the UK, not only will that benefit our universities, it will create more employment.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

My honourable colleague from the Health Committee mentions pharmaceutical companies. Does she feel it is appropriate—we touched on this in the first part of the debate—that insurance companies have access to hospital data? As I said yesterday, BT now has access to our hospital patient data on the cloud systems in the United States. Does she think that those uses are concerning, and what should we do about them?

[Dr Wollaston]

That is absolutely correct and I will come to those points later in my remarks. The public did not expect to see their records uploaded to insurance companies, specifically where that resulted in higher premiums for many people.

We have a virtuous circle of improving access to data for our universities and creating high-quality jobs within the industry. If we can attract research to this country, and it is carried out among the UK population, the results from that research will be more relevant to the British population. Also, less research will be carried out in circumstances that are ethically questionable or with oversight that may not be up to the standards we expect in this country, or that sometimes exploits people in developing countries and where we cannot be sure of the accuracy and reporting of that research.

This is a virtuous circle, but I am afraid it has unfortunately been broken by the oversight and some of the arrangements that have taken place in NHS England and the Health and Social Care Information Centre. It is frankly beyond me that nobody has assumed responsibility for destroying the trust in what should have been the most exciting advance that would have benefited countless hundreds of thousands of people, not only now but in the future.

On the six-month delay, I call on the Minister to set out clearly how we will campaign to inform the public of the benefits of the proposal, but also of the risks. We have seen a rather patronising approach that has assumed the public will not notice or care about those small risks, but they are there and we must set out clearly what they are and how they will be addressed and minimised. There is much more we can do to minimise those small risks.

Of course we need transparency about past errors; the performance of NHS England and the Health and Social Care Information Centre in the Health Committee was disappointing. I am glad that on its website, NHS England has now clarified that Sir Nick Partridge, former chief executive of the Terrence Higgins Trust, will conduct an audit of all previous data releases by the NHS information centre—the predecessor body. We are also expecting the release on 2 April of all the data released by the current body. I understand that that will set out the legal basis for those releases, but also their purpose, and that goes to the heart of my amendment.

We must have clear penalties for breach, not only in the provisions in the Bill, but across the whole NHS and social care sector. The Minister will know that in practice, if somebody wants to snoop on someone’s personal medical data, there are far easier ways to do it. He will also know that the penalties are derisory. In a well-publicised case in December 2013, a finance manager at a general practice had been deliberately snooping on the records of thousands of patients within the practice, and focusing—rather disturbingly—on one young woman he had gone to school with and her family. Those were repeated breaches of her and her family’s privacy in a really toxic way. That individual was fined only £996. The public need to be clear that there will be severe penalties not only for individuals who deliberately breach privacy, but for companies. A fine of £996 for an insurance company or a large body is laughable.

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[Dr Wollaston]

I agree with my right hon. Friend. Free text takes us into a different territory. People say things in free text to their doctor knowing that it will not appear in a coded form.

There are other ways in which we can improve reassurance for the public. Perhaps we could pseudonymise data before they leave the practice, which would introduce another important layer of protection. That suggestion has been made to the Minister on a number of occasions.

[Barbara Keeley]

The hon. Lady was in the Chamber yesterday when I talked about the cloud systems using NHS patient data launched in the States. What disturbed me about that was that the commercial companies involved said that the data—our patient data that they were using—included clinical data, demographics, education and income. That provided a context, and the companies could link episodes throughout a patient’s life. People would be disturbed if they understood that companies charging for usage in another country had linked their data in that way and had almost a lifetime’s coverage of people’s medical records.

[Dr Wollaston]

Linking primary and secondary care data is so important, but the purpose to which it is put is at the heart of the matter. To whom are the data released? If data are uploaded to Google—27 CDs of our database—and leave the premises, we have no control over them. We could not apply in the States the controls and sanctions I have described. It is simply not good enough to be reassured that the data will not be handled by Google staff. What is to stop them accessing the data when they have gone offshore? The hon. Lady is right to make that important point.

My amendments are about improving the situation in two ways, the first of which is on the purpose of the information. Will the Minister consider adding the word “improving”? He might be concerned that, if the wording is “improving health and adult social care”, the Bill could restrict open research. I do not agree. He will know that improving the care of patients is fundamentally the purpose of research. The amendment would therefore not restrict open research. The amendment would put beyond doubt the fact that the fundamental purpose of releasing data to, for example, insurance companies or Genomics UK, is improving care. People would see that the data release is not for a fundamentally commercial purpose to benefit a commercial organisation without a necessary link to improving care for people in the UK. Those questions should be asked at every stage of the process.

It was reassuring yesterday to hear the Minister clarify that insurance companies will be specifically excluded. However, there is no reassurance in the existing wording in respect of other organisations, including, for example, the Department for Work and Pensions. We can see how the case could be made that disseminating information to the Department for Work and Pensions is for the purposes of

“the provision of health care or adult social care”

or “the promotion of health”, which is the existing wording of new clause 34. As he knows, the longer somebody is off work with, say, lower back pain, the less likely it is that they will ever return to work. The Department for Work and Pensions could argue that disseminating information is all about improving care, but in fact, the fundamental purpose might be altogether different. If the principle in the Bill is that information dissemination is clearly about “improving” care, it would focus people’s minds on the underlying purposes when they make appraisals about whether their information should be given out. That could happen without disadvantaging primary medical research access to the information—the principle of improving care would clearly be at stake. I hope the Minister considers adding the word “improving” to the Bill.

My amendment (b) would mean that there is a reassurance in the Bill on how the data are handled by the person receiving them. We have the reassurance of the confidentiality advisory group, but including a responsibility and a duty in the Bill not just for those giving out the information but for those receiving it would be helpful. I ask anyone following this debate to hold their fire and not to be distracted by those who are rather jumping on the bandwagon on this issue and seeking to undermine the fundamental principles behind care.data. Those principles are important and we could save countless hundreds of thousands of lives in the future by having good access to medical data. But it simply will not do to gloss over the very real concerns that have been expressed. We will see the same problems arising six months down the line unless those very real concerns are addressed. To those who are following the debate, I say, “Do not opt out.” Let us give the Government, NHS England and the Health and Social Care Information Centre the opportunity to address those real concerns and to put them beyond doubt. I will not opt out and I hope that others will join me.

[Barbara Keeley]

In my early career, I worked as a systems programmer and engineer for IBM. I do not usually have much opportunity to mention that, but it is probably appropriate in this debate. I have been struck in recent weeks by how many people with an IT background—as well as those with medical backgrounds—have serious concerns about care.data and the plans of the Health and Social Care Information Centre.

The Minister was not keen to take interventions last night, so I will ask my questions now. I want to touch on the important issue of consent for the uses of patient data. As I said earlier in the debate, the hospital episodes 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 for long-term illness? Given the points I made about the use of our confidential hospital patient data in commercially chargeable systems in the US, when did we sign up to have our data used on a chargeable basis by companies such as BT and MedRed on their cloud systems in the US? I do not recall doing that, and I suspect no one else does either. Does the Minister agree that patients should have the option of having their data used only for clinical care and for commissioning that care? If the genie is not completely out of the bottle yet, that is a question worth asking.

[Paul Burstow]

The hon. Lady is making important points about the need to be clear about what these data are used for. There is an argument that anonymised and properly controlled data have a part to play in the area of medical research. Does she think that should be out of scope, or can we have safeguards that enable it to be in scope? Understanding whether a medicine works in a particular way with a population is a very powerful use of such data. In her view, is that appropriate or not?

[Barbara Keeley]

In 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.

[Grahame M. Morris (Easington) (Lab)]

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?

[Barbara Keeley]

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.

[Dr Wollaston]

Does the hon. Lady agree that we have an opportunity, in the next six months, to provide reassurance on some of these real concerns? Does she share my hope that GPs will change their position and that we should be doing everything we can, as opinion-formers, to encourage them to do so?

[Barbara Keeley]

I would like to think so, but I am not going to hold my breath. I think I am a lot more pessimistic than the hon. Lady. Indeed, we know that some GPs have been so alarmed that they want to opt their patients out of the scheme. They should be able to do that without penalty. It is up to Ministers, NHS England and HSCIC to rebuild that confidence, but they are not doing so at the moment. They seem to see what is going wrong as a communication or public relations problem. It is not a communication or PR problem; it is a very serious problem with regard to the integrity of what they are doing, and a lack of transparency and accountability. We cannot say that enough times.

[Sarah Newton (Truro and Falmouth) (Con)]

I have worked alongside the hon. Lady to try to improve our social care system, so does she not agree that it is important that we work on this issue so that GPs are confident about sharing data? Otherwise, how will we enable the integration of social care with the NHS in the community to give people the sort of care that I know that she and I, through all our work together in Parliament, want to see?

[Barbara Keeley]

Yes, indeed, but I cannot emphasise enough that I do not feel much confidence at the moment and I do not blame GPs for not being confident. They are, in data protection terms, the owners of their patient data. If they do not feel that their concerns have been allayed, we have some way to go. I will touch on that point in a moment.

There are fundamental concerns on how data will be shared and the Government’s amendments do not address them. The amendments would improve Government new clause 34, but broadly it offers no further protection. It seems that data could still be released to commercial bodies, such as private health care companies that are also health insurers, the pharmaceutical industry and private health care providers. We need assurances on that. As far as I can see in this debate, we have not had them.

The Government’s new clause will actually widen the dissemination of information to include the promotion of health. Promotion of health can take in all kinds of commercial companies, for example food and drink companies that say they have a public health campaign. This will cause more problems. It draws the purposes so widely that misuses would still be permitted, and even be given a statutory basis. The requirement that the HSCIC must have regard to the advice of the confidentiality advisory group is still an inadequate protection.

I have added my name to amendments (a) and (b), tabled by the hon. Member for Totnes, because they would narrow the purposes for which data can be disseminated. However, I remain concerned about the commercial exploitation of patient data. I support new clause 25, which highlights the seriousness of the offence of misusing patient data. We need a clear disincentive for institutional abuse of confidential patient data with appropriate penalties including, as the hon. Lady said, imprisonment. Imprisonment is appropriate for the abuse of confidential patient data.

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[Jim Shannon (Strangford) (DUP)]

I was under the illusion that there would be five speakers ahead of me, but I am none the less pleased to make some comments on amendments (a) and (b) to Government new clause 34, and on new clause 25. I thank the hon. Member for Totnes (Dr Wollaston) for setting the scene, and the hon. Member for Worsley and Eccles South (Barbara Keeley) for her contribution.

My inbox, like many others, has been full with messages from various charities on different aspects of the Bill. Having sat on the Care Public Bill Committee, I can well understand many of their concerns. I received a briefing from Cancer Research UK, as many other Members did. It was informative and clear, and raised points that I do not believe have been addressed in the Bill and require greater clarity through amendment.

Along with Cancer Research UK, I warmly welcome the clauses that will introduce the Health Research Authority as a non-departmental government body. I have the highest respect for the Minister, but last night clarity on this was sought by the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham), the hon. Members for Easington (Grahame M. Morris) and for Worsley and Eccles South (Barbara Keeley) and me. With respect, I do not think that Hansard gives the clarification that right hon. and hon. Members, Cancer Research UK and Macmillan are seeking. I am hopeful that the Minister will today be able to give us that assurance and clarity.

Clarification of the amendment of section 261 of the Health and Social Care Act 2012 is needed to ensure that access to data for research is not restricted on the basis of the amendment. Cancer Research UK states:

“While we appreciate the context of this amendment and understand that the motive behind it is to avoid inappropriate disclosures of data, we are concerned that the wording of this is unclear. We would like reassurance that access to data for researchers is included under ‘provision of health care and adult social care’ and that access to research data will not be restricted on the basis of this amendment.”

I hope the Minister will be able to provide assurance on that.

Cancer Research UK is one of the largest funders of clinical research in the United Kingdom of Great Britain and Northern Ireland. It is currently running more than 240 clinical trials, which in 2012 recruited some 37,000 patients. Clinical research is important to find drugs that work and treatment that saves lives. Today in Westminster Hall, we were made aware that with better access to new cancer drugs, 5,000 more people would be alive today and that many more lives could be saved. It is essential that we develop an understanding of both new and existing treatments, and that they are offered through the NHS. We therefore want to see a regulation and governance system in the NHS that promotes and supports research, while also protecting patients.

There has been significant controversy surrounding the proposed care data upload of GP records to the Health and Social Care Information Centre and there have been at least two debates in Westminster Hall on these issues where Members have expressed their concerns strongly. Concerns have been expressed that the public have been insufficiently informed about this upload and that data may be released inappropriately, for example to insurance or marketing companies. I know the Minister replied last night to my intervention, but the doubt lingers even today within Cancer Research UK, Macmillan Care and other charities that had expressed initial concerns. I have concerns regarding the nature of the release, but it was never my intention to restrict data going to the likes of Macmillan or Cancer Research UK to aid in their fight against the scourge of cancer.

[Barbara Keeley]

I read a blog article this morning written from the point of view of people with disabilities who had real concerns about the mention of insurance providers. It is often very difficult for people with serious conditions to get insurance, even travel insurance, and the notion that their medical data are being linked to insurance information, or might be sold in future to companies that are insurance providers—even if those are health and social care providers—is a real worry for them. They are really fearful about this and I think we would see a mass opt-out by people who have that fear.

[Jim Shannon]

That is the issue, summed up in a couple of sentences. The Minister may look to his civil servants for some direction; he may have it already. If so, that is good news.

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[Sarah Newton]

The hon. Gentleman has given yet another reason for the importance of collecting and sharing data in a way that helps to improve health outcomes. A further example is an inquiry into medical implants that was conducted by the Science and Technology Committee. Orthopaedic surgeons were able to keep a great many data relating to the types of implants used in, for instance, hip replacements, and to track, over time, the outcomes for the patients. As a result of that research, they were able to identify particularly problematic implants, and the information was shared among clinicians so that they could improve existing implants and develop new ones. Hip replacements have improved greatly as a result. It is vital that we establish frameworks that give confidence to patients and to medical practitioners, so that such information can be collected and used to improve patient outcomes.

[Barbara Keeley]

The hon. Lady clearly supports such uses of the databases, but, as I said earlier, there is concern about the fact that this is going global. There are memorandums of understanding between countries, and the granting of access to one organisation seems to lead to its being granted to others. The whole thing could easily spiral out of control. Does the hon. Lady share that concern? I do not know whether her inquiry established any way of describing the system that would enable people to understand it and have confidence in it.

[Sarah Newton]

In many of our inquiries, we have looked into international collaborations between universities that are tackling some of the greatest challenges of our time. One example is research into various forms of dementia, and proteins in the brain that contribute not only to vascular dementia, but even to vCJD. We have concluded that in order to meet the huge challenges that those diseases pose to the whole world, we need to pool our resources across universities and research communities internationally. There is an increasing number of well-established protocols and sensible ways of reassuring patients and others about the use of their data. Such international collaboration makes it more likely that we can make discoveries that will drive improvements in people’s outcomes.

Frameworks and safeguards exist to enable universities and academics to collaborate. We should be careful about the language that we use in this context, because there has been scaremongering, and people are identifying all sorts of potential uses for the data for which there is not much evidence. We have been reassured several times today that the information would not fall into the hands of insurance companies and be used in a harmful way.

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[Mr Stephen Dorrell (Charnwood) (Con)]

Mr Speaker, I take your rap across the knuckles in the spirit in which it was intended. I apologise to the House for being late today, due to a diary conflict. I hope I can claim that I do not arrive, speak and then disappear very often. My practice is to be here for a debate and to contribute and listen to it, and I apologise to the House for not matching that standard in this debate.

I am, however, grateful for the opportunity to speak in this debate, because a discussion about the way in which the health service handles data and introduces a culture that allows a freer exchange of data around the health and care system is fundamental to the delivery of more joined-up services—ultimately between the NHS and the social care sector—which is an objective that is espoused widely, and regularly repeated, in this House.

The Select Committee had a session at which NHS England gave evidence about the position it got to with care.data and the delay that was announced two or three weeks ago. Although there is a widespread view within the Select Committee that it is important to get better at handling data in order to allow the delivery of improved services, we also had a sense that NHS England, in its handling of the care.data programme, had not respected sufficiently the sensitivities both of individual GPs, as the hon. Member for Easington (Grahame M. Morris) was saying, and—more importantly, ultimately—of individual patients about the safeguards that apply to their data and the uses to which those data can be put.

I agree with the hon. Gentleman that it is important that the six months of additional breathing space NHS England has given itself is used to address those concerns, both within the service and among patient groups, about security of data and the safeguards in respect of which data are used as a result of a more open—in the correct sense of that word—use of data around the system.

[Barbara Keeley]

As the right hon. Gentleman was not here at the time, he will not know that I moved a manuscript amendment on better parliamentary oversight of the Health and Social Care Information Centre. It seemed to me—I wonder if he noticed this, too, in our Committee inquiry—that there were a great many individuals making decisions on key issues. Questions were put to the HSCIC about the pseudonymisation of data at source, yet the answer we got back was, “Well, I’ve looked at that, and I don’t support it.” The comments were all a bit “I”, but I would like a bit more of the “We” in oversight, and not so much of the “I”.

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[Mr Dorrell]

First, we must concentrate the rationale for the programme on to patients. Looking back at how NHS England has got itself into this position over the past few weeks and months, I have lost count of the number of times I have been told how important the programme is for research. I absolutely agree that it is important for research, but the health and care system does not exist to support research; it exists to treat and care for patients. The logic of allowing commissioners to develop joined-up services that respond to individual people’s needs—and the pattern of need based on multi-morbidity to which the right hon. Member for Sutton and Cheam (Paul Burstow) has referred—must be placed centre stage in the justification for the improved handling of data in the health and care system.

I go back to the point that this must be about treating people, not conditions. We cannot achieve that if we do not have the information to allow us to connect up the experience of the patient between one part of the system and another. In regard to the logic behind NHS England’s plans, yes there is a research argument, but—with apologies to the research scientists—it is a secondary argument. The primary argument is that we must improve the services delivered to patients and service users.

[Barbara Keeley]

The hon. Member for Oxford West and Abingdon (Nicola Blackwood) has just mentioned the need to reassure patients; that is a big concern at the moment. I have here the transcript of the information I was given in the Health Committee, in which Max Jones of the HSCIC said of the care.data programme that the GP extraction services

“took great care to make sure that we only extract the coded information in those records and not the free text notes”.

However, the hon. Member for Totnes (Dr Wollaston) said earlier that there had been discussions in HSCIC meetings about extracting free text data. Is the right hon. Gentleman as alarmed as I was to hear that? Does he agree that, in the light of the need for reassurance, we do not need such revelations, news and other bits and pieces coming at us from every direction every day to make the whole fiasco worse?

[Mr Dorrell]

I am not going to comment on whether the free text data should or should not be part of the system, or on whether the safeguards are adequate. However, I agree with the hon. Lady absolutely that the one sure way of undermining public confidence in safeguards is to change those safeguards every five minutes according to whichever witness we are listening to.

--- Later in debate ---

Trust was damaged further when the Secretary of State claimed, incorrectly, that every house in the country had received a leaflet on care.data, informing them of the project, its purpose and how individuals could opt out if they wanted to. That is not true. A freedom of information request has revealed that NHS England did not ask for the leaflet to be classified as in “in exceptional circumstances”, so the leaflet has not been delivered to households registered with the Royal Mail’s door-to-door opt-out.

[Barbara Keeley]

My hon. Friend is making a good speech and laying out the issues clearly—he is talking about the junk mail leaflet that was not delivered to every household. It also did not have an opt-out form. As a member of the Health Committee, however, I am still getting queries from people who fear that even after opt-out data will still leave their GP practice to be used by HSCIC. Do we need to be assured about that as well?

[Mr Reed]

Absolutely. That is one of the real issues. As we have heard from Members on both sides of the House, absolute clarity is needed on such issues and on the data, which we as individuals own, from those who seek to provide that data to other people for other purposes. This goes to the heart of the matter, and the fundamental issue—that fundamental breach—is one of trust. My hon. Friend is absolutely right to raise that.

Trust can never be given with blind faith, but it can be built if it is based on accountability. That is what new clause 25 and amendment 29 seek to achieve. The new clause seeks to create a new, specific offence of the misuse of data provided by the HSCIC. Building on the schedule of offences in the Data Protection Act 1998, it makes it an offence to use data provided by the HSCIC for the purposes of re-identification. A person or organisation found guilty of that offence would be subject to an unlimited fine. In addition, it makes it a requirement for any organisation making applications for data from the HSCIC to disclose any previous convictions under the offence.

The purpose of the new clause is to help build public confidence in how individual patient data are used by ensuring that any person or entity who misuses the data is liable to significant criminal sanctions. Patients can then be assured that their privacy and the proper use of their medical data are of the utmost importance to Parliament, the judiciary and the NHS. The new clause would also place a duty on those convicted of misusing data to declare that conviction when reapplying for future data. In reality, barring some unforeseeable public interest, those guilty of misusing data once would be unlikely to gain access again.

In order to ensure a robust system, accountability for the use of the data must also cover those who grant permission for the data to be used. Clause 116 removes from the Secretary of State the duty to approve applications to use patient data for medical research. That is wholly and entirely wrong, and amendment 29 seeks to restore that duty.

In light of the letter from the Chair of the Health Committee to the Health Secretary, the emerging details of how patient data have been used and the rather strange pronouncement from the HSCIC that it will not say more about improper release of medical records until “later in the year”, the Secretary of State’s accountability for how patient data are used is absolutely critical. The use of patient data is a matter of huge import, and the issues surrounding it are enormous, too.

--- Later in debate ---

[Dr Poulter]

Of course strict criteria are in place under the 2012 Act about the use of data where a patient could be identified. The Health and Social Care Information Centre cannot randomly release data that would identify patients, except where there are specific public policy reasons for doing so, such as in the event of a flu pandemic or a public emergency. There are strong safeguards in place under that legislation to protect patient data. It would be wrong of the hon. Gentleman—I know he often inadvertently misleads himself in some of his conclusions and goes around in circles in his remarks—to confuse Members and to confuse the House. The legislation is clear. He has been in many debates on the matter over the past few weeks, and strong protections are in place to protect patient confidentiality and to prevent patients from being inappropriately identified.

I do not want to be drawn into individual cases, but the hon. Member for Worsley and Eccles South also raised the issue of the MedRed BT Health Cloud, which will provide public access in the United States to 50 million de-identified patient records from the Health and Social Care Information Centre in the UK. We have clarified the matter. The data referred to are not confidential, but are published anonymous data of the aggregate population—not at patient level. The data are available freely to any member of the public or organisation via data.gov.uk. There is no conspiracy about the data; they are freely available to any one of us in this Chamber or to any member of the public.

It is worth highlighting the powers of the Secretary of State, which the shadow Minister also raised in his comments. Let me reassure the hon. Member for Worsley and Eccles South in respect of the amendment that she has tabled today. Section 245 of the 2012 Act enables the Secretary of State to direct the Health and Social Care Information Centre to establish information systems—to collect data—including systems on how to carry out that collection.

The Secretary of State can also direct the Health and Social Care Information Centre to report on any matter about its functions. If concerns were raised about the issue of free text data, which my hon. Friend the Member for Totnes mentioned, the Secretary of State could pass on directions to the Health and Social Care Information Centre.

[Barbara Keeley]

The Minister referred to my manuscript amendment on parliamentary oversight of the actions of the HSCIC. I tabled that amendment late because there is a belief that the Secretary of State and the Minister have not been asking the right questions. It has taken the Health Committee and other Members making inquiries to bring out all the issues. We need to keep on doing that, which is why I tabled that important amendment. There was not time to do it in a timely way, but that is why it was done.

[Dr Poulter]

As a Member of the previous Government, it is a pity that the hon. Lady did not take these issues more seriously at the time. It has been left to the current Government to fix the problem through the 2012 Act and the amendments that we have tabled today. That is not good enough and she knows it. It is also the case that she has not read the 2012 Act properly, because I have just outlined the section 245 powers that the Secretary of State has. That is parliamentary oversight in anyone’s terms.

Finally, let me turn to amendment 29 tabled by the hon. Member for Copeland (Mr Reed). As he has said:

“The importance of such data in medical research, and in the synthesis of new treatments and better care, cannot be overstated. In research terms, more information about how people with certain conditions react to treatments can led to better research being undertaken, which uses resources more efficiently and improves a patient’s quality of life.” ––[Official Report, Care [Lords] Public Bill Committee, 30 January 2014; c. 513.]

I completely agree with that. It is important that we uphold a person’s right to confidentiality while enabling the use of information to improve the current and future health and care of the population, with appropriate safeguards to protect confidentiality.

The Health Service (Control of Patient Information) Regulations 2002 made under section 251 of the National Health Service Act 2006 modify the common law obligations of confidentiality. It allows researchers, public health staff and other medical practitioners to access information where there is no reasonably practicable way of obtaining consent to use such information for the purposes of medical research. That is in the interests of improving patient care or in the public interest.

Amendment 29 requires the Secretary State to give approval for the processing of confidential patient information for research purposes. In January 2011, the Academy of Medical Sciences published a review of the regulation and governance of health research. It criticised the complexity of the arrangements for regulating the use of patient information, saying that they are a significant barrier to research. None of us in this House wishes to put barriers in the way of medical research. The Secretary of State has already delegated the function of the approval of processing confidential patient information for research purposes to the existing Health Research Authority special health authority. The 2002 regulations as amended by this Bill would give the new HRA this function directly.

Under this Bill, the HRA would be responsible for overseeing the ethical review of health and adult social care research. As access to patient information may involve the consideration of ethical issues, it makes sense for the HRA to make decisions on applications for access to confidential patient information for research purposes.

Robust legislative safeguards ensure approval for access to patient information for research purposes is given appropriately by the HRA. These include a condition that the HRA may approve processing of patient information for research purposes only if approval has been given by a research ethics committee, established or recognised by the HRA, and a requirement that the new HRA appoints an independent committee to provide advice on applications to process patient information. This provides continuity for the committee known as the confidentiality advisory group, which I spoke about earlier in my opening remarks.

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[Andy Burnham]

If the Minister gave councils budgets that enabled them to be more generous, they might have a chance, but drastic cuts mean that they cannot provide care that is worthy of the name. He will know of the fears of organisations that represent disabled adults of working age. The Royal National Institute of Blind People, for instance, fears that the move to retrench eligibility criteria to cover only substantial and critical needs will remove care from people with moderate needs whose support currently enables them to continue to work.

[Barbara Keeley]

I understand that the Minister is to visit Salford tomorrow. Perhaps he would like to talk to Salford city council, whose budget has been cut by £100 million over the last three years, about how it might be more generous. I am glad that my right hon. Friend has mentioned carers and their new rights, but how hollow do those new rights seem to carers in Salford, given that 1,000 people will lose their care packages this year and 400 will not qualify for them? That is a direct result of what the Government have done.

Care Bill [Lords]

Baroness Keeley Excerpts

Monday 10th March 2014 Commons Chamber

[Paul Burstow]

Organisations that have supported the new clause, which I have drafted, include people with a legal background, social workers, Age UK and Mencap—those who often provide a voice for the voiceless. One of my concerns is that the people whom the Bill seeks to benefit are very likely to be those who are under duress and therefore unlikely or unable to express an opinion. That is why the new clause has been crafted to try to ensure that the necessary safeguards are built in.

New clause 3 addresses the issue of carers, particularly the identification of carers. Carers are the backbone of our care and support systems. Without them, those systems could not function in delivering the quality of care that we would expect. Those carers make huge sacrifices to care for their loved ones. Their health, their wealth and their lives are often sacrificed as a result of what they do. We know from the census that a carer is twice as likely to be in bad health as a non-carer.

The Government should be applauded for the fact that in this Bill and in the Children and Families Bill they have taken great strides to improve the rights of adult carers, parent carers, and young carers. They have listened, engaged and responded to the concerns that Members in all parts of this House and in the other place, and many carers’ organisations, have raised with them. However, all this hinges on whether carers are aware of these new rights and whether their council is successful in its new duty of identifying them, as required under the Bill. The problem is that the NHS is still left untouched. Millions of people caring for someone with a health problem may never come into contact with their council or be aware that that would be the next step in coping with their situation.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I welcome the right hon. Gentleman’s conversion to the identification of carers by NHS bodies, because when he was in the role of Minister he did not support that. I hope that he can convert the current Minister. Is it not the case that, as Macmillan Cancer Support has said, 95% of carers for people with cancer, who may care for only a short time but for people with terminal illness, do not have any contact with local government and do not have a carers’ assessment, and is not that the key? Are we just going to let those people struggling in those difficult circumstances carry on doing so?

[Paul Burstow]

The hon. Lady is not a convert. She has been consistent and clear in her pursuit of this provision, both with her own Government and with this Government, and I hope that eventually her persistence will pay off. It has persuaded me, along with many carers’ organisations, of the need for such a change.

Institutionally, the NHS is not good at grasping the different responsibilities it has towards carers compared with those who are its immediate concern—the patients. As a result, it lets carers down institutionally, and that is what the new clause says we need to address. We need to change the NHS’s mindset institutionally to make sure that it recognises its responsibility for millions of people with caring responsibilities and asks the necessary questions. Macmillan Cancer Support has found that 78% of health care professionals have come across a cancer patient who has been admitted because their carer could not cope at home. Here is why the NHS must fully engage with carers: only one in three professionals who sees an accompanied patient always goes on to check whether the person with them is their carer.

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[Mr Ward]

I will try to hit my five-minute target by excluding a lot of other comments, including on the eligibility criteria, which I have spoken about at length on other occasions.

The shadow Minister, the hon. Member for Leicester West (Liz Kendall) effectively made the case about the false economy, whereby the criteria are at the wrong level and people’s conditions deteriorate, so they and the state face a greater cost. My right hon. Friend the Member for Sutton and Cheam (Paul Burstow) referred to the provision to identify patients who are or may become carers. I am concerned about carers who end up becoming patients or needing care because of a lack of support. We need to consider that, too.

I will confine my comments to new clauses 7 and 9. Without those, the rest is almost irrelevant. My right hon. Friend referred to the elephant in the room. An elephant in the room is something we are vaguely aware of; we know it is there but we are not prepared to talk about it. Out there, people are talking about the crucial issue of whether these services can be afforded. So much in the Bill is so good, but we are in danger of casting doubt on the deliverability of what we know is good and on whether it can be implemented.

As is often the case, it is no use relying on the good old principle of localism and local authorities making the decision to pick up these things. There is a difference between localism that is freedom and localism that is an abrogation of responsibility by Government to fund services during a national crisis. If we get that wrong, we will simply give local authorities the freedom to fail. We need to ensure that that does not happen.

The sad thing is that, although there is so much good will out there for the Bill— we are in grave danger of not responding to the comments of the voluntary and community sector and the public sector generally on the principles of the Bill and many of its provisions—there is a suspicion that, at the end of the day, we cannot deliver on it. The question is why would we not support new clauses 7 and 9. We are asking for assurances, not for additional money, because the truth is we do not really know. We are asking for assurances through a review. We are asking not for additional funding but for a commitment to a review.

I was going to give a grand finale about the voyage into the unknown, but it is not unknown, is it? We know that huge demands will be placed on the system and that that will have grave implications for many people who are receiving and providing care. We know that that is on the way. We think we have a system in place through the Bill that will enable us to deliver on that. The big question is not an elephant in the room. The groups that I am working with on the Bradford Cares projects, Age Concern, Mencap, Scope and the Bradford and District Disabled People’s Forum say that this is good and they like so much of the Bill, but they raise their eyebrows and say, “Will the funding be there?” That is the big question that is asked over and again. Through new clauses 7 and 9, we can at least give them some faith that we recognise that it is a big issue and that we are seeking to identify and meet our responsibilities to fund what we all want to do and see.

[Barbara Keeley]

In introducing new clause 3, the right hon. Member for Sutton and Cheam (Paul Burstow) said how he felt that the NHS institutionally must change to identify and support carers. Of course I agree with that. My hon. Friend the Member for Leicester West (Liz Kendall) introduced new clauses 19, 20 and 21. She mentioned my private Member’s Bill, which I feel is having its last outing today in these new clauses; it proposed measures on the identification of carers. I want to touch on how long these issues have been around.

Eleven years ago, I completed a project on identifying and providing support for carers and co-wrote a report on that. The report made recommendations to Government, NHS bodies, GPs and their teams on how important it was to identify and support carers. That project mapped 36 primary care support initiatives for carers run by the Princess Royal Trust for Carers. We are talking about a long time ago. We felt that the role of carers, including their contribution to the work of the NHS, had generally been under-recognised and under-valued.

Through the 1990s, to the point where I wrote that report, we had carers assessments following the excellent Carers (Recognition and Services) Act 1995, introduced by Malcolm Wicks. That was strengthened by the Carers and Disabled Children Act 2000, which enhanced the carer’s right to an assessment. We even had in 1999 standard 6 of the national service framework for mental health, which said:

“all individuals who provide regular and substantive care for a person on the Care Programme Approach should have an assessment of their caring, physical and mental health needs, repeated on at least an annual basis”.

Even at that point, the Department of Health said that the implementation of the carers’ right to an assessment four years in was

“patchy. Assessments are not always carried out. Some carers are offered very sensitive practical and emotional support. But others receive very little, or no help”.

Fast-forward 15 years to the Care Bill, and carers are still in a similar situation. The identification of carers and referring them to sources of advice and support is still not happening on an adequate scale, and we have had all that legislation and good practice. Carers UK has told us that two thirds of carers that it surveyed said that, although their GP knew they had caring responsibilities, their GP did not give them any extra help. We have heard examples of what that can mean.

Carers week is in June, and we look forward to that. We know that in that week we meet carers at events. There is a common theme: they tell us repeatedly they are not getting advice and information to help them care. They can be carers of people with cancer, carers for people with terminal illness, carers of people with Parkinson’s or of people with dementia. Does the Minister want to start changing that for carers week this year? Does he want to go along to carers week events and have carers start to say to him, “I have been identified by my GP and my GP does recognise my caring role”? I hope he does, because I have heard so many people say how much it would have meant to them and what a difference it would have made to their caring if their GP had recognised it.

Even for conditions such as Parkinson’s, only one in 10 carers has been offered an assessment. These are people who are caring very often more than 50 hours a week, and, as a disease such as Parkinson’s progresses, up to 24 hours a day. They and the people caring for somebody who has had a stroke or who has dementia are the people who really need advice, support and breaks. These are the reasons we must support new clauses 3, 19, 20 and 21.

The Care Bill puts great emphasis on carers assessments rather than on the identification of carers, and I introduced a private Member’s Bill on that in September 2012. The clauses in that Bill, which we see again today, would have ensured that NHS bodies had procedures in place to identify carers and to promote their health and well-being and ensure they receive information and advice. I believe the key reason in identifying carers should be because we have a concern for their health, particularly those with the heaviest caring commitments. That is one in five of all carers, and that is more than 1 million people, which is just too many.

Those caring for more than 50 hours a week are twice as likely to suffer ill health, particularly those caring for a person with dementia or stroke. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) has just talked to us meaningfully and movingly about the impact of that caring role on her family. We want early identification and support for those carers so they can maintain their health and manage and sustain their caring role. I agree with my right hon. Friend that they should be fast-tracked for appointments. As hopefully we move towards integration and, beyond that, whole-person care, local authorities cannot be expected to act alone to identify and support carers.

As has been touched on in this debate, we also have to face the fact that the number of people receiving social care services is shrinking. In Salford this year, because of budget cuts, 1,000 people are going to lose their eligibility for social care services and 400 people who would have become eligible for care will not become eligible. The unpaid carers in those families will be taking on that substantial burden, yet, sadly, the GPs and doctors around them will not identify them, will not help them, will not make sure they get advice and support.

This Care Bill is the place to make the change, and I say to the Minister let us not wait another 15 years to make the change and place such a requirement on health bodies—and schools, universities, colleges and further education colleges in the case of young and student carers. Let them just have policies in place to identify carers and to provide support for them.

[Dr Sarah Wollaston (Totnes) (Con)]

I would like to speak briefly to new clauses 1, 26 and 9. I hope new clause 1 on the adult safeguarding access orders would rarely ever be necessary because, as the Minister knows, the vast majority of carers are out there day in, day out, night after night providing dedicated care, often at the expense of their own health. There is a tiny minority of people, however—and I am afraid I have met some of them—who are coercive, controlling and manipulative, particularly if there is money at stake. At the moment there is no right of entry even if other relatives or neighbours and friends have raised concerns, and even if clinicians have concerns. Of course in most cases a negotiation can take place and access can be gained, but very often that access is only with a rather controlling person in the room as well, and it can be very difficult to make a full assessment of capacity under those circumstances, as I am sure the Minister is aware. There are people who are at risk. We know that 29 local authorities have identified that there have been vulnerable adults for whom they have been unable to gain access.

New clause 1 is about stating that there needs to be a final backstop in circumstances where it is clear that the safeguarding of a vulnerable adult at risk is paramount. I know there are those who say we already have right of access under the Police and Criminal Evidence Act 1984, but unfortunately the bar is set too high and there is uncertainty about the ability to gain access. New clause 1 sets out very clearly the thresholds, and also the safeguards, because this is not about riding roughshod over individuals who do not wish to have a social worker entering their home. Instead it is about setting out the rights of an individual who may be under the control of a coercive third party. We need to have greater clarity and I hope the Minister will consider this new clause. Having a final backstop works well in Scotland; it is very rarely used but we need to have it in place as a final resort.

--- Later in debate ---

[Norman Lamb]

I have already confirmed that we will return to the matter later in the process, and I hope that we will then end up in a satisfactory place.

Turning to new clauses 7 and 9 to which a number of hon. Members have spoken, the spending review considers spending pressures across adult care and support, the NHS and public health. In the current spending review period, we allocated significant additional funding to local authorities for adult care and support, including a transfer from the NHS of £1.l billion a year by 2014-15 to be spent on social care with a health benefit. That is not to say that I do not recognise how challenging the financial environment is for local authorities, but we know from figures provided by the local authorities themselves that the vast majority of cost savings have been achieved as a result of efficiencies and not of cutting services for people.

However, as the hon. Member for Leicester West (Liz Kendall) said in Committee, the answer is not just to throw more money at the system, but to look at how public funding is spent and to deliver a more radical reform of health and social care. That is why, in the spending review for 2015-16, we announced the better care fund, which is a £3.8 billion pooled budget for health and social care. That not only provides the resources needed to protect access to social care, but breaks absolutely new ground in establishing structures that will drive further and faster integration between health and social care.

As hon. Members have noted, the better care fund includes £135 million of additional funding for implementing the Bill in 2015-16. Some have argued that including that in the better care fund means that local authorities will face a choice between implementing the Bill and investing in integrated services. In my view, that is a false choice. On the contrary, our reforms are part of the same agenda, and we cannot afford to see those as separate issues. Both systems need to work more effectively together to help people live independently for longer.

[Barbara Keeley]

rose—

[Norman Lamb]

I am conscious that I owe it to hon. Members to respond to all the issues that have been raised.

The reforms in the Bill to extend assessments and support for carers can play a big part in keeping people out of hospital. The spending review provided £335 million in 2015-16 to help local authorities’ transition to the capped cost system and to offer universal deferred payments. Locally, health and wellbeing boards have a statutory responsibility to analyse current and future health and care needs and to develop a strategy to address them. Given such an approach, there is no need for the proposed amendments.

--- Later in debate ---

[Dr Poulter]

I hope that I have already given the hon. Gentleman some reassurance that the data will have to be used for the benefit of the health and care service, or for the purposes of public health. They are not to be used for insurance purposes, for example. I will go on to outline some of the safeguards involved.

[Barbara Keeley]

Would the Minister like to comment on an announcement made at the launch of the MedRed BT health cloud—a cloud data system that is using our hospital episode statistics data—in the United States? At the launch, it was stated:

“People are using foreign data because it’s available. The UK made some gutsy decisions about data liberation. There’s political risk associated and they have a more tolerant climate over there.”

Will the Minister comment on the fact that we apparently have such a tolerant climate that MedRed and BT are now charging for access to our data on that cloud system in the United States?

[Dr Poulter]

I am not going to be drawn into commenting on an American system. The point is that there are strong safeguards under the 2012 Act to ensure that confidential data can be used only for the benefit of the health and care system. Of course, data that do not identify patients need to be used in a transparent way that can help to drive up care and services.

[Barbara Keeley]

rose—

[Dr Poulter]

I have been generous in giving way to the hon. Lady; I hope that she will let me address her point. It is important that we have data that are open and transparent and that are used to expose the quality of care that is available from different health care providers. We are one year on from the Francis inquiry, and we need open and transparent data in order to understand and compare the quality of care services in hospitals and in different NHS health and care providers. This is about helping us to recognise what good care looks like, so that we can extend it throughout the system. It is also about exposing the few examples of bad care in an open and transparent way. If we had—

[Barbara Keeley]

rose—

[Grahame M. Morris]

rose—

--- Later in debate ---

[Dr Poulter]

It is clear that the information can be used only for the benefit of the health and care service or for the purposes of promoting health. It is about benefits to the NHS or to the health and care system. That is also what the 2012 Act identifies regarding provision of data. Let us not forget that we had to put safeguards in place because at no point did the previous Government place any restrictions on the use of data. Under the previous Government’s regulations, before this Government came to power, there was greater potential for abuse of the system. Although I am sure the previous Government would not have intended data to be used by private health care companies for insurance purposes or by others, less rigid safeguards were in place to prevent that from happening.

This Government, both with the amendments and the 2012 Act, have clearly stipulated that the information can be used only for the benefit of the health and care system or the health service. That is very clear and the previous Government never put such a provision in place. This Government have also given patients an opt-out in the use of data—something the previous Government never properly put in place. We have introduced good provisions about protecting confidentiality and using information in the NHS in a responsible manner. If the previous Government had been concerned about the use of data, they should have put in place more robust safeguards when they were in power, but they did not.

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

No, the hon. Lady has had many interventions; I have been very generous—[Interruption.] I know she does not like hearing about Labour’s record in government on these issues, but I am afraid she needs to. This Government are putting in place safeguards to protect patient confidentiality. The previous Government failed on that agenda, and I am proud that we are able to table these amendments, which will lead to greater reassurance.

The amendments also help to clarify how data can be disseminated to support research for health and care commissioning, health and public health purposes, medical purposes, or other purposes relating to the provision of health care, adult social care or the promotion of health.

Government amendment 8 relates to the remit of the Health Research Authority. It has always been our intention that the HRA’s functions relate to health research and adult social care research, and the amendment clarifies that remit. It makes explicit that the HRA’s functions do not generally extend to research that relates to children’s social care, if that research is solely for the purposes of children’s social care. We must recognise that research may take place across the boundaries between health or adult social care and children’s social care, and the amendment will not inhibit such research. Although the HRA’s functions will not generally extend to children’s social care, the research ethics committees that the HRA establishes or recognises under clauses 113 and 114 will be able to consider children’s social care research in the round when considering a study that also involves health research or adult social care research.

A lot of research crosses health and social care, and some of it involves children. Where such research includes health elements, it already comes to the HRA special health authority for ethical consideration. Many university ethics committees accept HRA ethics committee approval and do not require separate approval by their own ethics committees. That will continue when the HRA becomes a non-departmental public body.

Paragraph 12(5) of schedule 7 gives the HRA a general power to do anything that appears to be necessary or desirable for the purposes of, or in connection with, the exercise of its functions. That power means that HRA can, if it feels it necessary or desirable, publish guidance that relates to children’s social care research where there is also an adult social care element or a health element that falls within the HRA’s remit.

--- Later in debate ---

[Barbara Keeley]

On a point of order, Mr Speaker. I understood that this debate was scrutiny of the remaining stages of an important Bill. The Minister seems to be reading his speech into the record, which for me does not stack up as a debate on the remaining stages of a very important Bill, and an aspect of it—care data—that is crucial to every NHS patient in the country.

[Mr Speaker]

The Minister is certainly in order and there is a continuation of Report stage tomorrow. I am sure he will want to be sensitive to the fact that other Members wish to contribute.

[Grahame M. Morris]

In 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.

[Barbara Keeley]

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.

[Grahame M. Morris]

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.

--- Later in debate ---

[Grahame M. Morris]

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.

[Barbara Keeley]

Will my hon. Friend give way?

[Grahame M. Morris]

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.

[Barbara Keeley]

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.

[Grahame M. Morris]

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.

Francis Report

Baroness Keeley Excerpts

Wednesday 5th March 2014 Commons Chamber

[Andy Burnham]

Pressure on hospitals, and how we relieve it so that they can care for people properly, is the core of this debate. What we have seen under this Government is an ever-increasing number of frail, elderly people coming into hospital via A and E. The Secretary of State shakes his head, but Francis made specific recommendations on the care of older people in hospital. The point I am making is that under him the number of older people admitted to hospitals as emergency admissions has gone up significantly, and that goes to the heart of the issues raised by the Francis report.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

We have an excellent hospital in Salford—it is one of the best in the country—but we also have 1,000 people who are losing their care packages this year. We have pressure on Salford because Trafford has been downgraded and lost its A and E, and we are short of two A and E consultants—even Salford has a problem recruiting A and E consultants. Those are real concerns for people in Salford despite having one of the best hospitals in the country.

[Andy Burnham]

I hope that the Secretary of State was listening to my hon. Friend. The point I was making—he did not like it—was that there is plentiful evidence that the NHS has gone downhill in the 12 months since the publication of the Francis report. The chaos in A and E has increased, and pressure on mental health services has reached almost intolerable levels.

Trusts face great difficulties in recruiting sufficient A and E doctors—a central issue in the Francis report, as it addresses safe staffing numbers.

--- Later in debate ---

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I want to talk about the Francis report, which detailed failures that were a betrayal of NHS values—we have heard repeatedly about those failures in this debate—but before I do so I will speak briefly about NHS change day, which shows so much that is good about the values of the NHS.

This week saw the second NHS change day. It is a front line-led movement, the largest of its kind, with the shared purpose of improving health and care. Its mission is to inspire and mobilise people everywhere—NHS staff, patients and the public—to do something better together to improve care for people. Hon. Members have until 31 March to make pledges for NHS changes, and it may be that Ministers and shadow Ministers will want to adopt some of them. Some inspirational pledges have been made that are making a real difference to care. An example I like is the “Hello, my name is...” campaign by Dr Kate Granger.

In December 2012, Dr Kate Granger was herself an in-patient, and she noticed how infrequently health care professionals introduced themselves. She wrote:

“As a healthcare professional you know so much about your patient. You know their name, their personal details, their health conditions, and much more. What do we as patients know about our healthcare professionals? The answer is often absolutely nothing, sometimes it seems not even their names. The balance of power is very one-sided in favour of the healthcare professional.”

It might seem astonishing that a campaign to encourage health care staff to introduce themselves to patients is needed, but it is an important part of the change in culture that people are trying to bring about.

Some 390,000 pledges have been made for the second NHS change day. It will run to the end of March, so that figure might reach half a million. This is a very good movement inside the NHS to improve care, in addition to the important matters we are discussing today. It is valuable that NHS staff, patients and carers are making pledges to do just that.

It is clear that staffing is one of the most important issues in the Francis report. The report talks about

“a lack of staff, both in terms of absolute numbers and appropriate skills”.

A survey of nurses published by Nursing Times one year on from the Francis report found that more than half those surveyed believed that their wards remained dangerously understaffed. Indeed, 39% of those who responded warned that staffing levels had worsened in the past 12 months. Various numbers have been bandied about during the debate, but that is a key factor. Only 22%—a fifth—of the nurses surveyed reported an improvement. I think it notable that more than half said that their own wards were dangerously understaffed, because that is the same percentage as a year ago. If understaffing was identified as an issue in the Francis report, it is still an issue now.

I believe that one pledge that politicians can make to improve care in the NHS is a pledge to support the Safe Staffing Alliance. The fundamental standard is a ratio of no more than eight patients to one nurse; other key aspects of safe staffing are use of a management tool to work out the safe staffing levels and the publication of staffing levels so that they can be seen by patients and their families. Let me repeat what I have said to Ministers a number of times over the last year, now that they recognise that Salford Royal is an excellent hospital. Salford Royal works out minimum staffing levels with a management tool, and publishes actual versus planned staffing levels on whiteboards on the wards every day. Again and again, we hear about failures in hospitals that, like the failure at Mid Staffordshire, are related to understaffing and the awful position in which it puts nursing staff. In another debate on this subject, the Secretary of State said:

“Salford Royal is one of the best hospitals in the country and we should always learn from what it does”.—[Official Report, 19 November 2013; Vol. 570, c. 1107.]

I hope that he will now start to take his own advice.

People in Salford were thrilled when Salford Royal’s chief executive, David Dalton, was knighted earlier this year. I believe that that was well deserved, because Salford Royal and David Dalton have done a huge amount to improve patient safety and reduce mortality. In its report “After Francis”, the Health Committee said that it had

“been impressed by the approach of Salford Royal NHS Foundation Trust to the development of a staffing management tool. This appears to the Committee to be good practice, and the Committee recommends the adoption of this or similar systems across the NHS.”

Other Members have also mentioned that.

The Health Committee also said—we keep returning to staffing levels—that

“Ensuring adequate levels of both clinically- and non-clinically-qualified staff in all circumstances is therefore a fundamental requirement of high quality care, whatever the financial circumstances.”

As I have said, that is a key point. It is clear to me what should be done to ensure safe staffing levels—we have that excellent example—but it is also clear to me that the Government’s proposal for monthly publication of staffing levels is not adequate. Robert Francis is a convert to the position of the Safe Staffing Alliance and has said that minimum safe staffing levels should be drawn up by the National Institute for Health and Clinical Excellence and policed by the Care Quality Commission. He did not say that in his report, but he has subsequently said it to the CQC.

As we heard earlier in the debate, the Francis report was published as the Government’s NHS reforms took effect. It is clear that the structural changes involved in their unnecessary top-down reorganisation have caused upheaval and created new problems. Many Members have talked about restructuring decisions today. Those decisions are proving impossible to implement in many parts of the country, because there is no one really in charge. The chair of the British Medical Association, Dr Mark Porter, made that point earlier this year. Reorganisation costs are another problem, because they have taken money away from patient care. Change of that kind has not improved care in the NHS and has worked against the recommendations of the Francis report. As we heard earlier, the findings of surveys identify the problems that have been caused: seven out of 10 NHS staff members think that the Government’s reorganisation has had a negative impact on patient care, while only 3% think that it has improved patient care. That is a vote against what the Government have done.

Nothing makes the impact of the reforms clearer than the deteriorating performance of A and E departments and the crisis in recruitment to them. It is interesting to note the Public Accounts Committee report this week, which is in a very similar vein to that of the Health Committee. We know that more patients are waiting in A and E departments for longer than four hours: last year the figure was 1 million, whereas in 2009-10 it was only 345,000. The numbers speak for themselves. We know, too, that emergency admissions have increased by 51% in the past decade, with a 26% rise in admissions of over-85s in four years. That is serious: the biggest cause of pressure on local A and E services is the rising number of frail and older people with multiple long-term conditions.

Some Members have questioned the relevance of this to the Francis report, saying we should not be discussing all these issues, but I disagree. If we are concerned about safety and mortality rates, what happens on admission to A and E is a key factor. The consequences if things start going wrong was well understood by Salford Royal hospital: more people were dying unnecessarily at the weekends because of a lack of consultant cover, so the hospital changed that. Work on safety does not ignore what is going on in A and E or how much consultant cover there is; instead, it takes that into account and does something about it.

I am concerned that the number of frail older people attending A and E will continue to increase and that that situation will worsen as a result of continued cuts to social care budgets. We had a warning about that from Sandie Keene, director of the Association of Directors of Adult Social Services. She said

“it is absolutely clear that all the ingenuity and skill that we have brought to cushioning vulnerable people as far as possible from the effects of the economic circumstances cannot be stretched any further, and that some of the people we have responsibilities for may be affected by serious reductions in service—with more in the pipeline over the next two years.”

Unfortunately, excellent though our local hospital is, we are facing a situation where 1,000 people will lose their care packages this year, and I am very concerned about that.

[Jim Shannon]

The Francis report makes some recommendations on mental health, which is in the social care category. One of those suggestions was the training of family members to look after those with mental health conditions better at home, so as to improve their quality of life and help rehabilitate them. I do not see much of that in the report. Would the hon. Lady like there to be more emphasis on family members who are under pressure and are helping others with mental health conditions at home?

[Barbara Keeley]

Indeed, and our most recent inquiries in the Health Committee are about mental health issues. There is a series of issues that need to be looked at. It is rare in a health debate for me not to mention carers. We need to be realistic about the fact that we are now putting a huge amount of pressure on those carers. Removing social care packages will affect our local hospital, but it will also affect those family members, because in the end who is the person who cares? It is the family member to whom the role falls.

To conclude the point about staffing issues in A and E, we found in our earlier inquiry that fewer than one in five emergency departments were able to provide consultant cover for 16 hours a day during the working week, and the figure is lower at weekends. The whole issue of mortality rates is very much linked to that, and we cannot ignore it. We must keep focusing on the problem with recruitment and the lack of consultant cover.

My right hon. Friend the shadow Health Secretary referred to the warnings by the president of the College of Emergency Medicine. During the time when the college was warning about these issues, Ministers were tied up in knots by the challenges of reorganisation. That is key. Ministers have insisted that they are acting now, but it is clear that those warnings from the CEM in 2010 did not get enough attention until recently. The staffing situation can hardly improve when so few higher trainee posts in emergency medicine are being filled. In the latest recruitment round, 156 out of 193 higher trainee emergency medicine posts went unfilled.

My final point is about the difficulties caused by the cost of the NHS reorganisation reforms. In the past few months the spotlight has fallen on unnecessary spending and waste. We all should be concerned about that. We know that emergency departments are spending £120 million a year on locums, and this could be getting worse. The Health Committee has also recently focused on redundancy costs, which have absorbed £1.4 billion of NHS funding since 2010, with £435 million attributed just to restructuring costs. The scandal of the scale of redundancy payments to NHS staff was made worse when we found out that such a revolving door was in operation. The Health Committee was told that of 19,100 people made redundant by the NHS, 3,200 were subsequently rehired by the NHS, including 2,500 rehired within a year and more than 400 rehired within 28 days. There were reports of payments of £605,000 made to an NHS executive whose husband also received a £345,000 pay-off, with both reported to have been subsequently rehired elsewhere in the NHS. That is a scandal. I know that the Minister said it would not happen again, but that is £1 million that could have been spent on patient care.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

Will the hon. Lady give way?

[Barbara Keeley]

I would prefer not to. That money could and should have been spent on improving staffing, particularly nursing staffing. Those patients and family members who have been let down by NHS failures, of which we have heard innumerable examples, deserve to know that everything possible is being done to avoid such failures in future.

Of all the things I have talked about, safe staffing is crucial, as is transparency and staffing ratios. We increasingly have to take on board the fact that there is a funding gap in both the NHS and social care. Indeed, the chair of the British Medical Association said in his new year statement that the funding gap in the NHS is so bad that if the NHS was a country, it would not have even have a credit rating. That is what we are facing.

[Alun Cairns]

Will the hon. Lady give way?

[Barbara Keeley]

No, I do not have time.

Given that situation, we have to learn that precious NHS resources cannot be wasted on reorganisation and redundancies any more, particularly where staff are being rehired. The NHS will reach its 70th birthday in 2018, so let us hope that all the measures we are talking about today, and the implementation of whole-person care under a Labour Government, will help it be in better shape.

--- Later in debate ---

[Kevin Barron (Rother Valley) (Lab)]

I reread the executive summary of the Francis report yesterday when I was on a train journey, and I decided that in today’s debate I would like to look at one of the most crucial aspects of his findings in respect of what happened at Mid Staffs.

On page 62, at paragraph 1.102, the summary states:

“The senior officials in the DH have accepted it has responsibility for the stewardship of the NHS and in that sense that it bears some responsibility for the failure of the healthcare system to detect and prevent the deficiencies at Mid Staffordshire sooner than it did. There is no doubt about the authenticity of their expressions of shock at the appalling story that has emerged from Mid Staffordshire. However, it is not possible to avoid the impression that it lacks a sufficient unifying theme and direction, with regard to patient safety, to move forward from this point in spite of the recent reforms put in place by the current Government.”

It goes on to say:

“Where there are perceived deficiencies, it is tempting to change the system rather than to analyse what needs to change, whether it be leadership, personnel, a definition of standards or, most importantly, culture. System or structural change is not only destabilising but it can be counterproductive in giving the appearance of addressing concerns rapidly while in fact doing nothing about the really difficult issues which will require long-term consistent management. While the DH asserted the importance of quality of care and patient safety in its documentation and its policies, it failed to recognise that the structural reorganisations imposed upon trusts, PCTs and SHAs implementing such policy have on occasion made such a focus very difficult in practice.”

It is my contention that we could probably say that of every reorganisation of the NHS, certainly in my three decades in politics.

The summary goes on to discuss the lessons learned and related key recommendations:

“The negative aspects of culture in the system were identified as including: a lack of openness to criticism; a lack of consideration for patients; defensiveness; looking inwards not outwards; secrecy; misplaced assumptions about the judgements and actions of others; an acceptance of poor standards; a failure to put the patient first in everything that is done.”

It goes on:

“It cannot be suggested that all these characteristics are present everywhere in the system all of the time, far from it, but their existence anywhere means that there is an insufficiently shared positive culture.”

Again, it is my contention that that sums up not just the past 30 years but perhaps the past 60 years of our national health service.

The summary goes on to say that achieving change

“does not require radical reorganisation but re-emphasis of what is truly important”.

All parties in the House should recognise that it is not the reorganisation but the re-emphasis of what is important that is significant. Paragraph 1.119 lists how that can be achieved:

“Emphasis on and commitment to common values throughout the system by all within it; readily accessible fundamental standards and means of compliance; no tolerance of non compliance and the rigorous policing of fundamental standards; openness, transparency and candour in all the system’s business; strong leadership in nursing and other professional values; strong support for leadership roles; a level playing field for accountability; information accessible and useable by all allowing effective comparison of performance by individuals, services and organisation.”

I was not surprised by any of that.

The right hon. Member for Sutton and Cheam (Paul Burstow) was a member of the Select Committee on Health in the previous Parliament between 2005 and 2010, and I had the privilege of chairing that Committee. In 2009 the Committee looked at patient safety in the NHS. We visited one of only four hospitals that were part of a patient safety project on how to look after patients inside hospitals, never mind outside. We looked at some of the major issues at the time, such as how different parts of the NHS interacted and their failure to communicate with one another properly. Much of the time they were working with different regulations, and occasionally the inspectorate was not sure what it was responsible for inspecting. This whole restructuring has been going on for a very long time, and it has been more confusing to people working inside.

I am pleased with how the Government have reacted to some of the Francis report’s main recommendations, but I take issue with them on one point. If we are to change the culture inside the NHS, we really need to look at the duty of candour. The Government have accepted the report’s recommendation on a duty of candour for organisations, but they have rejected the recommendation to extend that duty to individuals. I think that is fundamentally wrong.

I spent nine years as a lay member of the General Medical Council, which regulates doctors, and for the first few years I would sit on fitness-to-practise committees. I think that the only way we shall get change is if individuals have responsibility for the duty of candour, not just organisations. I believe that the Government have got that fundamentally wrong. If they really want to tackle the issues that led to the awful situation at Mid Staffs, they need that duty of candour to extend to individuals.

On the Government’s decision on the duty of candour, the Patients Association has stated:

“We question that if individuals are not already motivated by their own professional code, how will a duty on their employer encourage them to come forward?”

That is absolutely right. It continued:

“Without this fundamental change within the NHS, the Duty will just be providing lip service to the issue of patient safety and patients will struggle to see any real improvements.”

That is a big assumption, but on balance I agree. It is something that the Government, no matter who is in Richmond House, need to tackle throughout the NHS.

I have in my hand a copy of the Health Committee’s report on patient safety, which was published in July 2009. We looked at patient safety across the health care system and compared it with what was happening abroad. We visited New Zealand, which has a comparable health system—I accept that the country has only 4 million occupants, compared with our 60-odd million. We looked at why the culture here is the way it is, why people are not open and why they do not learn from mistakes that other health professionals have made. Often those mistakes are not reported because people fear they will get into trouble. We took evidence from the British Airline Pilots Association and learned that any mistake a pilot makes in an aeroplane is whizzed around the world so that other pilots understand it and learn the lessons immediately. That is not the case in our health service.

I want to mention two of the Committee’s findings from New Zealand. The first relates to investigating complaints. I do not think that leaving the duty of candour to organisations, as the Government suggest, will work well. New Zealand has a statutory body—I have mentioned it before in the House—called the Health and Disability Commissioner, which resolves complaints. People can go to the commissioner to request investigations, and they can do so anonymously if they do not want their colleagues to know about it. It is completely independent of the health care system. It works, and it has been working for many decades.

Another area we looked at in New Zealand—again, I accept that it is a very small country—was compensation and redress. I know from my experience of 30 years in Parliament that when people complain about something that happened to them in their local hospital that they are unhappy about, they are treated as if they are going to get into litigation and that it will cost a lot of money; immediately the barriers come up. That culture is not good for our health service, it is costing massive amounts of money for us as taxpayers, and it is certainly not good for the individual concerned. I do not know how many times I have been told that all the patient wanted was an admission that the hospital got it wrong and an apology; they did not necessarily want money. New Zealand has a redress system that some might call a no-fault liability system. Here, it would mean getting rid of lots of lawyers who make massive amounts of money and careers from public money for NHS litigation. Just those two areas hold back changing what is wrong in our system.

[Barbara Keeley]

I wonder whether my right hon. Friend has had similar cases to a difficult one that I had for months involving someone whose wife died in terrible circumstances at home. He was badly let down by the care she received and he wanted redress. He found that people were happy to have meetings with him and to talk to him, and were sympathetic and supportive, but whenever something was put in writing, it was absolutely dreadful. He was very offended and horrified by everything that was in writing, and that is the chilling effect of lawyers because they checked everything. It ruins the support that can be given after a difficult bereavement and when someone has a real case. Things can be said, but they cannot be written down.

[Kevin Barron]

I agree entirely. The system is defensive and people do not get a satisfactory response, but the lessons are not learned. Issues are not reported for fear of the consequences. The Minister is a doctor. He will know that if as a junior doctor he had seen a senior doctor doing something wrong and had gone public about it, it might have affected his career. Some young doctors’ careers have been affected. That is not good for the system, and it is certainly not good for patients.

I am a wholehearted supporter of the national health service and the way it is funded. There is none better in the world, and we can use it without question. It may be different in different parts of the country, but access to health care in this country is second to none in the world for the whole population as opposed to just those with money. Could it better? Yes, and what the Francis report said was a lesson for all of us, and for the national health service. We should change the culture, but we will not do that with reorganisation or by blaming one another in the Chamber for what is right or wrong. That just feeds the politics of the national health service. We must change the culture by putting the patient first, and after 60-odd years it is about time we did.

Patient Medical Records

Baroness Keeley Excerpts

Tuesday 4th March 2014 Westminster Hall

[Mr Godsiff]

I entirely agree with my hon. Friend and indeed, I will come to that point later. As I said, we have an opportunity in the next six months to try to get the scheme right. If the Government now address the many concerns raised about privacy, consent and the creeping commercialisation of our health service, they have the opportunity to create a scheme that offers enormous benefit to health care and research. However, if they fail to do that and continue to steamroll ahead, ignoring public concern, in six months’ time they will find themselves in precisely the same place as they are now, faced by massive public opposition to a scheme that has the potential to do so much good and to save lives.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

I wonder whether my hon. Friend has noticed an issue that has emerged. NHS England uploaded a vast amount of hospital patient data—188 million records—to Google servers. That was done—we have already heard mention of the firm, Atos—by PA Consulting Group, which lost a Home Office contract a few years ago because of data loss. Does he agree that it appears that NHS England has now lost control of the IT side of the project, and that before we go forward, we need full disclosure of all the uses to date of patient data?

[Mr Godsiff]

My hon. Friend makes a very good point. I hope that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) has taken note of what she said and that the Department will be forthcoming in identifying exactly how much confidential NHS data have been released to private profit-making companies. He might also point out how much income the Government have received from that.

There are a huge number of problems with the existing scheme. I could mention the information leaflets that look more like junk mail and have no opt-out return slip on them, or the fact that data extraction was planned to start before the code of practice on who will be allowed to access the data was completed, or the lack of a clear figure on cost. However, perhaps the most damaging flaw in the whole plan has been the refusal to listen to or to address those concerns when they were raised by doctors and patients. We simply cannot and should not bring in a scheme that lacks the consent and approval of the vast majority of people whose confidential health data will be used.

--- Later in debate ---

[Dr Poulter]

My hon. Friend makes an important point. It is also important to highlight that sections 263 to 265 of the 2012 Act put much stronger safeguards in place. Those sections state that processes must be in place in the Health & Social Care Information Centre to ensure confidentiality and to ensure that data are always handled in the right way. The body is responsible for ensuring that those processes are kept up to date and that there are accountability frameworks for those processes. That important step forward was not in place for the previous body.

[Barbara Keeley]

Will the Minister give way?

[Dr Poulter]

I hope the hon. Lady will forgive me, but I want to make progress on some of the points raised in this debate. I will have to be brief any way, and she had a good chance to question me when I appeared before the Select Committee on Health last week. If she feels that she did not have an opportunity to discuss all of the issues, I am sure she will have an opportunity next week when we discuss these matters in our consideration of the Care Bill. Amendments were tabled last night to support some of the issues that we are talking about today. Those amendments will be considered next week, and I am sure those Members who cannot contribute in greater detail today because of the time will be able to contribute much more fully to next week’s debate.

Finally, it is important to talk about driving and supporting integrated, joined-up health and social care across the system, in which we all believe. I know that those Members who are members of the Health Committee believe in that because I remember being a member of that Committee with the hon. Lady and the hon. Member for Easington. If we are to deliver better integrated care, we need to have the right data. One of the key challenges in the past is that we did not collect the data effectively to measure what good integrated care looks like. We know we need to improve the collection of those data, and we want people with long-term conditions such as diabetes, dementia and asthma to be better supported in their own homes and communities. Of course we need to have the data to do that. A lot of those data will come from primary care, and it is important that we put together those data and analyse them to understand what good care looks like. We have not been in the right place to deal with that in the past, but I am confident that we will be in the right place to do it while protecting patient confidentiality with the measures that we are seeking to implement.

[Barbara Keeley]

The point that I wanted to make is in line with what the Minister is saying. Following the revelations about IT issues that I mentioned, and the apology that his colleague the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison) made yesterday to the Commons, will he now agree that it would be sensible for Ministers and NHS England to consider keeping one copy of the care.data database and run staff queries against it, so that it is held in one place and not scattered about on various servers, causing consternation and the need for websites to be taken down, as they were yesterday, because NHS England does not know where the hospital data have gone? The only solution is the one that we discussed last week: keeping one copy and running staff queries against it.

[Dr Poulter]

It is absolutely right that the discussions that we have had in this debate and the issues raised about care.data have been helpful in building on the safeguards in the 2012 Act to improve the processes of the Health & Social Care Information Centre, as a new body, to ensure that it has particular regard to putting strong confidentiality criteria in place. It is also right to keep those criteria under regular review. Obviously, there is regular communication between that body and the Information Commissioner about issues such as protecting confidentiality.

I am sure that we have a robust set of criteria in place under the 2012 Act. It may be helpful to hon. Members if I outline what they are. I reassure the hon. Member for Birmingham, Hall Green that the data are not released for profit. It is about cost recovery when they are. It is also important to say that data are not released in identifiable form without a strong public policy reason: for example, in a civil emergency or some such situation. Data must be used for the benefit of the health and care system. That is a strong set of criteria for use of the data, and strong safeguards are in place. My right hon. Friend the Secretary of State has already put in place an opt-out for patients who do not want to be involved in the process, which has not been the case in the past.

It is important in this context to highlight that we are not taking a sudden, big-bang approach or change to data; this is an evolutionary process. In 1989, in-patient data were collected for the first time; in 2003, out-patient data; in 2007 and 2008, accident and emergency data. That was about improving and driving transparency, developing better care pathways for patients with, for example, chronic obstructive pulmonary disease and ensuring that we better used data to benefit the health service and patients. Now, when it is so important to drive better integration, primary care data will also be collected. That is not a revolutionary change; it is an evolutionary change. What is important is that now, under the 2012 Act, we have much stronger safeguards in place better to protect patient confidentiality and much more rigorous processes under which the Health & Social Care Information Centre, as a new body, will operate, in order to ensure that it regularly reviews its processes and uses data in the right way.

It is also important to say that my right hon. Friend the Secretary of State fully supports and is committed to the principles of the programme, which will alert the NHS where standards drop, enable prompt action to be taken, help staff understand what happens to people, especially those with long-term conditions, and help us develop and improve care. However, in order to reassure hon. Members further and bring greater clarity to some of the issues and discussions, we have tabled some amendments to the Care Bill. We will have an opportunity to discuss them fully next week when we debate the Bill. I am sure that when hon. Members see them, in conjunction with the safeguards already in place under the 2012 Act that were not there before, they will be reassured.

The programme is a good one. It is doing the right thing, improving research, driving up care standards in our NHS and supporting the integration of the health and care system, which we all believe in. It is also protecting patient confidentiality. With those reassurances, I close my remarks. I hope that hon. Members will take the opportunity next week to debate fully any further issues or concerns that they may have. I will bring them the reassurances that they need.

Points of Order

Baroness Keeley Excerpts

Monday 3rd March 2014 Commons Chamber

[Barbara Keeley (Worsley and Eccles South) (Lab)]

On a point of order, Mr Speaker. Last week we learned that insurance actuaries had been able to obtain 13 years of hospital medical records on every NHS patient in the country. A report on the use of the data said that the 188 million records were at individual episode level, and the hospital data obtained had many identifiers, including diagnosis, age, gender, area where the patient lived, date of admission and discharge. On Thursday, in a debate in Westminster Hall, the public health Minister, who is in her place, said that she wanted to put it on the record that the data released to the insurance actuaries were publicly available, non-identifiable and in aggregate form. The Minister’s comments on the data released are at complete variance with the reported facts, which were also discussed extensively at the Health Committee last week. There is now a further damaging story in the news that that released patient data were made available online. I understand that the Health and Social Care Information Centre has today had to ask a company to take down a tool that used that hospital patient data online.

May I ask you, Mr Speaker, whether the public health Minister has sought your permission to correct the record from Thursday’s debate. Furthermore, has the Health Secretary asked to make a statement about NHS patient data being made available online?

[Mr Speaker]

Not at the moment. I can say to the hon. Lady that the public health Minister did indicate to me a willingness to respond to her intended point of order. The Minister is in her place, and we should hear from her now.

Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 25th February 2014 Commons Chamber

[The Minister of State, Department of Health (Norman Lamb)]

I thank my hon. Friend for that question and pay tribute to the agencies in Portsmouth that are coming together to hold the summit and discuss that critical issue. The Prime Minister’s challenge on dementia has made real progress in improving diagnosis rates and the way that society treats dementia, and I would be happy to meet my hon. Friend to discuss the issue further.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

T4. Further to the answer given earlier to my hon. Friend the Member for Wansbeck (Ian Lavery), the lobbyist John Murray and an organisation funded by large pharmaceutical companies led a consultation and co-wrote a report for NHS England on the future of commissioning for £12 billion of NHS services. Will the Secretary of State tell the House whether it is now Government policy to have lobbyists and big drug companies drafting reports that directly influence the commissioning of NHS services?

[Mr Jeremy Hunt]

Let me say this to the hon. Lady: we have very clear rules, and for people who are involved in industry and have a self-interest we have important protections to ensure there is no conflict of interest. Let us be clear: the private sector has an important role to play in the NHS, but it grew far faster under the previous Government than it has done under this one. We are not going to take any lessons about being in hock to the private sector.

NHS

Baroness Keeley Excerpts

Wednesday 5th February 2014 Commons Chamber

[Mr Hunt]

I am afraid that my hon. Friend is absolutely right. Perhaps the situation is put into perspective when we know that those PFI deals are costing the NHS more than £1 billion a year: £1 billion that could have been spent on providing compassionate care and looking after patients with dignity and respect, but instead is having to finance Labour’s appalling mismanaged PFI contracts.

Let me return to the issues raised by the right hon. Member for Leigh. I think that a much more substantive argument relates to the things that he chose not to say. This is the day before the anniversary of the Mid Staffs report, and this is the day on which hospitals are finally putting behind them Labour’s appalling legacy of poor care. We have 14 hospitals in special measures—all of them, incidentally, with A and E departments—making encouraging progress after a very difficult year, with 650 additional nursing staff and 50 board-level replacements between them. Every single one of those hospitals had warning signs under Labour, but rather than sorting out the problems, Labour chose to sweep them under the carpet, sometimes because they had arisen during the run-up to an election. There are 5,900 more clinical staff in the NHS than there were a year ago, and there are 3,300 more hospital nurses than there were at the time of the last election. All those people are vital to the functioning of our A and E departments.

Bullying, harassment and intimidation were perhaps the ugliest features of Labour’s management of the NHS. Now we have seen courageous A and E whistleblower Helene Donnelly being given a new year honour, alongside brave campaigner Julie Bailey, who was literally left out in the cold when she came to lobby the right hon. Member for Leigh about poor care at Mid Staffs.

There is much to do—poor care persists in too many places—but with a new Ofsted-style inspection regime, in England but not in Labour-run Wales, we can at least be confident that poor care in A and E departments and throughout hospitals will be highlighted quickly, and not hidden away. We will keep people out of A and E departments in the first place—that is something to which the right hon. Gentleman referred—with the return of named GPs for the over-75s and integrated health and social care through the better care fund: precisely the joined-up, personal and compassionate care that was envisaged when the NHS was founded 65 years ago.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

Was not one of the key points that Francis made about transparency? The Secretary of State is making claims about staffing numbers which are not recognised. Ministers have had the opportunity to go along with a better scheme of transparency in hospitals, whereby they display every day on the ward their staffing ratios—as Salford Royal does. The Secretary of State will not accept that, however. If he thinks that putting out the totals of staff once a month is an adequate way of dealing with the Francis recommendations, he is fooling himself.

[Mr Hunt]

We on the Government Benches will take absolutely no lessons about transparency in the NHS from Labour after what it did for so many years. I think what we are introducing is a huge step forward, because for the first time every hospital in the country will, as a minimum, have to publish their ward-by-ward staffing ratios every single month. They can publish more—they can do what Salford does—but for every hospital in the country to do that every month is a huge step forward.

--- Later in debate ---

[Grahame M. Morris]

I 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.

[Barbara Keeley]

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.”

--- Later in debate ---

[Paul Burstow (Sutton and Cheam) (LD)]

May I start by agreeing with the right hon. Member for Rother Valley (Kevin Barron)? The issue of alcohol has been ducked by successive Governments for a very long time. He is absolutely right to campaign on it, and I absolutely agree that we need to see the introduction of minimum unit pricing. However, we should not in any way give the impression that that of itself is the entire solution to what is a broad societal problem. None the less, it most certainly would make a significant contribution. I hope that, at the next election, it will be part of my party’s platform on public health issues.

My hon. Friend the Member for Stafford (Jeremy Lefroy) was right to call for a debate on the Francis report. I hope we will be granted Government time to debate it. If not, I would certainly join him in an application to the Backbench Business Committee for a debate on the Floor of the House. We should have the opportunity to bring Ministers here to debate the report.

Before addressing some of the comments made by the shadow Secretary of State, I wish to place on the record my thanks to the staff at my local hospital, St Helier, for all the work they do not just over the winter period when the pressure is undoubtedly at its most acute, but right across the year. Having been in the hospital over the Christmas period singing carols, which hopefully did not discomfort people too much, I saw for myself just how that pressure can build. I also saw how well the staff are perceived by their patients.

I want to register a frustration with the Minister today about something that has been going on in my patch for several years now. For almost as long as I have been an MP, clouds have from time to time gathered over the future of my local hospital. In 2010, the previous Labour Government signed off an outline business case for the rebuild and refurbishment of St Helier’s hospital. That was great news, and a culmination of work by my right hon. Friend the Member for Carshalton and Wallington (Tom Brake), the hon. Member for Mitcham and Morden (Siobhain McDonagh) and me. We secured funding from the Government worth some £219 million. Then there was a change of Government; a coalition came in. Given the spending review and the desire to tackle the public borrowing problem, it was far from certain whether that funding would stay in the Budget. Again, the three of us lobbied hard, and we were delighted when my right hon. Friend the Chief Secretary to the Treasury was able to confirm the funding.

However, in the dying days of the primary care trusts, a review was launched of accident and emergency and maternity services in south-west London. It was called Better Services Better Value, but it offered neither. It has been an absolutely crystal clear case study of everything that is bad and wrong about NHS change management. There are some really good examples of change management, stroke care in London being the exemplar. However, we have to refer to that example too often, as there are too few other really good examples of change having been managed well. All too often the public feel left out of such processes, and it is no wonder they mount the barricades to oppose change of which they feel no ownership.

My right hon. Friend the Member for Carshalton and Wallington and I were repeatedly told during the process by the then chief executive of the primary care trust, Ann Radmore, that the rebuild of St Helier was a fixed point in the whole process. It was not to be touched; it was sacrosanct and the rebuild would happen regardless. I have to say, however, that the events of the past three years have left me feeling betrayed and lied to. As a result of the uncertainty caused by BSBV, three years on—despite GPs having now declared BSBV’s proposals unviable, and having gone back to the drawing board—my local trust and clinical commissioning group are saying they cannot proceed with that £219 million. They lack the will and vision to take it forward, and I hope the Minister can confirm today that the £219 million is still in the Department’s budget lines and that he will encourage my local NHS to work with my local councils and Members of Parliament to bring forward these plans.

The motion moved by the shadow Secretary of State today feels a bit thin, and a little like a re-editing of its previous two incarnations in an attempt to create the sense of a febrile environment of a looming and predicted crisis and calamity that is about to engulf us all. That tactic has been adopted by the Opposition time and again, and time and again it has not been borne out on the ground. The analysis of the right hon. Member for Leigh (Andy Burnham) is deeply political, and let me give just one example. He lays the blame for delayed discharges principally at the door of budget pressures on social service departments. That is not true. If he looks at the figures, he will see that the bulk of the pressure is caused by delayed discharges in the NHS, not social services. I do not pretend for one moment that there are not parts of the country where social service cuts are impacting on delayed discharges, but the picture is more nuanced and complicated, and I wish the shadow Secretary of State had the courage to say that, rather than repeating a uniformly gloomy picture that is not true.

[Barbara Keeley]

I refer the right hon. Gentleman to the Select Committee on Health’s report on the matter. The data were completely conflicted. Again and again, individuals from the NHS told us that social care was the problem, as Sir Bruce Keogh, whom I quoted earlier, said to me just a few weeks ago. Our report said that NHS England should sort this out. There are figures that the right hon. Gentleman could quote and figures that my right hon. Friend the Member for Leigh (Andy Burnham) could quote, and we should not be confused about this.

[Paul Burstow]

I entirely agree that if there is any doubt about the figures, it needs to be resolved, but there seems to be a disconnect between what people think is happening and what the figures show. I have been to events at which clinicians have said that the problem is the local social services, but when they are shown the figures they are surprised. Perhaps that is why we need, as the hon. Lady says, to ensure that there is an agreed way in which such things are reported, which is what, I think, was put in place by the previous Labour Government. These figures have been collected for a long time, and they have consistently shown that social care is not the principal driver of delayed discharges.

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[Barbara Keeley (Worsley and Eccles South) (Lab)]

The Health Committee has held a number of inquiries into urgent and emergency services. The College of Emergency Medicine told us in its evidence that increased demand, combined with a more complex case mix, was the driver that had led to departments struggling to meet the four-hour target. We were told that type 1 emergency departments, which offer a consultant-led 24-hour service with full resuscitation facilities, had

“reached the limits of their compensatory capacity.”

We heard that there were

“more people out of hours, more after midnight, more ambulance and more elderly.”

I checked that with the chief executive of Salford Royal hospital and have checked again in the past 24 hours. He told me that the trends that I first reported in our debate last summer have continued at the hospital. There are now 14 more ambulance arrivals each day—reflecting sicker patients, not self-referrals—which is an increase on last summer. There has been a 13% increase in admissions for stays lasting longer than 72 hours, with a drop in shorter stays, a 31% increase in triages into the hospital’s resuscitation area, and an 11% increase in admissions into critical care. There is now a different mix of patients being admitted. The chief executive, Sir David Dalton, tells me that those trends now appear to be year-round, rather than a purely seasonal impact of winter pressures. He said—my hon. Friend the Member for Stretford and Urmston (Kate Green) might touch on this—that Salford Royal is also now experiencing additional pressures from north Trafford patients.

I am concerned that the current crisis in A and E will continue, and indeed worsen, as a result of continued cuts to social care budgets. We have heard a certain amount of complacency from Ministers today about this winter. It has not yet been a hard one, and there is plenty of time for flu pandemics. Sandie Keene, the president of the Association of Directors of Adult Social Services, has warned that

“it is absolutely clear that all the ingenuity and skill that we have brought to cushioning vulnerable people as far as possible from the effects of the economic circumstances cannot be stretched any further, and that some of the people we have responsibilities for may be affected by serious reductions in service—with more in the pipeline”.

That is the really worrying point, because we are not even at the end of the cuts we have to make.

As I have said before—I make no apology for mentioning it again—my local authority has already lost £100 million in funding since 2010, and it will lose another £75 million by 2016. It has had to cut its adult social care budget by 20%. This is a crunch year for us, because we have had to change our eligibility criteria from “moderate” to “substantial”, which is a difficult cut to make. About 1,000 people are predicted to lose their council-funded care packages, and another 400 who would have qualified under the “moderate” eligibility criteria will not now do so.

The work to reassess those people is ongoing, but Sir David Dalton tells me that

“following the initial scoping there is clearly a risk of more frequent attendances, increased admissions and a prolonged length of stay for this cohort of patients.”

Salford Royal is having to review the possible increased work load for community nursing teams, especially the district nurses, who the chief executive feels

“may need to pick up increased duties for these patients.”

It is clear that there is a straightforward shift: as those people in Salford lose their care packages, the hospital is having to pick it up.

Nationally, the number of people over 65 receiving publicly funded care has fallen from 1.2 million to fewer than 1 million. All across the country there has been a serious fall in the number of older people receiving publicly funded care. Some of those who have lost that care will fund it themselves, but in other cases the work load will fall on unpaid family carers. We have been warned about that in surveys. Carers UK found that 55% of carers are caring for someone who has been admitted to emergency hospital services in the last three years, and a significant number of them said that additional support could have prevented the emergency admission.

We also know—this is a worry for those who are concerned about carers—that full-time carers are themselves more than twice as likely to be in poor health as people without caring responsibilities. The Care Bill has not yet completed its passage through the House, but it does not do enough to support full-time carers, particularly given the funding situation for social care. Carers are the first line in prevention, so properly identifying and supporting them can prevent an escalation in demand. However, identification of carers is not happening and the Care Bill does not do enough to change that.

Macmillan Cancer Support has found that 70% of carers of people with cancer come into contact with health professionals. GPs and hospital doctors should identify carers and signpost them to information and advice, but in many cases they do not. Many hon. Members will encounter such people in their casework. The Care Bill gives a carer a right to a local authority carer’s assessment, but that is meaningless for a carer who has no contact with a local authority. In fact, 1,000 fewer families this year will have that constant contact with, and support from, their local authority.

Carers UK yesterday published a report on caring and family finances, which found that almost half of carers are cutting back on food and heating and that over half have reported that money worries are starting to take a toll on their health. The report quotes one carer:

“With the cuts I have cut down to eating one meal a day so I can ensure my husband has enough food to keep him well.”

We know that the caring that unpaid carers do saves our economy billions of pounds every year, but we have to face the fact that they are choosing between heating and eating, and in some cases eating only one meal a day. As was noted earlier, there is also the lack of funding to pay for prescriptions. Carers UK has warned—we should take note of this—that if this country’s 6.5 million carers are not supported, we will be pushing them to breaking point. In my authority, for example, if they are left unable to care, they will not be able to go to social care and will have to go straight to the NHS.

We know that the NHS is struggling in the wake of unnecessary reforms that redirected £3 billion from the front line. The cost of living crisis is clearly starting to have an impact. This is cold homes week, and it is estimated that people suffering from the cold costs the NHS an extra £1.36 billion a year, and that figure might continue to rise with fuel bills.

Last Friday I met a couple in their 50s who said that they could afford to have their heating on for only an hour a day—last Friday was absolutely freezing, as Thursday had been. It is interesting to reflect on how we could maintain our health if we could afford to have the heating on for only an hour a day. Since 2010, 145,000 more older people have had to receive hospital treatment for cold-related illnesses and respiratory or circulatory diseases, which is a real worry.

On NHS staffing, the Health Committee inquiry highlighted the fact that only one in five emergency departments have the right level of consultant cover for 16 hours a day. That worrying situation is not set to improve because, despite increased recruitment, very few higher trainee posts in emergency medicine are being filled—156 out of 193 such posts were left unfilled in the latest recruitment round. Even Salford Royal, which is an excellent hospital, is experiencing recruitment difficulties. I understand that it still has 2.3 full-time vacant posts, against the eight consultant posts it should have in emergency medicine. That is a good record compared with 52% of posts that are vacant in most hospitals.

As my right hon. Friend the Member for Leigh (Andy Burnham) said earlier, the president of the College of Emergency Medicine feels that we are suffering “decision-making paralysis” across the NHS. The college said recently that it felt that its position was akin to that of

“John the Baptist crying in the wilderness”.

It is a great pity that the warnings it made three years ago about understaffing were overlooked while attention was focused on NHS restructuring. I do not think that the recruitment drive the Secretary of State keeps talking about is the answer, because it will not address the high drop-out rate. We have to recognise that the increasing pressure on A and E will remain a strong disincentive to a career in emergency medicine.

In conclusion, the Government’s unnecessary and costly NHS reforms, combined with the swingeing cuts to social care budgets, are responsible for the crisis, and accident and emergency departments have been left to try to pick up the pieces. I support the motion and urge other Members to do the same.

--- Later in debate ---

[Valerie Vaz (Walsall South) (Lab)]

I am grateful to the hon. Member for Strangford (Jim Shannon) for being so concise in his remarks. It is always a pleasure to follow him.

This debate takes place against a background of confusion and contradiction in the NHS. I hope that we will not end up with a national health disservice. We read all the documents and hear all the announcements about efficiency savings, but we still have not heard the lesson that people and patients should be at the heart of the NHS.

Many of the policy makers in the health service who appeared before the Health Committee warned us that there was not much detail in the lead-up to the Health and Social Care Act 2012. There was no pre-legislative scrutiny and then there was a pause. Not for the first time, the Government rushed to get legislation through without proper scrutiny and without an electoral mandate.

That played into the hands of the people who think that this Government and this country are up for sale to the highest bidder, and that there is no commitment to the people of this country. The Shard is an example. I understand that a number of its floors have been allocated to a private hospital. That is somewhere where pearly kings and queens cannot afford to live—they cannot even afford to go up to see the view.

I am pleased to see a number of my colleagues on the Health Committee in the Chamber. We hear a lot of first-hand evidence. At a time when there are concerns about A and E, the Government seem to be intent on fiddling about with name changes. The NHS Commissioning Board is now known as NHS England. The integration transformation fund is now known as the better care fund. Interestingly, the Chancellor announced in the spending review in July that the £3.8 billion that has been allocated to the integration transformation fund—aka the better care fund—will only be available in 2015-16. However, the problem needs to be addressed now.

That £3.8 billion is not extra money, but money that has been underspent in the NHS over the past few years. The underspend was £2.2 billion in 2013 and £1.4 billion in the previous year. When I asked the Secretary of State on 26 November last year why the underspend was not used for the NHS, he said that I should ask that question of Labour Ministers. I do not know whether he meant that I should do so in 2015. As I pointed out in an aside, which was not picked up by the Official Reporters, I am not a time traveller like Dr Who and was only elected in 2010. The rules of the House say that I should have had a proper response, rather than a dismissive one.

Another issue is that people have been fired and then rehired. One in five of the 19,000 staff who have been given redundancy payments has returned to the NHS. That is more money that has been wasted and that should have been spent on patients. Primary care trusts were disbanded and then re-formed with a different name. Urgent care boards were set up—their name was then changed to working groups—to ensure that there was a forum to replace the PCTs. All of that has strained resources and made staff suffer, without any increase in pay. There is job creation. However, it is not in front-line services, but in the appointment of a chief inspector, which was not suggested by the Francis report, and of assistant chief inspectors. There may well be assistant assistant chief inspectors as well.

The Select Committee heard evidence that the pay policy was significant in enabling the NHS to fill the gap, and NHS England said that, so far, around 25% of efficiency gains had come from pay. Ask A and E doctors who are struggling with working unsocial hours while locums without continuity in patient care are paid more, and they will say, “We need more staff; it is more money wasted on locums and agencies.” Perhaps Ministers should think about golden handcuffs for A and E staff, or the equivalent of an A and E special allowance to recognise the work of those doctors and staff in A and E. That might go some way towards ensuring that we keep them in their place and provide a safe service while doctors are trained. The College of Emergency Medicine has made repeated calls for such measures, and the emergency medicine taskforce made recommendations in 2011, yet we are still waiting for action.

Many Members will know from their own hospitals that patients are suffering from delayed discharge. I have seen that first hand at Manor hospital after the closure of the accident and emergency department at Stafford hospital, where perhaps the relationship with local government is not at the same stage as it is with the local authority in Walsall, for example, and it takes longer to discharge patients. We are still waiting for the £4 million that is needed because we have had to take the strain of the closure at Stafford hospital.

When giving evidence, Sir Bruce Keogh, the NHS medical director, acknowledged that 20% to 25% of people in hospital should have been discharged. The Secretary of State said that himself, having spoken to chief executives of hospitals with approximately two wards full of people who could be discharged. Our House of Commons Library says there have been £1.8 billion of cuts in social care, but apparently, the boffins at NHS England have not “dissected out” why people are in hospital when they do not need to be there. They are working on it now—that serious work on delayed discharges has apparently only just started, despite there being a problem for some time.

The urgent and emergency care review suggested that there should be emergency centres and major emergency centres. Sir Bruce said that NHS England was still listening to that proposal, but in a contradictory view, the Committee was told in the same evidence session that the clinical commissioning groups and other working groups are organising their networks to ensure that that is the outcome. Worse still, it was admitted that they have no intention of stopping any reconfigurations during that review.

[Barbara Keeley]

Will my hon. Friend give way?

[Valerie Vaz]

I am sorry; I have no time. The Secretary of State wants to reconfigure but he does not want a national debate. He gives himself extra powers if he does not like what the courts and local people say. We need that debate. We need to tell people the truth based not on ideology but on fact, because it impacts on the type of medical work undertaken, and on how we train the next generation of doctors, nurses and health care professionals and what specialties there will be.

The Nuffield Trust gave evidence to the Select Committee and said that people have made the easy savings and now they are running out. People’s memories are long. They have paid their taxes and expect the state to look after them when they need it; not to have to show their credit card as soon as they walk into an emergency centre, or a major emergency centre—whatever it will be called. People do not want prime NHS property in the centre of a city to be sold off so that they have to travel further to get to hospitals.

Chaos, confusion, contradiction, and finally, from the Secretary of State an admission. In evidence last December he said that hospitals want to employ another 4,000 nurses compared with a year ago—an admission that 4,000 nurses have gone missing on his watch. The shadow Health Secretary, my right hon. Friend the Member for Leigh (Andy Burnham), made it clear that he does not want a further top-down reorganisation, and he started the conversation about whole-person care in the 21st century in a speech in January last year. Finally, Margaret Mead the anthropologist said:

“Never doubt that a small group of committed citizens can change the world…indeed, it’s the only thing that ever has”

We have in the staff, patients and people of this country a group of citizens who want to save their NHS.

Oral Answers to Questions

Baroness Keeley Excerpts

Tuesday 14th January 2014 Commons Chamber

[Robert Flello (Stoke-on-Trent South) (Lab)]

13. What assessment he has made of the effect of social care budget changes on the number of accident and emergency attendances.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

16. What recent assessment he has made of the effect of social care budget changes on accident and emergency attendances.

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

Although councils have reduced social care budgets, the evidence suggests that this is not having an impact on the NHS. In fact, the data published by NHS England show that councils are getting better at getting people out of hospital at the appropriate time.

--- Later in debate ---

[Dr Poulter]

There is always a lot of political smoke around this, but spending has roughly been flat in cash terms according to the Association of Directors of Adult Social Services survey and councils are budgeting to spend more this year than they were last year on social care. In addition, we are setting up the integrated care fund of £3.8 billion to better join up health and social care, and that will help to improve the care available to patients as well as reduce pressure on budgets.

[Barbara Keeley]

But Government budget cuts have forced Salford local authority to change its eligibility criteria. For 1,400 people it is going to be zero-day social care, not seven-day social care, and even our excellent Salford Royal hospital is going to struggle when those 1,400 people find that the hospital is the only option for them. Age UK says these cuts make “no financial sense” and are “morally wrong”. When are Health Ministers going to see that point?

[Dr Poulter]

I make two points. First, the eligibility criteria began to change under the previous Government, so it is wrong of the hon. Lady to try to make political points which do not stand up to scrutiny. Secondly, I am disappointed that she is unable to recognise that there is very good integration of health and social care in Salford, in her own constituency. That is a model that we could look at to see how good care can be delivered elsewhere.