Special Measures Regime

Grahame Morris Excerpts

Wednesday 16th July 2014 Commons Chamber

[Mr Hunt]

I am happy to do so. The hospital has recruited 95 more nurses and nursing support staff since last July. It has appointed a director of nursing and a medical director and lead for patient safety, which strengthens clinical leadership. Some very important changes have been made, and I pay tribute to the hospital’s leadership for making that possible. I hope my hon. Friend understands that, under the new system we have set up, it is not for the Secretary of State or any Minister to say when a trust is ready to come out of special measures. We have deliberately given that judgment to an independent chief inspector, so that no one who has a vested interest or a hope that a hospital will come out of special measures, and no one who is involved in turning around a trust, is responsible for that important independent judgment. However, that means that, when hospitals come out of special measures, people can have confidence that the judgment has been correctly made.

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

This is an important statement, but it is regrettable that the Health Secretary is implying that the care failures were all the fault of the previous Government. Will he confirm that Sir Bruce Keogh, who gave evidence to the Select Committee on Health yesterday, and not the Secretary of State, decided which hospitals would be placed in special measures? I understand that Sir Bruce’s decision was based on those hospitals being outliers for two consecutive years. According to my maths, that means that the failures described by the Secretary of State occurred on this Government’s watch. If he is apologising and feeling contrite, would he like to own up to that failure?

[Mr Hunt]

The examples of poor care I gave happened under this Government. I am therefore being absolutely clear that failures in care happened under both the previous Government and this one. The difference is that this Government are doing something about it. We are taking action and taking the difficult steps to get those trusts out of special measures. The public are beginning to have confidence that, when there are problems, they are not being swept under the carpet but being dealt with.

Oral Answers to Questions

Grahame Morris Excerpts

Tuesday 15th July 2014 Commons Chamber

[Norman Lamb]

The truth is that progress is far too slow. This has been a scandal that has dragged on for many years. It is not a new problem, and helping people who are capable of living independent lives with support in the community to get out of institutional care is long overdue. Changing the culture is complex and difficult, but we are absolutely determined to sustain the pressure to ensure that change is achieved.

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

22. I thank the Minister for those replies, but I understand that Sir Stephen Budd has been asked to lead a working group on these issues, reporting to NHS England. Will the Minister say a little more about the purpose of this group and its significance, in the light of the failure to meet the June deadline?

[Norman Lamb]

That is absolutely right, but Sir Simon Stevens took the view that it was essential to get the voluntary sector much more involved in the whole process. There are brilliant organisations such as Mencap and the Challenging Behaviour Foundation which are absolutely committed to achieving change, and the more we can work with them to achieve that change, the more likely we are to be successful.

NHS Investigations (Jimmy Savile)

Grahame Morris Excerpts

Thursday 26th June 2014 Commons Chamber

[Mr Hunt]

I commend my hon. Friend for his campaigning for vulnerable children over many years. The letter I sent to NHS England this morning asks it to make sure that all the lessons are learned from the reports, and it includes the very clear suggestion—I want the NHS to interpret my letter in this way—that it should ensure that it commissions the support needed for children in these circumstances so that they get the very support that is necessary. This is not just about encouraging people to speak out; it is about making sure that when they do, they feel listened to and supported.

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

I thank the Secretary of State for his statement and my right hon. Friend the shadow Secretary of State for his considered response. In relation to the scale of the abuse—with ages ranging from five to 75, and involving 28 hospitals—lessons need to be learned about the systematic failure not just within the NHS, but within other institutions. Will the Health Secretary have discussions with the Cabinet Office and others to make sure that appropriate lessons are learned?

[Mr Hunt]

Absolutely. I want to reassure the hon. Gentleman that we are taking a cross-Government approach—across a range of Departments, but particularly the Department for Education and the Home Office—and that the Government as a whole will draw the lessons from this whole horrific series of episodes to make sure that we have a joined-up approach.

Oral Answers to Questions

Grahame Morris Excerpts

Tuesday 10th June 2014 Commons Chamber

[Jane Ellison]

My hon. Friend highlights that there are a lot of different approaches to reducing the pressures on A and E. The great thing is that we are seeing real innovation from local clinicians, supported by local Members of Parliament. That shows what can be done when we address these problems with an innovative approach, and think about how we can reduce these pressures and ensure that as many people as possible are served in the right way and treated outside A and E, if that is not the place they should be.

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

7. What discussions he has had with NHS England on the future of the cancer drugs fund.

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

We have committed to continuing the cancer drugs fund until the end of March 2016. We will consider carefully with NHS England how, in the longer term, we can support patients in accessing cancer drugs that could benefit them, at a cost that represents value to the NHS.

[Grahame M. Morris]

I thank the Minister for that answer, but is it not true that last year the cancer drugs fund was again underspent—funds that could be used to pay for advanced radio therapy? Every MP has received a letter from the England rugby legend Lawrence Dallaglio asking for a meeting to highlight this problem. Why is the Secretary of State refusing to meet Mr Dallaglio, along with top cancer clinicians in Cancer Research UK?

[Norman Lamb]

First, if only it was underspent. More than 50,000 patients have now benefited from the fund, which is fully spent. More than £1 billion will have been committed in the full period of the fund. I have confirmation from the Secretary of State that he has already met Lawrence Dallaglio. I hope that will reassure the hon. Gentleman.

Ambulance Resources and Response Times

Grahame Morris Excerpts

Wednesday 14th May 2014 Westminster Hall

[Mr Iain Wright (Hartlepool) (Lab)]

May I begin by saying what a pleasure it is to serve again under your chairmanship, Mr Crausby? I hope that you will pass on my most grateful thanks to Mr Speaker for assisting me in securing this important debate so quickly after I made my request to him.

I also want to thank the front-line ambulance staff and paramedics whose professionalism and expertise, combined with care and compassion, can often mean the difference between life and death. Time and time again, we hear of the dedication beyond the call of duty of front-line staff in the NHS, and it is entirely right that we hold them in high regard and give them the recognition, remuneration and resources to do their job.

This debate was prompted by the tragic circumstances surrounding the death of one of my constituents, Mr William Gouldburn. Mr Gouldburn was 73 and had served his community as a special needs teacher. He had heart problems, and in the previous couple of days he had come out of hospital after surgery to his shoulder. After leaving hospital, he had felt unwell, to the extent that a doctor was called to his home at 9 am. Less than 90 minutes later, Mr Gouldburn collapsed in his bedroom and an ambulance was called by 10.32 am. The call was not considered to be urgent by the contact centre that took it, and a response time of 60 minutes was given. However, even that response time was not met. It was after 12 noon that a St John Ambulance arrived.

My understanding is that Mr Gouldburn’s family, who were naturally frantic about his condition, placed a total of seven calls about his case to the emergency services during this period. At this point he was lying on the floor of his bathroom, and he was to do so for more than 90 minutes. A regular ambulance was eventually dispatched, but Mr Gouldburn was pronounced dead shortly afterwards. I hope that the whole House will join me in sending condolences to Mr Gouldburn’s family.

At the inquest into Mr Gouldburn’s death last month, a manager for the North East Ambulance Service said that the service had been experiencing a high level of calls and that ambulances were delayed in admitting patients to North Durham hospital due to a lack of available beds. The manager was asked by the coroner:

“Is what I’m hearing you don’t have resources to meet demand?”

The ambulance service manager stated:

“Yes, that’s correct. It is a national problem”.

Mr Gouldburn’s case raises some significant questions about ambulance services, which is why I wanted to secure this debate.

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

Will my hon. Friend give way?

[Mr Wright]

I will certainly give way to my parliamentary neighbour.

[Grahame M. Morris]

I am grateful to my hon. Friend for giving way and I congratulate him on securing this important and timely debate. There are serious concerns about the performance of the ambulance service in the north-east region. What is his opinion of the assessment by its chief executive, Simon Featherstone, that the service’s unsatisfactory performance is not as a result of the cuts, given that the trust is having to make £23 million of cuts during the lifetime of this Parliament?

[Mr Wright]

I must praise my hon. Friend, because he does fantastic work on health issues through his passionate commitment to the NHS and in his work on the Select Committee on Health. He is absolutely right, and I will come on to the finances and resources for ambulance services in a moment.

Mr Gouldburn’s case was tragic, and from what the coroner said, it was avoidable. However, a further tragedy is that his case is not unique or isolated. I have been told about similar cases, as my hon. Friends have been.

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[Mr Wright]

I know that my hon. Friend has spoken in the House about this issue before, and I praise him for that. The use of private ambulances is taking resources away from our having a sustainable public service, which all our constituents want. As a result of that, the ambulance services are not able to invest in their work force, and something needs to be done about it. I hope that the Minister will respond directly to my hon. Friend about that issue, because the use of private ambulances is simply unacceptable.

[Grahame M. Morris]

I am grateful to my hon. Friend for giving way again. As this is a 30-minute debate, I will keep my interventions short, although I have a whole list of constituents who have waited an inordinate length of time; there is not the opportunity in a short debate, such as this one, to give all those examples.

In relation to the specific point about private ambulances, is it possible that the Government’s health reforms have led to fragmentation? I ask that because I have met representatives of front-line ambulance staff who have told me that the one-year contracts from the clinical commissioning group are not helping with the North East Ambulance Service NHS Trust’s forward planning of the services and resources that are needed to meet local demand.

[Mr Wright]

My hon. Friend makes an important point. How can an ambulance service plan for the next five years if it faces annual commissioning rounds? That does not work and does not provide long-term sustainability.

The North East Ambulance Service, which, like other ambulance services, has received a flat cash offer from the Government over the course of this Parliament, has been required to cut £4.83 million from its budget for 2012-13, which is some 5% in real terms, and another £4.35 million for 2013-14. Unison estimates that real cuts of about 20% to 25% have been made to ambulance services so far over this Parliament. Those cuts, coupled with rising demand, are having a detrimental impact on the quality of ambulance service that people receive.

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[Jane Ellison]

No, because I have only just begun and the hon. Gentleman took many interventions.

Emergency services are the first port of call for many of us when serious illness or accident strikes. The total number of emergency calls to ambulance services in England in 2013-14 was 8.4 million, which is a 0.9% drop over the previous year. Unfortunately, a small proportion are unnecessary or frivolous, but the overwhelming majority are from people who feel in need of urgent help.

The growing number of people living with chronic conditions and the ageing population to which the hon. Gentleman referred are placing increasing pressure on urgent care services, something that we all acknowledge. It is important for my Department to work with Public Health England, local commissioners and health care providers to educate and engage the public on measures to prevent chronic health problems from developing. There are a number of people who end up in A and E because they have not taken medication properly or who suffer acute problems as a result of a chronic condition. Hon. Members will be aware of some of the longer-term problems in their region, which result from difficult public health challenges. Tackling those is my own particular portfolio, and is one way in which we can make the emergency services more sustainable in the longer term.

I hope hon. Members recognise that. At times, it seemed that they were merely committing themselves to significant additional future spending rather than also turning their minds to the longer-term challenges.

[Grahame M. Morris]

Will the Minister give way?

[Jane Ellison]

I am going to continue and try to make a few substantive points. If I have time, I will give way.

All 999 calls are triaged into two basic categories, red and green, depending on the seriousness of the call. Those placed in the red category are calls where the patient is in a life-threatening condition; an example would be someone suffering a cardiac arrest. Such calls require assistance on the scene as quickly as possible and the Government have set targets for all ambulance services in England of a response within eight minutes in 75% of cases. The latest figures, for March 2014, show that in north-east England—the area of the hon. Member for Hartlepool—the median average response time for red category calls was 6.4 minutes. Nationally, those figures show that 76.2% of red 1 calls, which are the most critical, received a response within eight minutes. In the north-east the target was also met, with 75.2% of patients receiving a response within eight minutes. That is not to say that there are not significant problems in some cases, but it is important to place on the record the service’s effective work in meeting that target.

Less critical 999 calls placed are in the green category. Those calls are not subject to national targets. Some ambulance services set their own targets for response times, and NEAS uses a one hour standard. It is important that such calls receive a timely and appropriate response, but red calls must be prioritised, as a person’s life may be in immediate danger.

There has been recent media coverage of long waits for ambulances, and hon. Members have alluded to constituents’ experience of such waits during this short debate. Every patient should expect to receive first-class care from the ambulance service, but the nature of emergency response work means there will always be incidents where unfortunate timing leads to a situation in which someone who is assessed as being in a non-life-threatening situation calls 999 at the same time as several other people who are in life-threatening situations. I am sure that hon. Members recognise that that would be the case under any Administration.

[Grahame M. Morris]

Will the Minister give way?

[Jane Ellison]

Briefly.

[Grahame M. Morris]

I am grateful to the Minister for giving way, but I cannot let that pass, because the situation is different now. I have had the honour of representing Easington for four years and it is evident from the cases that are coming to me and to colleagues from the region that the situation is worsening. One case was that of a young man who broke his hip playing football and waited for two and a half hours in the rain. He was in the centre of the constituency, in an area that is readily accessible. Another was of an old lady who waited two and a half hours for an ambulance. She died the following day. Something is sadly wrong with the North East Ambulance Service and the situation is deteriorating. We have all had cases that are really quite shocking, and something needs to be done.

[Jane Ellison]

I am not familiar with the cases that the hon. Gentleman mentioned, but I will draw them to the attention of my ministerial colleagues and of the trust. I spoke to the head of the trust yesterday, and will make sure that the debate is brought to the trust’s attention. However, I gently say to hon. Members that they surely cannot be suggesting that at no previous time, under any previous Government, have there been any cases in which a service did not get this right. It is important to—

Oral Answers to Questions

Grahame Morris Excerpts

Tuesday 1st April 2014 Commons Chamber

[Mr Hunt]

My hon. Friend is absolutely right. Last week I was in one of the safest hospitals in the world, Virginia Mason hospital in Seattle, which has cut litigation claims by three quarters since it introduced safer care. We have fantastic hospitals in this country too, such as Salford Royal. The truth is that safer care is better value for money: it means that more money can be spent on the front line, not on litigation.

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

The Secretary of State is not showing much compassion towards hard-working NHS staff, who have a 1% pay rise. One year on from the top-down reforms, what does he think of the survey showing that 69% of front-line staff think his reforms are damaging patient care?

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[Norman Lamb]

I remember well the meeting I had with my hon. Friend, other hon. Members and some families, and indeed I remember the testimonies those families gave. I will write to NHS England about his question and report back to him on the progress it is making.

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

T2. How does the Minister respond to a warning from the UK’s top cancer doctors that the planned closure of 18 specialist centres for treating the victims of brain cancer is putting patients’ lives at risk by delaying treatment? It is clearly at odds with the Prime Minister’s assurance about improving access. Those top brain surgeons say that it is appalling. Will the Secretary of State stop it and engage in a proper and meaningful review?

[Mr Jeremy Hunt]

The review the hon. Gentleman refers to is a consultation by NHS England to ensure that we commission specialist services better. There has been a 23% increase in the number of cancer sufferers getting treatment under this Government. We want to improve on that record even more, which means having sensible discussions on how to improve specialised commissioning, and that is what is going on.

NHS Patient Data

Grahame Morris 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—

[Nadine Dorries (in the Chair)]

Order. Mr Morris, this is a 30-minute debate, so can you keep your intervention short, please?

[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.

[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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[Grahame M. Morris]

My hon. Friend is being very generous about interventions. Again, she makes an excellent point. We need an effective audit trail. If these data sets are being sold on, we need some effective control. That should be stopped. I hope that the Minister—

[Nadine Dorries (in the Chair)]

Order. Barbara Keeley.

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[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—

[Grahame M. Morris]

Will the Minister give way?

[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.

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[Dr Poulter]

The hon. Lady will recognise that NHS England is an arm’s-length body, so it has less accountability than—or certainly not the same accountability as—a civil servant does to a Minister, and it has a degree of independence. If there are concerns to be raised, as she has just outlined, it is for the Chair of the Committee to write to obtain clarification if he believes that to be appropriate. I am sure he will do so if he feels that that is right. It is not for me, as a Minister, to interfere with the workings of a Select Committee and I do not propose to do so.

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

No. I have listened to the same speech from the hon. Gentleman as did my right hon. Friend the Member for Chelmsford (Mr Burns). The hon. Gentleman is always very helpful in tying himself in knots and confusing debates. On this occasion, however, I will make some progress, because I have got 10 minutes left and I would like to put down some further reassurances. I may give way later on, time permitting.

Once again, I congratulate the hon. Member for Worsley and Eccles South on securing the debate, and I would like to say at the outset that we all believe care.data to be a good thing. It is good news for patients, for improving transparency in health care and for improving the quality of research. Those are undoubtedly good things, and we must not lose sight of them in our discussion. The lessons of Mid Staffordshire point out that if we do not properly expose examples of bad care—if we do not have the data, and the transparency in the use of those data, to expose good and bad care in the NHS—bad things can happen to patients. That is a lesson that we must heed.

We must also recognise that if we had had better data sharing in the past, we might have been able to learn better how to recognise patterns in prescribing that were to the detriment of patients, such as the example that has been cited of the use of thalidomide during pregnancy. We might have avoided some very bad things happening to patients if we had had the necessary data. That is what our proposals are about.

This is not a sudden, big-bang change. Opposition Members have put it about that we are dealing with a big change in approach to the use of data in the NHS, but I remind the Chamber that in 1989, hospital episode statistics were first collected for in-patient data, in 2003 for out-patient data and in 2007-08 for A and E data, and primary care data are now being made available.

Of course we understand that the use of data can be concerning, so I want to reassure everyone that the right safeguards are in place, many of them established by the Health and Social Care Act 2012. The new body, the Health and Social Care Information Centre, must have regard to the safeguards put in place by the 2012 Act. The Government take the safeguarding of patient data very seriously.

The commercial reuse of licences was raised in the debate. The Health and Social Care Information Centre has confirmed that some reuse agreements remain in place for specific organisations in relation to approved purposes. The purpose of each application is carefully considered by the HSCIC before it is agreed. That consideration includes the application’s benefit to the health and care system, a safeguard established by the 2012 Act for the use of data.

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[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

I will give way in a moment; I am just going to finish this point. Following concerns expressed by the Health Committee in its meeting of 25 February, Sir Nick Partridge, a non-executive director on the HSCIC board, has agreed to conduct an audit of all the data releases made by the predecessor organisation, the NHS Information Centre, and report on that to the HSCIC board by the end of May.

Furthermore, a report detailing all data released by the HSCIC, including the legal basis on which those data were released and the purpose to which they are being put, will be published by the HSCIC on 2 April. That report will be updated quarterly. I reiterate that the HSCIC will release information for health and care uses only.

[Grahame M. Morris]

The Minister is arguing that the scheme is an extension of what happened before, but there is clearly a quantum difference. There is general agreement that it is a wonderful thing to have data sets for research and public health purposes. The difficulty that the public have, about which we need to restore confidence, is when that information is being used for marketisation—for marketing purposes—by commercial reusers. I am not reassured by the Minister’s comments, but he has an opportunity to correct the problem in the House of Lords.

[Nadine Dorries (in the Chair)]

Order. Mr Morris, that is a very long intervention.

Care Bill [Lords]

Grahame Morris Excerpts

Tuesday 11th March 2014 Commons Chamber

[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.

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[Grahame M. Morris]

The hon. Lady is making a powerful case for the benefits of a system that would make it possible to identify hotspots of disease and carry out early interventions. I think that it could also be useful to studies of the long-term effects of medication. For instance, there was a long-term study of the link between the oral contraceptive and the incidence of particular forms of cancer. I think that such a database would be incredibly useful to studies of that kind, provided that there were the necessary safeguards in relation to privacy and access.

[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.

--- Later in debate ---

[Sarah Newton]

We could spend a great deal of time talking about different types of medical research that are enabling huge progress to be made with particular diseases. Given the time that is available to me, however, I now want to talk about another aspect of the importance of sharing medical data to improve patient outcomes—the integration of social care with NHS services. I am sure that everyone in the Chamber would say that that was a good thing. It is important for all the services in a community, whether provided by a local council or by primary or acute care authorities, to be joined up around patients and their families to ensure that patients receive the best possible care, whatever their long-term condition may be. That is a subject that we all discuss, and on which we largely agree. However, when it comes to practical implementation, what we hear in inquiry after inquiry is that the barrier that prevents the delivery of those joined-up, improved outcomes is a lack of ability to share data.

[Grahame M. Morris]

The hon. Lady is being extremely generous in taking so many interventions. I agree with her assessment of the value of integration and better collaboration, but does she agree with me that the most important way of getting primary care on board is winning the confidence of general practitioners? One suggestion from the British Medical Association is that the Department of Health should offer GPs an indemnity against the possibility of being sued by patients who feel that their data has been misused. Does the hon. Lady think that that would be a good way of rebuilding their trust?

[Sarah Newton]

I think that GPs are some of the most trusted people in our communities, and that the relationship between them and their patients is incredibly special and important. I certainly have not detected any lack of trust in GPs in the course of my constituency work.

Let me tell the hon. Gentleman about a wonderful initiative that is taking place in Cornwall as part of the Government’s pioneer programme. Many organisations in various parts of the United Kingdom applied to the Government to become integration pioneers, and 14 areas were chosen. I am very proud that Cornwall was one of them.

We are blessed with a unitary authority and a commissioning group of GPs, the Kernow commissioning group. They are full of great ideas about working in new and collaborative ways to improve health outcomes in Cornwall: they are truly dedicated individuals, with an inspiring programme of change. However, all that depends on data sharing. If patients in Cornwall are to be given the joined-up care that they need, general practices must be able to share patient information with other organisations in Cornwall—organisations such as Peninsula Community Health, a social enterprise that is delivering most of our community services alongside the acute hospital, Royal Cornwall hospital, and voluntary sector organisations. They are leading the way in our pioneer bid to enable patients to live independent, good-quality lives at home.

All that great work is underpinned by the need of all those people, working together to bring about health improvements in Cornwall, to share patient information. At present the Cornwall pilot is going very well, is growing, and is supported by both GPs and patients. That leads me to believe that the relationship between GPs and others is different from the relationship described by the hon. Gentleman, in that it is based on trust.

[Grahame M. Morris]

I apologise if I did not make my point very well. I was suggesting not that there had been a breakdown of trust between patients and GPs, but that there was a tension between GPs and the Department of Health—or, at least, NHS England—over the way in which the scheme was being administered, and that there was an opportunity for that to be corrected. That was my simple contention.

[Sarah Newton]

Again, I thank the hon. Gentleman for his intervention and I am sure we are going to hear more from the Minister, although we have already heard a great deal from him, about the sorts of reassurances GPs and other people have been seeking about how the data are going to be used.

It is essential that we address the fears and concerns that have been so well raised today, particularly by my hon. Friend the Member for Totnes (Dr Wollaston), because it is vital that people do not opt out. For all the benefits we have heard about today in improving care in our country by integrating the NHS with social care and in making sure we get the benefits from our first-class medical research, we have to have a data capture and data sharing set of regulations and behaviours among the people who are making those decisions that gives us all confidence so that we truly do derive the benefits we have heard about today.

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[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.

[Grahame M. Morris]

My hon. Friend is making important points and I hope that the Minister is taking note of them. Does my hon. Friend share my concern about the Minister’s assurances last night on the security of the data? The buck stops with the Health and Social Care Information Centre, not the Minister, but Ministers come and go, so it is easy to make assurances, as he might not be here next year.

[Mr Reed]

I absolutely share those concerns. We did not hear anything last night that reassured anybody who understands the Bill. Certainly, Government new clause 34 is not worth the paper that it was hastily written on, and I want to move on to that right now.

Surely it is not too much to expect the democratically elected politician who sits in Cabinet and is responsible for the national health service to be accountable for how the medical data that that service captures is used. Crucially, the Secretary of State for Health is accountable not only to this House but to the people of this country in a way that a quango cannot be and has never been. Such accountability can begin the process of building the trust necessary to ensure the success of projects such as care.data. Without that, QED, the Secretary of State is asking Parliament and the people of this country for permission to remove democratic accountability from how their confidential medical data are used. The implications for the use of patient data in any project are utterly toxic.

I said earlier that it would be tragic if the Government’s failings were to continue to contribute towards the erosion of trust in care.data. Sadly, the Bill provides scope for other regrets. Part 1 seeks to make worthwhile but modest improvements to our care system, falling a long way short of the concept of whole-person care articulated by Labour. The Government new clauses and amendments that we are now discussing, however, and clause 119—the hospital closure clause that we will discuss later—fundamentally disfigure what is without doubt a worthwhile Bill. Perhaps that shows us the two sides of the coalition in the ministerial team. We shall see. None the less, it is a cause for regret.

Trust is at the heart of Government new clause 34. Yesterday, the Minister tried to reassure the House that the new clause would provide the safeguards that people require for the protection of their confidential medical data. He demonstrably failed to do that. Challenged time and again to illustrate how his new clause would facilitate the claims he has made for it, or improve safeguards for patients, he could not do so. Next time, it might be a good idea if the Secretary of State could get the same person to write both the Government amendments and the Government press release, because the amendments and the new clause do not provide what the Government claim they will. Sadly, that erodes trust yet further.

New clause 34 has been made necessary due to the appalling handling of the care.data project by the Government and the resulting erosion of public trust. The truth is that the new clause was hastily tabled again just before the deadline for amendments because the original, botched new clause 14 did not do what the Government said it would. Guess what? New clause 34 does not do what they say it will either. Subsection (3) would amend section 261 of the Health and Social Care Act 2012 to read:

“The Information Centre may disseminate (other than by way of publication), to any such persons and in such form and manner and at such times as it considers appropriate.

But the Information Centre may do so only if it considers that disseminating the information would be for the purposes of—

(a) the provision of health care or adult social care;

(b) the promotion of health.”

Yesterday, the Minister was given numerous opportunities to explain how this provision would prohibit private health insurance companies from gaining access to our data—he could not do so. The new clause provides for entirely elastic definitions that, in practice, will have a limitless application.

What happens when a private health insurance company requests information from the HSCIC on the basis that it was going to conduct specific controlled, randomised assessments of the impact of physical activity on various age groups in order to promote and recommend appropriate physical activity to its policyholders— perhaps with a view to reducing their premiums? That is clearly being used to promote health and well-being, so how would new clause 34 stop it? It would not—under the proposed wording, it would be facilitated. Once such a company has the data, what prevents it from using them for other means? Under our new clause 25, such use would be a clear offence, but sadly the Government have offered no such safeguards.

It is no wonder the public cannot trust Ministers. Just a few weeks ago, in Committee room 9, the Minister assured me and the rest of the Public Bill Committee:

“There are strict controls about the release of potentially identifiable information; for example, that type of information would only ever be released to approved organisations for approved purposes”.––[Official Report, Care Public Bill Committee, 30 January 2014; c. 516.]

Yet these strict controls fail to appear time and again. The only comfort offered to the public is that those issues will be resolved by regulations drafted by Ministers in whom confidence and trust has been lost—that is not good enough. With that in mind, can the Minister explain who signed off the release of data covering 47 million patients that were obtained by the Institute and Faculty of Actuaries? Such issues must be addressed, and it seems likely that when he eventually responds to the Chair of the Health Committee, the Secretary of State will give cause for yet further concern about how patient data are being used.

In responding to the news about that massive data breach, a Department of Health source stated:

“The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems.”

It is chaos: if the rules have already been changed, the new clause tabled in haste by the Minister is full of superfluous subsections. Why does he need to change the rules again if they have already been changed?

We have a golden opportunity to get this right. The more that patients allow their data to be used, the greater the positive effects of care.data. These issues will not be resolved today and they will not be resolved by any of the Government proposals before us. If we want care.data and schemes like it to work in the future, we need to establish trust. Getting this right will save lives. Accountability is critical when accessing and using the most sensitive personal data, and the whole House can send a message to the people of this country—that we understand their concerns, that we are serious about safeguarding their most private data and that we are determined to continue to improve our health services—by voting for new clause 25 and amendment 29.

--- Later in debate ---

[Dr Poulter]

As things stand at the moment, free text is not going to be used. That is the reassurance given by the HSCIC; it clearly does not envisage that text being used and it has given reassurances on that. That is reassuring for me and I hope it is reassuring to my hon. Friend. There are those additional safeguards in place, particularly for vulnerable patient groups, to make sure that more personal data about convictions, imprisonment and abuse by others will not be collected by the information centre.

[Grahame M. Morris]

rose—

[Dr Poulter]

I will deal first with the points made by the hon. Member for Worsley and Eccles South and then I will give way. I inferred from the hon. Lady’s remarks that she thought that GPs should be able to opt out for their patients. However, we have made it clear that it is a decision not for GPs to make on behalf of their patients but for the patients themselves. Furthermore, 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.

[Grahame M. Morris]

I am grateful to the Minister for giving way. Will he clarify the point raised by the hon. Member for Totnes (Dr Wollaston) in relation to vulnerable patient groups? Does that include patients with very rare conditions who could be identified, even from anonymised data, because they are part of a relatively small group?

[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.

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[Andy Burnham]

The hon. Gentleman makes that argument as if there were no changes to hospitals under the previous Government. There was plenty of change, but there is a right way and a wrong way of doing things. I would argue, as I just have, that the previous way of doing things was a better way.

[Grahame M. Morris]

Will my right hon. Friend give way?

[Andy Burnham]

In a moment.

The previous Government made changes to stroke services in London just before the last election. The number of units went down from 12 to eight. That was based on a clinical case for change. We took that argument to local people and said, “Look, it will save lives if this goes through.” That is how the Department can take people with it—by building a case for changing hospital services. Clause 119 threatens to set that back, because it puts finance in the driving seat. That risks losing public trust in the case for change. That is why what we are being asked to endorse today is, in my view, fundamentally wrong.

[Grahame M. Morris]

My right hon. Friend has made his point powerfully. I was going to ask him for an example of how it is possible to make a reconfiguration that is clinically driven. He has given the example of stroke services in London. Another example is coronary services in the north-east, where an overwhelming clinical case was made by clinicians and accepted by the general public.

[Andy Burnham]

The difficult thing for me is that when I think back to some of the processes I was involved with—stroke services in London, child care and maternity services in Greater Manchester, changes to A and E across the country, Chase Farm hospital, and other places—those issues were cynically used by those on the Government Benches when they were in opposition, and it was a bare-knuckle fight to save every hospital in the land. That is what they said, whereas we made the case for change because it would improve patient safety. I would not change my tune if I was in opposition; I still believe that hospitals need to carry on changing, but as I said, I will not do that by imposing changes on local people. The right way is to explain why, and take people with us.

--- Later in debate ---

The core points made about the consequences when a trust special administrator is appointed are important, although, with respect to other Members, we must be clear that those consequences are very limited. We are talking about the consequences of appointing a TSA to a trust that is financially unsustainable. We are all agreed that if the trust is not financially unsustainable, a TSA will not be appointed. We all agree that reconfiguration is necessary. Of course it is better done in consultation with local communities and professional groups and through the normal reconfiguration process; everyone agrees about that. The question before the House in relation to clause 119 is what happens if those preferred options fail, the trust becomes financially unsustainable, and a TSA is appointed. It is a question of whether the TSA, in that narrow set of circumstances occurring twice in five years, is required to think only about the institution in isolation or should be looking at the interests of patients as a whole in the context of the health economy in the immediate and surrounding areas.

[Grahame M. Morris]

I hold the Chairman of the Select Committee in high regard for his expertise. Let me point out, though, that he analyses this on the basis of two cases in five years, but in fact the situation has changed rather dramatically. The information presented to our Committee is that about a third of NHS trusts are predicting deficits, and, as we heard earlier, 32 are in severe financial difficulty. Those may not be the exceptional circumstances that the Minister would have us believe, and that should be a cause for concern for Members on both sides of the House.

[Mr Dorrell]

Saying that a trust is in deficit is not the same as saying that it is heading into administration. It lies within the power of the commissioners and the trust management regime to avoid administration, which everyone in the House agrees is the preferred outcome. Indeed, it is striking that each of the Members from Lewisham and from Staffordshire identified the difficulties that the TSA regime creates and the difficult circumstances that arise when a TSA is appointed. Some Labour Members have suggested that this is a back-door means of driving change without consultation by appointing TSAs to trusts all around the country. If I thought that that was anywhere near to being anybody’s intention, I would oppose clause 119. However, the important point about clause 119 is that if it were the Government’s intention, which I do not remotely believe that it is, they could pursue that policy whichever way the Division goes.

The point about clause 119 is that it raises an extremely narrow question: should the TSA take into consideration only the institution that has been demonstrated historically to be unsustainable, or should the TSA look outside that immediate health economy for solutions that will better serve the needs of patients in that area? It seems to me that we need only pose the question in that precise and, I believe, accurate way for it to be seen to be a rhetorical question.

[Mr Dorrell]

I do not always agree with every word my hon. Friend says, but I agree with everything he said in that intervention, so I am delighted that I gave way to him. His argument is that commissioners and the trust management should get ahead of the trust administrator. Nobody should sit around waiting for an administrator to be appointed; the objective should be to avoid trust administration along precisely the lines identified by my hon. Friend.

[Grahame M. Morris]

I want to make a few points in support of amendment 30, which would delete clause 119 on the basis that the TSA was never designed to deal with reconfigurations across an entire region. Despite the assurances given by the right hon. Member for Charnwood (Mr Dorrell) and Government Front Benchers, the potential remains for this mechanism to be used as a back-door route to making changes and closures at hospitals.

I also declare my support for new clause 16. However, although it would ameliorate the worst parts of clause 119 by ensuring that local commissioners in non-failing areas had a veto over any decisions affecting their trust, it is not, as colleagues have said, a perfect solution.

Clause 19—or, as 38 Degrees and other campaigning groups refer to it, the hospital closure clause—should not stand part of the Bill. I had the honour to serve on the Bill Committee for what is now the Health and Social Care Act 2012 and I attended 39 out of 40 sittings. I missed one because I attended a Health Committee sitting at which the then Health Secretary was giving evidence about NHS England, which was previously called the NHS Commissioning Board, and I did not want to miss that.

I sat through that Bill Committee and listened to the Government’s reasons for their reorganisation. We were told that it would deliver a decentralised service and put power in the hands of clinicians. To be frank, clause 119 makes a mockery of that claim. Far from delivering a decentralised service that puts power in the hands of clinicians, the Secretary of State seems to be seeking to take power away from GPs and local communities in order to further reconfigure the NHS for purely financial reasons.

To suggest that the trust special administrator regime is a natural extension of the existing legislation is a gross distortion. The TSA process was never intended to be used as a back-door way to make unpopular reconfigurations. Potentially, clause 119 could take control of every NHS trust and foundation trust away from the public, leaving no hospital bed in the country safe. It should not stand part of the Bill.

If the Bill is enacted, clause 119 will mean that the NHS in England will face further wholesale, top-down reorganisations. The clause could be used as a method to achieve that. I do not think that anyone in this House wishes that to happen. I am sure that, in their hearts, some Government Members do not want that, and certainly no one in the country voted for it. Our problem is that there would be virtually no accountability to local people.

The successful legal challenge brought by the London borough of Lewisham and the Save Lewisham Hospital umbrella campaign—I pay tribute to their efforts, which have brought about this situation—showed conclusively that the Secretary of State did not have the power to axe Lewisham’s accident and emergency and maternity wards as a solution to problems in the neighbouring South London Healthcare NHS Trust.

Clause 119 is designed to allow the Secretary of State to do what he failed to do in Lewisham—to close down thriving and financially sustainable hospitals on a whim, without full and proper consultation. To suggest, as was said in Committee, that a tokenistic meeting with a local authority overview and scrutiny committee would assuage public concerns does not hold water. We must rebuild trust: we need full and proper consultation with patients and the public, and we need agreements with clinical commissioning groups. I am somewhat surprised at the willingness of Government Members, who have championed the cause of GP-led commissioning, to subvert the role of CCGs in that respect.

[Liz Kendall]

As a fellow member of the Health and Social Care Bill Committee, does my hon. Friend remember that we warned the Government that although there were clearly problems with strategic health authorities, those bodies could take a wider view of the health economy, and that having very new, young and small clinical commissioning groups that are all separate meant that it would be very hard to take such wider views? Does he remember that we warned the Government in those debates, and does he agree that they are doing this top-down reorganisation now precisely because there is no mechanism for delivering wider health views?

[Grahame M. Morris]

I do remember those debates, some of which were very long and acrimonious. I still have the scars on my back. They are a badge of honour, and I am proud to have been in the trenches with hon. Members fighting to preserve our NHS and to save it from the Trojan horse of privatisation.

To return to the matter in hand, the trust special administration process will bring drastic changes to hospital configurations. It represents a move away from the principle of reconfiguration of services on the basis of clinical need in favour of doing so solely on the basis of financial considerations. The justification process starts with the need to save money.

There have been attempts to reassure hon. Members and the general public that the trust special administration process would be enacted only in exceptional circumstances. As in our earlier exchanges about clause 119, hon. Members need to be alive to the situation confronting many NHS trusts, including the fact that about 30 trusts have been identified as being in particular financial difficulties. Those circumstances are not exceptional: come the end of the year and next year, there is a very clear and present danger that they will be not exceptional but normal.

In this situation, the NHS and foundation trusts are struggling, for a variety of reasons, to do more with less. I accept that the burden of the private finance initiative is one of those reasons, but there are others. There have been problems where walk-in treatment centres have closed. NHS spending has fallen in real terms. Almost a third of NHS trusts in England now forecast a deficit at the end of the financial year. There is growing pessimism about the financial health of the NHS, and figures suggest that the number of trusts undergoing the trust special administration regime will grow. As I have said, some 30 trusts have been identified as at risk of closure were clause 119 to be enacted as part of the Bill. Under this Government, it seems that the exceptional circumstances that would trigger the trust special administration process would no longer be exceptional.

I advise hon. Members who want to avoid soon having to take part in campaigns to save accident and emergency or maternity wards in their own constituencies —as has been done by my right hon. Friend the Member for Lewisham, Deptford (Dame Joan Ruddock), my hon. Friends the Members for Lewisham West and Penge (Jim Dowd) and for Lewisham East (Heidi Alexander), and the hon. Member for Stafford (Jeremy Lefroy)—to support Labour’s amendment 30.

--- Later in debate ---

[Andy Burnham]

Given that clause 119 is a dramatic extension of the Secretary of State’s powers, as my hon. Friend is rightly saying, does he agree that it is astonishing that the Secretary of State is not in the House this afternoon to make the case in person, to ask for the powers and to justify the idea that we should entrust the future of our hospitals to him?

[Grahame M. Morris]

I am absolutely amazed. I share my right hon. Friend’s incredulity that the Secretary of State is not here. In my view, clause 119 is one power too many for a Secretary of State who apparently believes the NHS to be a 60-year-old mistake. [Interruption.] That is a direct quotation from the Secretary of State before he took office.

The Secretary of State’s increased power and Monitor’s expanded role directly contradict the Government’s earlier promise that local commissioners would no longer be subject to central diktat. That represents a reversal of the vision that was presented during the consideration of the Health and Social Care Act 2012. Clause 119 supports none of the preconditions for a legitimate reorganisation of a local health economy and will allow trust special administrators to overrule any concerned parties.

If clause 119 becomes law, the Secretary of State will be granted the power to issue directions to require foundation trusts and clinical commissioning groups to take steps that they do not want to take. Any Member who wants to prevent the Secretary of State’s axe from falling arbitrarily on their own hospitals without clinical justification should seek to remove the clause from the Bill. I therefore urge right hon. and hon. Members to support Labour’s amendment 30 and new clause 16, which is a compromise measure to ameliorate the worst aspects of clause 119.

[Steve Baker]

I have listened with quiet astonishment as Opposition Members have suggested that the NHS previously offered meaningful accountability and public control.

In the manner in which the right hon. Member for Leigh (Andy Burnham) spoke to amendment 30, he viciously punched a raw and delicate bruise in Wycombe. As I indicated in my intervention, it was under the last Government that we lost A and E services, maternity services and paediatrics. Years later, all that people want is to have those services back. They want an emergency unit that is capable of accepting whoever turns up. To use the jargon, they want the treatment of undifferentiated emergency patients. The NHS should not be offering constant excuses for why that cannot be provided. God knows, we pay enough in tax and in salaries that people ought to be creative enough to figure out how to offer the treatment of undifferentiated emergency patients at local hospitals like the one in Wycombe. There is a proposal to do so, which I will return to another day,

I have found myself listening to some sort of exposition of a democratic utopia that has never existed. When considering how this has been positioned—the idea that it is about reconfiguration rather than urgent procedures when a trust is in extreme difficulty—will the Minister reassure me that the Government did not establish clinical commissioning groups and health and wellbeing boards, and the rest, just so that they could use this clause and power to override everything else they have put in place?

Cancer Treatment and Prevention

Grahame Morris Excerpts

Tuesday 11th March 2014 Westminster Hall

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

It is a pleasure to serve under your chairmanship, Mr Gray. I congratulate the hon. Member for Mid Derbyshire (Pauline Latham) and apologise for the discourtesy of my being late for the start of the debate.

It is an important subject and I am grateful for a few moments to raise with the Minister an anomaly that affects sufferers of brain cancer and to highlight the dislocation caused by the reorganisation of the commissioning of cancer services. The hon. Member for Basildon and Billericay (Mr Baron) highlighted the tension between organisation and outcomes. That is relevant to the issue I am raising, because of the hiatus that resulted from the reorganisation of the commissioning of cancer services, which came out of the Health and Social Care Act 2012; and it follows the theme of the importance of early diagnosis and treatment set out by the hon. Members for Strangford (Jim Shannon) and for Lancaster and Fleetwood (Eric Ollerenshaw).

University college London’s national hospital for neurology and neurosurgery, in Queen square, is the UK’s largest dedicated neurosurgical hospital. It is not only a UK centre of excellence, but a centre of excellence within Europe. For more than 150 years it has provided treatment and care for conditions including cancer affecting the brain. It is globally recognised. In October 2012, the hospital enhanced its services to cancer patients by the acquisition of one of the new advanced radiotherapy systems that we know as the Gamma Knife radiosurgery machine. I have been to see one of them at St Bartholomew’s hospital, and if the Minister—or any other hon. Member—has not seen one, I recommend making such a visit. It is an incredible piece of kit.

Before April 2013, when the new NHS England took over responsibility for commissioning radiosurgery, the national hospital was using its Gamma Knife to treat NHS patients with brain cancer. On 1 April, however, NHS England informed the hospital that it could no longer treat NHS patients with its Gamma Knife and that all patients waiting for treatment should be transferred to other hospitals. The other hospitals that were identified were run by private health care companies—BUPA and the Hospital Corporation of America. Not surprisingly, the patients concerned—about 60 in total—refused to transfer to other centres, because they would have to engage with new conditions and go through pre-operative checks and scrutiny, and rejoin the waiting list.

That situation makes a mockery of the Health and Social Care Act 2012. When the Government pressed the Act through Parliament, they relied principally on the argument that it would return control of patient care to clinicians and reinforce and enshrine patient choice in the NHS. NHS England has poured scorn on that idea and is exercising control over where patients can be treated. There is no choice for patients and certainly no choice for brain cancer patients who need immediate treatment.

Fortunately for the patients I have mentioned, there is good news. The national hospital is not as callous and cold hearted as NHS England, and it decided to treat them anyway. Some 60 patients have been treated since April. However, that has not dealt with the basic problem. They were treated there because it was their choice, and their clinicians’ choice, and despite NHS England’s refusal to pay for them. I should be interested in the Minister’s response. Will she give me a guarantee in good faith that she will look into that appalling situation as a matter of urgency?

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Gray. We have certainly had a wide-ranging debate. I think I would need another hour and a half to respond to all the points made, but I hope that hon. Members present know me well enough to realise that if I am not able to respond to their points in detail, I will get back to them after the debate. The shadow Minister and I have many opportunities to debate the wider public health issues, so I will devote most of my response to specific points, particularly those made by my hon. Friend the Member for Mid Derbyshire (Pauline Latham), who called for the debate. I will, however, try to touch on all points made in some way.

I congratulate my hon. Friend the Member for Mid Derbyshire on securing the debate. She always speaks movingly on this subject, not least as a result of her personal experience. She has been a tireless campaigner on behalf of her constituents and others, in particular with regard to melanoma. Before I respond to her specific points, I would like to restate the Government’s ambitions, as those apply across the debate. All Members have referred to this, but improving cancer outcomes is a major priority.

We aim to save an additional 5,000 lives a year by 2014-15 and halve the gap between cancer survival rates in England and the best in Europe. As my hon. Friend the Member for Basildon and Billericay (Mr Baron), who is the chair of the all-party group, said, we are not as good as we could be, so there is great effort and commitment to make us better. Our debate has been on how we do that, not why that is the right ambition. To achieve that, more than £750 million has been committed to deliver our cancer outcomes strategy, which includes £450 million to support earlier diagnosis of cancer by improving public awareness and GP access to key diagnostic tests.

Early diagnosis came up many times during the debate. It is worth making the point that most GPs will see relatively few cancers in a typical year. Because we all know someone affected, whether in our family or our group of friends, we imagine that GPs see cancer all the time, but they do not; certainly, they do not see many of the rare ones. The challenge of early diagnostic testing and training to get those tools into GPs’ hands is serious, because that is also a challenge for GPs, of whom we ask a great deal. That is why it is important that the Government are putting money and effort into those early diagnostic tests. That money also goes towards paying for extra testing and treatment in secondary care.

I want to touch on the architecture of the system. It has been mentioned a few times and hon. Members have expressed concerns about the changes to the system. The first general comment I would make is that the main thrust of the debate is that we can do a lot better on cancer, which would seem to lead to the conclusion that the old system was not necessarily delivering the outcomes we wanted. Although caution is understandable when major change has happened, Members are perhaps being unnecessarily gloomy about the changes that can be delivered under the new architecture for the NHS and the health system. Many of the criticisms that have been made this morning were made under the old structures as well.

Cancer is a priority for NHS England. Clinical expertise is at the heart of commissioning decisions and NHS England has established a range of clinical reference groups, and is leading on delivering clinical strategy. NHS Improving Quality is working with the strategic clinical networks and has played a key role in working with the NHS on early diagnosis, especially on awareness campaigns. NHS England has also created national service specifications for a wide range of cancers to ensure consistent, high-quality service across England.

[Grahame M. Morris]

I know that the Minister is trying systematically to get through all the points that were raised, but I challenge the point that there is no fundamental difference under the new arrangements. There really is a fundamental difference in the commissioning of specialist cancer services. Those were previously commissioned on a local basis, effectively, by primary care trusts coming together in London, but now it is done by NHS England. That has caused a huge hiatus for the patient cohort I identified. Will she agree to look at that and, if necessary, meet me and a group of clinicians to highlight the nature of the problem?

[Jane Ellison]

The point I was making was not that there has not been change—of course there has—but that it is far too early for hon. Members to be drawing the conclusions they have about the new system. The Government have put a great strategic priority on cancer and NHS England has been charged with delivering against a mandate and against that strategic priority. I take the hon. Gentleman’s point, but NHS England leads on this subject and is quite clear about the priority that the Government and Parliament put on it. I want to make that point. I understand why people have expressed concern.

[Grahame M. Morris]

Will the Minister give way?

[Jane Ellison]

No, I am going to press on, because I will have no chance of getting through all the specific points that were raised if I get into a debate with the hon. Gentleman.

I turn now to skin cancer. I should mention that NHS England has recently published a service specification—I mentioned that it has those across a number of cancers—on adult skin cancer services. That sets out what the NHS must have in place to offer high-quality skin cancer treatment, care and support. I am happy to send that to my hon. Friend the Member for Mid Derbyshire if it would be useful.

My hon. Friend and other hon. Members expressed great interest in what we are doing to ensure earlier diagnosis. It goes without saying that identifying cancers early has a huge benefit in terms of improving outcomes for individuals and for the whole health system. That is why we have committed over £450 million to improve diagnostic services. Later, I will consider in more detail prevention in the context of public health, but it is worth making the point that although diagnosis and treatment are vital, prevention is the biggest prize of all, because we can stop people even having to get to the point of being diagnosed. The more work on awareness and prevention that hon. Members and local councils—particularly given their new public health leadership role—can do, the more we will save the costs in money and in human misery.

Access to early diagnosis is most effective when people visit their GP early. That is why we are running a local Be Clear on Cancer campaign specifically on melanoma in the south-west in April and May, to raise awareness before the summer. We will evaluate the programme as part of our wider programme of Be Clear on Cancer campaigns, which, as the shadow Minister said, has done so much good work in so many areas.

We are also working with GPs to ensure they have the information they need. Cancer Research UK and the British Association of Dermatologists have developed a GP skin cancer toolkit. Evaluation shows that it has reached almost 10,000 GPs and helped to increase confidence in referring suspicious lesions.

My hon. Friend the Member for Mid Derbyshire spoke quite a bit about the NICE approval process, which was also mentioned by my hon. Friend the Member for Lancaster and Fleetwood (Eric Ollerenshaw). I know that my hon. Friend the Member for Mid Derbyshire is concerned about access to NICE’s approval of drugs for late-stage melanoma. As she knows, our priority has to be to get the best possible results for all NHS patients with the resources we have. NICE’s methodology is the best guide we have to the clinical value and cost effectiveness of different treatments.

We have asked NICE to look at the way drugs are assessed so that patients can get the treatments they need at the best value for the NHS, and the price the NHS pays is more closely linked to the value a medicine brings. NICE will carry out a full public consultation before implementing any changes to its methodology. I understand that NICE plans to launch its consultation later this month, and I urge all Members to contribute. I am sure they will, as many Members present take a significant leadership role in Parliament on cancer.

I turn now to the particular concerns my hon. Friend the Member for Mid Derbyshire raised about yervoy or ipilimumab. Although NICE has recommended yervoy as an option for treating advanced melanoma in people who have received prior therapy, I understand her concern that it should be approved as a first-line treatment. I have been advised that NICE is currently considering yervoy as a treatment for previously untreated stage three or stage four malignant melanoma. Although it is not appropriate for me to intervene in an appraisal, I have been advised that NICE’s initial draft guidance, issued on 25 February, recommends yervoy only in the context of clinical trials, as I outlined to my hon. Friend at Health questions recently.

That is not a refusal, however. Instead, it reflects NICE’s view that the technology is promising but there is insufficient clinical evidence for the appraisal committee to recommend its use as a first-line treatment at this stage. However, I hope I can reassure my hon. Friend that the manufacturer is currently conducting a further trial, which, along with other research, is due to complete in 2016. Once that research is available, I am sure NICE will wish to reconsider its guidance. NICE is currently running a consultation on its interim guidance. Again, I would also recommend that hon. Members, and particularly my hon. Friend the Member for Mid Derbyshire, make their views known to NICE. I always make a point of referring Parliament’s views, as expressed through debates such as this, to the relevant people making the decisions. I did so the morning after the debate on pancreatic cancer last week, when I sent a personal letter with a copy of Hansard to the decision makers concerned to make them aware of Parliament’s views. I always undertake to do that where relevant.

In the interim, I understand that NHS England’s national Cancer Drugs Fund panel has considered including yervoy for first-line treatment of advanced melanoma. The panel has decided to refer yervoy to NHS England’s chemotherapy clinical reference group for consideration for inclusion under baseline commissioning. If that is agreed, clinicians would be able to prescribe the drug for use in first-line advanced melanoma according to the commissioning policy that would be developed by NHS England. NHS England will make its decision known in due course.

I also want to reassure my hon. Friend the Member for Mid Derbyshire that NICE is currently developing a clinical guideline on melanoma. It expects to issue final guidance in July 2015. I hope that gives her some sense that a lot is going on this area. We will endeavour to make sure that we keep her updated.

I will have to canter through some of the other points, Mr Gray, but as so many were raised I hope you will be generous and give me a little time to do so. I turn first to the points made about the Cancer Drugs Fund and the concern that no new medicines are being accepted, which my hon. Friend the Member for Lancaster and Fleetwood raised. Just for the record, so far in 2014 the panel has added a number of drugs to the national list—I will probably stumble over pronouncing some of them, but I hope the House will forgive me. They include kadcyla for breast cancer, tafinlar for melanoma and radium-223 dichloride for prostate cancer.

I turn now to the topic of CCG accountability, which I have often discussed with my hon. Friend the Member for Basildon and Billericay, who chairs the all-party group on cancer with such vigour and passion. I entirely share his view that it is a critical point. He has articulated all the wins over the years in making sure that early outcome indicators are part of the CCG outcomes indicator set, and the importance that early outcome indicators have for early diagnosis and more information about survival rates, which we all want to see. It is important to remember that NHS England can intervene where a CCG is found to be failing in its duty to secure high-quality outcomes, although I accept that that is a high-level intervention. I think my hon. Friend is driving at what we will do with the information when we get it. NHS England is considering how it can better respond to the functions in the outcome indicator set and how all permissions and system structures work together to improve outcomes.

This is the first time we have had this indicator set and I know that my hon. Friend has talked to the national clinical director for cancer, Sean Duffy, about this, which is the right thing to do. I will also meet him to talk about it. It is helpful that Parliament returns to the issue regularly because it helps me to emphasise to NHS England how much store hon. Members set by local outcomes and how important it is for us to have a response throughout NHS England to indicators and outcomes that are not as good as they could be. I accept his challenge, which he knows that I am working on. I am having ongoing conversations about it, but it is always good that Parliament returns to the point and challenges the levers of change.

We have introduced GP inspection, and more and more data will be available to the inspectorate to ensure that it is asking questions not just about what GPs do, but about what they do not do and when we expect them to do more. There are all sorts of ways to challenge the system, and it is ongoing work.

I cannot respond to all the points made by the shadow Minister, but I will touch briefly on one. She referred to a report that highlighted the use of out-of-date equipment. To encourage NHS providers to update existing medical technology infrastructure, the Department established a £300 million fund in March 2012, which is operated by NHS Supply Chain to bulk purchase medical equipment to achieve better prices. In August 2013, NHS Supply Chain announced the signing of a deal with Varian Medical Systems to secure 20 new linear accelerators. More detail is available about that innovation fund and the radiotherapy innovation fund, but I do not have time to go into it now.

As ever, the hon. Member for Strangford (Jim Shannon) is present. He often attends debates and makes forceful points about the need for us to work together. The National Institute for Health Research is funded by my Department, so it is focused primarily on England, but I assure him, as I have tried to previously, that the published research is available to anyone. NICE guidance applies formally only to England, but it is available online to all who want to use it. It makes sense for all the Administrations to share that information and expertise, and to ensure that they make use of it when framing their own response.

We have previously discussed human papilloma virus in more detail in this Chamber and during an Adjournment debate on 13 January. My hon. Friend the Member for Mole Valley (Sir Paul Beresford) made many good points about the wider take-up of vaccination to reduce the incidence in females of that and other cancers, and in males. The HPV vaccine was introduced to tackle cervical cancer, which is why the strategy started with girls. He makes a good point about the potential benefits, which are well recognised, of extending that to protection against other cancers, particularly oral cancers.

Since 2008, more than 6 million doses of vaccine have been given in the UK with 87% of the routine cohort of girls completing the three-dose course in the 2011-12 academic year. I was concerned to hear the figure my hon. Friend mentioned from his own area. Hon. Members rightly come here to challenge Ministers about what we are doing, but when there is local information, I urge them also to challenge their local systems and to ask what it being done to bring them up to the national rate. We know that there are challenges about some of hard-to-reach groups, but I am surprised to hear the statistic my hon. Friend mentioned. I urge all hon. Members to recognise that we cannot drive the change solely from Whitehall, and that it is good if they also ask questions about accountability locally.

My hon. Friend referred to the fact that work is continuing through the Joint Committee on Vaccination and Immunisation to look at the matter in more detail. He said that the JCVI is also looking at adolescent boys and men who have sex with men, and highlighted the problem that they do not benefit from herd immunity as HPV vaccination is more widespread among girls. The JCVI is considering whether it is cost-effective to extend the programme to both those groups. The issue is complicated, especially concerning adolescent boys. The evidence base, mathematical modelling and deliberations will take time, but the work is ongoing and it helpful that the House continually expresses its interest.

I recognise that I have not responded specifically to some of the points made by my hon. Friend the Member for Lancaster and Fleetwood about pancreatic cancer, but I responded in the House only last week. I hope he will accept that it is not discourteous to say that my response has not changed substantially since then, but I took the actions I promised last week. He has put on the record his concern about the need to value the additional months of life in a disease that sadly takes people so quickly. Early diagnosis and GP training in that is critical in pancreatic cancer, which is so hard to diagnose. That is well recognised, and I thank my hon. Friend for making his point.

In the remaining few minutes, I cannot respond to all the public health issues raised, but smoking is a factor in so many of the cancers that have been discussed, as the shadow Minister said. Smoking in this country is at an historic low, and has dipped to below 20% of the population for the first time. There is a significant legislative programme and the shadow Minister said she hopes we will keep up the momentum. I assure her that I have no option given the programme that we must deliver in the coming year. I look forward to her co-operation. I also look forward to support from hon. Members in the Chamber when we introduce those measures in the House.

It is always good to remind people why leadership on smoking cessation and legislation is so important. It plays a role in prevention, which is important in many areas that hon. Members have highlighted this morning. There is a big role for leadership at local council level because the figures on smoking cessation are extremely patchy throughout the country. We must drive change at local level.

The hon. Member for Easington (Grahame M. Morris) referred to Gamma Knife, and I will respond to him in more detail after the debate if that is acceptable to him. I am sure he did not mean to say that NHS England is callous and cold. Clinicians must make difficult decisions every day on behalf of all of us in balancing competing health priorities. He used those words, but I know he did not mean them in connection with the people who must make the difficult decisions. Many of our clinicians and health leaders must perform difficult balancing acts. Just the challenges made to me as the Minister in this debate this morning would have an enormous cost. We must make difficult decisions all the time about where we can best spend resources to bring the best results for the population. I know that that is at the heart of hon. Members’ concerns.

I thank hon. Members who are present. Many are long-standing champions of particular issues in Parliament and I urge them to continue their awareness-raising work. NHS England will continue to respond to that, as will Ministers. I thank hon. Members for attending the debate this morning.

Care Bill [Lords]

Grahame Morris Excerpts

Monday 10th March 2014 Commons Chamber

[Paul Burstow]

My hon. Friend is absolutely right. That is the basis of the average fair rate, which I mentioned. New clause 15 would provide a mechanism for establishing a formula by which fee rates are set transparently for both domiciliary and residential care. The organisations representing the sector believe that that would lead to much greater transparency, and I think that it would deal with some of the rather toxic relationships that sometimes appear to exist, both nationally and locally.

New clause 2 is about older people, particularly the proposition that we should take a leaf out of the book of our colleagues in Wales and Northern Ireland in relation to having a commissioner for older people. Ageism and ageist attitudes are endemic in our society and, indeed, in public services. Our society is ageing, with life spans increasing, and that profound change will affect us all. It has implications for how the NHS and care services behave, but it goes far wider.

My new clause simply calls on the Government to work on the mechanics of establishing such a post so that there is someone to listen to and give a voice to older people; to champion their vital contribution to our economy—in work, as care givers and as volunteers, mentors and community leaders—rather than their being seen as burdens, which is how older people are all too often portrayed; to challenge the complacent and lazy stereotypes; and to hold public services to account.

Such a role already exists in Northern Ireland, Wales and other parts of the world. It would involve asking such questions as: why do the 360,000 cases of abuse suffered by older people every year lead to so few prosecutions, why are older people excluded from clinical trials and other research, and why do we stop reporting people’s cancer survival rates once they pass the age of 75? I hope that the Minister is open to the idea, and I look forward to his response.

New clause 26 deals with the issue of mental health, which came up very briefly in Committee. I know that the Minister is a passionate champion of mental health concerns. The new clause simply says that if a person has an accident—for example, breaks their arm—suffers a stroke or has a heart attack, the last place they would expect it to be sorted out is a cell in a police station, but that that is exactly where people who have a mental health crisis find themselves. The statistics are stunning: 36% of all people who are taken to a place of safety find themselves in a police station and stay there for more than 10 hours. Not only have adults been subject to that process, but 263 children, on the most recent figures. My new clause simply seeks to place a sunset provision on the definition of a place of safety, including a police station, which should create a way of concentrating minds to ensure that services are provided in the right place at the right time for children and adults.

I come to new clauses 7 and 9 last because they are about addressing what we might regard as the elephant in the room in any conversation about care services and the Bill’s noble intentions of improving the quality of care and of driving well-being into the heart of how care and support are delivered. The new clauses raise interconnected questions about the future funding of care and support, and about the independent nature of our health and care systems. Social care has for far too long—for decades—been the poor relation to health in decisions about public expenditure. Today’s funding challenges are chronic and are not simply the result of deficit reduction.

New clause 9 reflects the concern of a remarkable coalition of interests outside this place, including the Local Government Association, the Care and Support Alliance, hundreds of non-governmental organisations, directors of social services and chief executives, and many more besides. They all want to serve notice on the Government that they are concerned about the serious impact that the continuing pressure on local government spending will have on the ability of councils to deliver the care and support that everybody in this House wants to be delivered under the Bill. The picture is complex. Different councils are coping differently—some are overspending their care budgets and some are underspending them—but the trend is clear, despite the extra £7.2 billion that was allocated in the 2010 spending review and the transfer of money as part of the better care fund in the most recent spending review.

New clause 9 simply provides for an assessment to be made and signed off by the programme board that oversees the implementation of the Bill. It is not an unreasonable request that we check that the sums add up and that the money is sufficient to deliver what the Bill is about. I hope that the Minister will reassure us about how transparent that process will be. Impact assessments are one thing; this process would be another. I think that it would provide considerable reassurance to those who will have the job of implementing the legislation.

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

I apologise for breaking the right hon. Gentleman’s flow. I agree with virtually everything that he has said. On the need to ensure that the Bill does everything that it says on the tin, may I draw attention to the fact that when I met my constituent, Jason Roche, who is very active in the Royal National Institute of Blind People, he pointed out that 43% of blind and partially sighted people in England have lost access to adult social care services since 2005. Does the right hon. Gentleman agree that the Bill must address the needs of working-age adults who suffer from disabilities?

[Paul Burstow]

I am grateful to the hon. Gentleman for that intervention. He makes an important point. If one looks at the trends, one sees that there is no doubt that there are questions to be asked about why some people are not receiving the service that one would expect. Some of that—although I do not pretend that this covers anywhere near all of it—can be explained by the changes to the way in which services are organised. Some of it can be explained by the need to do more to re-able people and to enable them to maintain their independence. I do not say that to evade the question. That is why I have put new clauses 7 and 9 before the House. I genuinely think that whoever is in government in future will have to have a much more systematic approach to making decisions about how we meet demand.

That brings me on to new clause 7, which simply says that the Government should take a longer-term view. It states that every five years, the Government should look 20 years forward and take an independent assessment of the future demand for care and health services. That could be done by the Office for Budget Responsibility. It could provide modelling for the whole health and social care system that looks at the impact on demand, technology, demography and health status, and at the balance between all those factors. It could also look at the interactions between health and care, primary and secondary care, physical and mental health, and treatment and prevention. That would finally implement a recommendation that was made by Derek Wanless in his review for the Government in 2000. That is supported by the King’s Fund, which has suggested much the same thing.

In Committee, neither the Government nor the Opposition were able to make any funding commitments about part 1 of the Bill. I entirely understand why that is the case. However, we know that as the eligibility criteria are drawn more tightly, more people are excluded from help. In the long run, that does not save money, but shunts the costs. It pushes people away from living an independent life and towards a life of dependency. I hope that all parties will, in the end, sign up to something like new clause 7 as a good part of the future sound governance of our health and social care system. I hope that the Minister will support that.

I apologise to the House for speaking at such length, but I have put forward a number of issues that I hope will provide a framework for debating this important set of reforms. I look forward to the Minister’s response.

--- Later in debate ---

I did not serve on the Public Bill Committee, but I know that this matter was examined there. Warm words have been spoken, but I tabled the new clause because I hope to tie the Government down to a timetable. I want them to make some progress and report back in six months on what further legislative or regulatory changes are needed to make this portability of care a reality; I do not want this to keep being argued backwards and forwards, as has happened for such a long time. As my new clause is modest, I hope the Government may be prepared to accept it at this stage, so that six months after Royal Assent we will be coming back with practical steps that can be taken to move this on. In that way, I hope that people such as Mr Kenny will not in the future be faced with having this argued over their head, with their not being able in the meantime to have the care they need—care near to their family, which of course will probably, in the end, result in a saving to everyone.

[Grahame M. Morris]

I echo the sentiments of other hon. Members about the lack of time we have been allocated. I appreciate that it is not your fault, Madam Deputy Speaker, but we have so much to get through and the shortage of time means that although I would like to speak in support of a raft of amendments and new clauses, I will limit my remarks to a discussion of new clause 9.

I am supportive of the Care Bill—changes that make care simpler and fairer are to be welcomed—but there are real concerns about the sustainability of the changes this Bill seeks to make. I do not doubt the integrity and good will of the Minister of State, Department of Health, the hon. Member for North Norfolk (Norman Lamb), but with all the good will in the world the proposals in the Bill can be implemented successfully only if they are properly funded.

Other hon. Members have raised concerns about the funding implications, and the original Dilnot report, one of the foundation stones of the Bill, made it clear that insufficient funding would hamper the effectiveness of any attempts to implement reforms, including the ones in this Bill, and that long-term social care funding will work only if the current crisis in social care is addressed first. So we must not forget that the success of the Bill will be jeopardised by laying reforms over a system that is underfunded. I do not have time to go into the figures, save to say that adult social care budgets alone have been reduced by £2.7 billion over the past three years—that amounts to 20% of average council budgets.

The impact of such cuts is compounded by rising demand resulting from demographic changes. It has been estimated that to meet the demographic pressures the nation needs to spend another £400 million a year. So local government has real concern that the implementation costs and ongoing running costs of the reforms being implemented through this excellent Bill have not been fully costed and will not be funded, other than as new burdens.

It is unacceptable—and it will damage public confidence and trust—to pretend that new standards will be able to be met if the resources are not in place to deliver them. That is why it is so important that an additional reporting mechanism is in place, such as new clause 9 would establish, to provide assurance that the social care system and reforms in the Bill are adequately funded. If the Government really intend the Bill to be their flagship piece of legislation on social care, we need to know that the numbers add up. Despite councils’ best efforts to protect front-line services, the reality of cuts on this scale has meant that adult social care has not been immune to their impact.

A number of hon. Members have indicated the scale of the impact in their own areas, but the eligibility criteria level for social care has risen dramatically across a range of authorities. It is unclear how the new eligibility threshold will work in practice, both in terms of the effectiveness of care that older and disabled people will receive and the impact that the threshold will have on local government finances. But it is a concern that an eligibility threshold set at “substantial” will, as the hon. Member for Totnes (Dr Wollaston) has said, fail to create a preventive care system—that is what we all want, along with well-being.

A failure to create a preventive care system could result in a false economy in the long term—my hon. Friend the Member for Leicester West (Liz Kendall) mentioned the figures from the Deloitte study. By not delivering the £1.2 billion of investment needed to lower the national eligibility threshold, central Government could be missing out on savings as great as £700 million. The well-being principle of the Bill will fail to become a reality as many old and disabled people will be ineligible to have their needs met, so it is important that the effectiveness and sustainability of the eligibility threshold is reviewed and changed when appropriate.

We have a unique opportunity to improve care, which is why I am in favour of establishing the joint care and support reform programme board set out in our new clause 9, which provides for a report on performance and implementation. A failure to do so could render the well-intentioned reforms in the Care Bill meaningless.

[Bill Esterson (Sefton Central) (Lab)]

Social services are under huge funding pressure, which has a knock-on effect on the NHS. New clause 9 highlights the crucial issue of funding and will contribute to addressing it. Just 10 days ago, I experienced at first hand those pressures on the NHS. I would have added my name to this new clause, but I was unable to be here because I spent three days in Southport and Formby district general hospital. I saw the pressures in the accident and emergency department resulting from beds not being available for the transfer of patients to the wards; the pressures arising from chronic staff shortages; the difficulty in helping patients to return home because of a lack of support in the community; and general practitioners sending older people to A and E with complex needs as there was a lack of other choice or care available. In large part, the cuts in social services funding meant that I saw all those things. Meanwhile, staff in the NHS are working incredibly hard, often doing double shifts to look after patients, for which I am extremely grateful, as are many others. I take this opportunity to thank them and everybody in the ambulance service for what they did for me and have done for many other people.

The evidence I collected during those three days shows just why we need to be confident that funding is in place. Unless the funding is adequate, both in social care and in the NHS, the challenges faced day by day, hour by hour in our NHS will grow worse. We need greater integration, provided through the all-party approach advocated by Sir John Oldham in the report by his Independent Commission on Whole Person Care. As the report says, practice needs to move on so that we can see more care provided at home, with professionals working closer together in the interests of the individual. The whole-person care approach would reduce the number of hospital admissions; it would keep more people at home for longer, reducing hospital admissions and avoiding the huge pressures that I witnessed. In the context of the Bill, we need to be confident that the funding is sufficient to deliver the new responsibilities, which is why we tabled new clause 9. I hope that Members will support it this evening.

New clause 19 calls for health bodies to promote the health and well-being of carers. As the independent commissions report states:

“Most care is delivered by people themselves and their families.”

That makes the health of carers vital. My dad cares for my mum, and his health is a major concern. Carers up and down the country face declining health as they care for loved ones. Caring for the people who care is also a vital aspect of care provision, and paid staff in the health and social care sectors are also carers. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) talked about priority treatment going to volunteer carers—family members, friends and other volunteers. We should also consider that approach for everyone who works in the NHS or in social care. If we read the new clause in its widest sense, we should consider paid carers too, be they in the NHS or in social care.

Some 1.3 million people work in the NHS, and 1.5 million in social care. We should promote the health of NHS and social care staff as well as that of unpaid carers who do a fantastic job up and down the country. I hope that new clauses 9 and 19 receive the support of the House.

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[Nick Smith]

I assure my right hon. Friend that the new clause refers to all adults, so takes on board the people he mentions.

Subsection (4) of the new clause seeks to strengthen protection. It would ensure that, if abuse were found to have an element of corporate responsibility, and if systems or the approaches taken by the care provider are a contributory factor in the abuse or neglect, the new offence would allow the prosecution of a registered care provider. The Government have the opportunity to shape the culture of the care sector in the Bill tonight.

[Grahame M. Morris]

In Committee, the Minister said that he supported the sentiment of the proposal. Does my hon. Friend accept that, although the new fit and proper person test and the new fundamental standards are important, they do not make provision for a custodial sentence for proprietors, managers and directors of such establishments in such cases?

[Nick Smith]

My hon. Friend has got to the nub of the issue. Managers and directors of organisations such as care homes have to accept that they set the culture of those places, and that they are responsible for looking after the residents in their care, and for avoiding neglect and abuse. If they get it wrong, they should face the possibility of a jail sentence. That is what the new clause would do.

We must go that extra mile to ensure that our safeguards deliver for care home residents. New clause 27 would greatly help that cause. I intend to divide the House on the measure.

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[Mr Dorrell]

I agree with the thought that my right hon. Friend identifies. I have been choosing my words with care—I hope—in inviting the Minister to chart a course towards a more joined-up concept of commissioning. Almost as I offer my critique of the commissioning structures, I can feel officials in the Box writing the next version of the legislation that will have another go at providing the perfect solution to deliver something that is better than we have ever dreamt up before. I emphasise that what I am looking for from the Minister is a route map or journey—a process, not an event—and preferably one that builds on existing institutions rather than committing what I regard as the mistake of starting again with a clean sheet of paper.

[Grahame M. Morris]

The idea that the right hon. Gentleman propagates, which he has long held—that fragmentation is a bad thing and integration and joined-up services are a good thing—is one that I subscribe to, but does he share my concerns at reports that the commissioning functions through the clinical commissioning groups are to be privatised? Is that likely to make for more joined-up services or greater fragmentation?

[Mr Dorrell]

The hon. Gentleman knows that I do not entirely share his concern about who holds the share certificate for a particular service. I am more concerned about the accountability of a public authority for the use of public money to deliver a public service. On that, the hon. Gentleman and I are probably as one. I am also concerned that the system, from the perspective of the patient and service user, does not rely on them finding their way under their own steam through an impenetrable morass, but is designed with their needs and instincts in mind. That is a test that our current system simply does not pass and has not passed for many years.

--- Later in debate ---

I want to say at the outset that, in my view, the care.data programme is good news and offers a great deal to help to improve our country’s health and care system in a gradual and progressive way. Care.data is evolution and not something fundamentally new. We started to collect hospital episode statistics for in-patient data in 1989, for out-patient data in 2003 and for accident and emergency data in 2007-08. The aim is to add primary care data to that list in 2014.

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

I have not said anything controversial yet, so if the hon. Gentleman will let me make some progress, I will happily give way later.

To realise the huge potential of health care data, patients and professionals must have absolute trust in the way that the data will be protected and used, together with an understanding of why collecting the data on such a scale is important. I absolutely understand that many people have concerns about how the process might work, but I am confident that the Government amendments will bring further reassurance to the House about the care.data programme.

The Government fully support NHS England’s decision to delay the start of the care.data programme so that more work can be done to build understanding and confidence. NHS England will be leading that work. In parallel, having listened to key stakeholders and to discussions in this place, the Government have brought forward a package of measures, including amendments to the Bill, to respond to concerns and to give the public greater clarity and reassurance that their data are safe.

The Health and Social Care Act 2012, which established the Health and Social Care Information Centre, introduced a raft of safeguards to balance the huge benefits that linking health and care data can bring. That offered people greater protection than was previously available. It is worth highlighting some sections of the 2012 Act as examples of that.

Under section 260, the Health and Social Care Information Centre must not publish the information that it obtains in a form that would enable an individual, other than a provider of care, to be identified. Similarly, under section 261, the HSCIC cannot disseminate share data that could be used to identify an individual, other than a provider of care, except when there is another legal basis for doing so, which could happen in the event of a civil emergency or public health emergency, such as a flu pandemic. Under section 263, the HSCIC must publish a code of practice that makes it clear how it and others should handle confidential data. Under section 264, the HSCIC must be open and transparent about the data it obtains by publishing a register with descriptions of the information. Indeed, the HSCIC is currently working to ensure that it is transparent about all the data it has released to others.

Moreover, the Government have made the commitment that if someone has concerns about data being used in this way, they can ask their general practice to note their objection and opt out of the system. Following that, no identifiable data about them will flow from their GP record to the HSCIC. Directions to the HSCIC under section 254 of the 2012 Act—separate from the amendments that the House is considering—will ensure that that commitment to patients has legal force.

We are going further than that. Having listened to key stakeholders and to discussions in Parliament, we have a further package of measures that, in parallel with NHS England’s further engagement activity, will respond to the concerns that we have heard and give the public additional reassurance that their data are safe. Of course, aggregated and anonymised data, which cannot be used to identify any individual person, should and will be made generally available. Indeed, a great deal of research relies on data of this type, where researchers do not need to see any data at the individual person level. Such aggregated and anonymous data are available now, and were available previously through the predecessor body to the HSCIC.

New clause 34 sets out a number of changes to the 2012 Act which, taken together, clarify when the HSCIC can and cannot release data. The new clause expressly prevents the HSCIC from using its general dissemination power where there is not a clear health care, adult social care or health promotion purpose—for example, for commercial insurance purposes. I am happy to confirm that the new clause enables anonymised information to be disseminated under the HSCIC’s general dissemination power for a wide range of health and care-related purposes, including for commissioning for a wide range of public health purposes and for research relating to health and care services such as the epidemiological research that is needed at the earliest stages of developing new treatments.

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[Barbara Keeley]

rose—

[Grahame M. Morris]

rose—

[Dr Poulter]

I am not going to give way. I am still addressing the hon. Lady’s point, and I am not saying anything controversial. If we had had better, more joined-up data that could have been used in a more transparent way beforehand, we might have been able to head off the events that we saw at Mid Staffs much earlier. This is about protecting patients and the public, and about using population-level data in an open and transparent way. Under the safeguards that we are introducing in the new clause, data will not be used for commercial insurance purposes. Let me give that reassurance.

--- Later in debate ---

[Dr Poulter]

Hopefully, if I am allowed to make some progress and address the points that have been raised, I will give further reassurances a little later. It would be useful—[Interruption.] I will answer the question a little later, so there is no point in heckling or being abusive. If the right hon. Gentleman will wait, I will talk him through the Government’s amendments so that he can gain a better understanding —

[Grahame M. Morris]

Will the Minister give way?

[Dr Poulter]

No, I will not.

[Grahame M. Morris]

Are you afraid?

[Dr Poulter]

No, I am not afraid to give way. The hon. Gentleman should sit down, because he often has quite enough to say, and it is not always a very valuable contribution. In this context, he may do well to listen to some of the purposes of the amendments. As I have already outlined, there are strong safeguards set out in the 2012 Act on how data can be used. Data can be used only for the benefit of the health and care system. In order to reassure the public, we have tabled amendments to clarify further how data may be used.

Speaking to a great many people in recent days, as well as considering amendments tabled by other Members, has prompted the Government to re-table the new clause in order to clarify that these kinds of data may also be disseminated for other wider public health purposes, such as research into environmental factors associated with asthma, or for healthy eating. We have ensured that those other kinds of research can benefit from the data by changing the wording in the new clause to make it clear that information may be disseminated for the purposes of

“the provision of health care or adult social care”

or “the promotion of health”. I am sure that the House will agree that it is essential that that valuable data resource is available to support a broad range of health research.

New clause 34 clarifies that in disseminating information, and indeed in carrying out any of its functions, the Health and Social Care Information Centre must have regard to the need to promote and respect the privacy of those receiving health services and adult social care in England. It also requires the HSCIC to take into account advice from the advisory committee that the Health Research Authority is required to appoint under paragraph 8 of schedule 7 to the Bill. The advice from that committee, known as the confidentiality advisory group, will provide a new level of independent scrutiny of the HSCIC’s decisions to publish or disseminate information.

Amendment 17 would also enable the confidentiality advisory group to advise the HSCIC on the exercise of functions conferred in regulations under section 251 of the National Health Service Act 2006, or more generally on decisions to disseminate information that could be used to identify individual patients. For example, when new regulations are made under section 251 of the 2006 Act that confer functions on the HSCIC, the confidentiality advisory group could advise the HSCIC on proposals to release data. New clause 34 requires the HSCIC to have regard to that external advice on its exercise of any function under the 2012 Act of publishing or otherwise disseminating information.

Amendment 18 gives the Secretary of State regulation-making powers to set out the specific criteria that the confidentiality advisory group will be required to take into account in giving advice to the Secretary of State, the Health Research Authority or the HSCIC in carrying out their duties. That provision is intended to enable regulations which would require that the confidentiality advisory group considers: that the purpose for which the data will be used should be in the public interest and for the provision of health and care services; that any approved processing must respect and promote the privacy of patients and care service users; that the purpose cannot be achieved using suitably anonymised data, rather than identifiable data; that it is not reasonably possible to gain explicit patient consent to achieve that purpose; and that the applicant requesting the data has not misused those kinds of data in the past.

That last criterion would effectively introduce a new “one strike and you’re out” deterrent. Potentially, for some organisations, the risk of no longer being able to access those kinds of data may prove a more effective sanction than the current maximum monetary penalty of £500,000 that can be imposed under the Data Protection Act 1998. Taken together, those measures provide an additional level of scrutiny and assurance to the processes of the HSCIC in publishing or disseminating information. The Government’s amendments—new clause 34 and amendments 17 and 18—provide robust assurance that those kinds of data cannot be disseminated for purposes such as commercial insurance or for assessing an individual’s mortgage application.

--- Later in debate ---

[Dr Poulter]

Indeed, Mr Speaker, and I hope that other Members will also be sensitive to that. The more interventions I take, the less opportunities there are for Members to speak. I have been very generous. I have taken interventions on a number of occasions from those on the shadow Front Bench, and from the hon. Member for Worsley and Eccles South (Barbara Keeley) and others. I have been generous with my time, but I want to preserve time for other Members to contribute to the debate, as I see you are keen for me to do, Mr Speaker.

Although the HRA amendments are important in ensuring that its remit is clearly and accurately defined, it will be able to work with those with an interest in children’s social care research when research crosses boundaries, to seek consistency in standards and to avoid unnecessary duplication.

Government amendments 15 and 16 are minor and technical. Amendment 15 is consequential to the addition of provisions on the better care fund—part 4—in Committee. It ensures that provisions on commencement cover the better care fund. Amendment 16 removes the privilege amendment inserted in the other place in accordance with the Commons’ sole privilege to deal with monetary matters.

The Government’s proposals ensure that we correct the difficulties we inherited from the previous Government in preserving confidential patient data. They ensure that we have in place a system in which NHS and care data must be used for the benefit of the health and care system and for public health purposes. They put us in a much better place to ensure that we enhance transparency and better use information to benefit patients. They ensure that we have a better basis on which to understand the basis of disease. If in the first place we had had the Health and Social Care Information Centre and the benefits we know will come from care.data, we would have been able to deal with and better combat many diseases while protecting patient confidentiality. We would have understood much more quickly the dangers of thalidomide and other drugs that were harmful to babies in utero. We would have been in a much better place to expose those examples of poor care, such as Mid Staffs; to develop national frameworks for treating diseases such as chronic obstructive pulmonary disease and heart disease; and to understand what good care looks like in the treatment of those conditions by collecting data in a fundamentally better and joined-up way.

The Health and Social Care Information Centre will, for the first time, provide us with a repository for joined-up, integrated data across health and care. Hon. Members often rightly talk of integrated care, and of the benefits of joining up health and care. Unless we have the data collected to understand what good integrated care looks like, and unless we understand what measures of integration are right, we will not be able properly to inform the debate on delivering integrated care or break down the silos that have sometimes existed to the detriment of patients across the health and care system. I hope hon. Members on both sides of the House can support that. I hope they decently recognise that this Government have put in place not just a patient opt-out if they do not want their data to be shared, but strong safeguards—much stronger safeguards than the previous Government —to protect patient confidentiality.

[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.

[Andy Burnham]

To add to the theme that my hon. Friend is developing, is not one of the problems with care.data that we have had so many statements from Ministers and officials that have not in the end come to be true? At the last Health questions, the Secretary of State said that a leaflet would be sent to every home in the land to explain what was happening. That also was not true. Does my hon. Friend agree that this is bringing the whole scheme into disrepute?

[Grahame M. Morris]

My right hon. Friend has hit the nail on the head, because there has been a catalogue of mismanagement. What we need to do if we believe in the importance of such a database is to ensure that we rebuild public trust. The Government have an opportunity to do that, but it will not be a simple matter. We have to look carefully at the implications of what the Government propose and give the necessary assurances.

The assurance that the official gave to the Health Committee had a gap that a coach and horses could be driven through. Several multinational companies could get round it by establishing a subsidiary based in the UK that would have access to the data, if that were the only safeguard.

[Mr Dorrell]

I want to return to a theme that we were discussing in an earlier debate this evening. The true nature of the hon. Gentleman’s concern is unclear. If his concern is that sensitive patient information should be made available only on the basis that the identity of the individual can never be traced and the data remain properly anonymised and confidential, I think that concern would be shared on both sides of the House. But is that his real concern, or is it that the information might be used by a private sector body for the purpose of improving the delivery of health care? I am not clear, provided that the information is anonymised and patient identity is properly secured, what his objection could be.

[Grahame M. Morris]

I thought I was being fairly clear. In the debate on the earlier group of amendments, we discussed the privatisation of the clinical commissioning function. My concern is that that would lead to greater fragmentation, not greater co-operation. On data sharing, I think it was my hon. Friend the Member for Leicester West (Liz Kendall) who gave the example of a questionnaire she was asked to fill in by her GP, which contained questions relating to alcohol consumption, smoking and so on. If that information was made available to a private health care company and, as a consequence, premiums were increased, people would have concerns. The Minister said that that has been ruled out and that it would not happen, but it is an example of why such concerns have been raised.

[Oliver Colvile (Plymouth, Sutton and Devonport) (Con)]

It is very important for there to be as much protection for the individual and the patient as possible. I assure the hon. Gentleman that my medical records are particularly uninteresting, but I would not want them to be leaked to an insurance company seeking to make money out of them or trying to change my premium. I am sure that that is very important in people’s minds.

[Grahame M. Morris]

The hon. Gentleman makes an interesting point which echoes a point made on the Labour Benches a few moments ago. The problem is that a number of private health care companies are also insurance companies, so it would be quite a task to ensure that data are not shared with companies that might have a commercial interest in them. To restrict access in the way we would all want is not as simple as the Government would have us believe.

[Andrew George]

The hon. Gentleman and I often agree on these issues, but I am slightly concerned. Of course we want reassurances, and while we have the pause we should seek further reassurances on the anonymisation of data and that they will not be misused. How far is he prepared to push this point? Is he prepared to push it to the extent that the initiative falls, with all the consequences for the lack of progress in advances in medical care? In 10 years’ time we could be talking about hundreds of thousands of lives that could have been saved as a result of pressing on with this very important development.

[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.

[Mr Jamie Reed]

My hon. Friend is making an excellent, intelligent and informed speech. The charge has been made that pushing our proposals too far risks scuppering the project, but is it not the case that the more safeguards we can introduce to reassure the public, the better the prospects of its success will be—and, moreover, the greater the data sample will be, and the better the system will be as a result?

[Grahame M. Morris]

I entirely agree. I think that that is vital, because, as we have seen in the case of politicians following the expenses scandal, once public trust has been lost, it is a huge task to win that trust back. There is a mountain to be climbed. I therefore think it important that we get this right.

The Government have an opportunity to pause the implementation of the Bill in order to consult properly, and, in the Bill itself, to address issues that have been raised by Members in all parts of the House and by other interested parties. I believe that if there is to be public confidence in the scheme, the Government should make a gesture by supporting Labour’s new clauses, particularly new clause 25. Given that the misuse and identification of data are the prime concerns of the public, I think that it would be eminently sensible to make them an offence. That is not rocket science, is it? If that is the problem, why do we not address it directly by creating an offence? Similarly, if an organisation makes applications for data from the Health and Social Care Information Centre, it should have to disclose any previous convictions under that offence. I am a big supporter of transparency and the extension of freedom of information. Private health care companies should disclose information that is relevant in those circumstances.

It seems bizarre to insist that the public should allow their private information to be shared with organisations that are allowed to hide their chequered pasts in some cases behind the cloak of commercial confidentiality. Parliamentary accountability, too, should be introduced to the decision-making process. The Secretary of State should retain the duty to approve any applications. The buck should stop with the Secretary of State. If there is a serious commitment to win back the public’s trust on care.data, the buck should stop with the Secretary of State, rather than with a big and unaccountable quango.

It would be of great benefit to the public if data sharing were exercised in an accountable and secure manner. I have always been an advocate of investment in public health. For that to be effective, we need an evidence base on which to plan interventions. The scheme is set to be disrupted unless the Government can demonstrate that they are serious about protecting patients’ privacy.

[Oliver Colvile]

Does the hon. Gentleman think that there will be a problem with patients sharing that information with their pharmacists if that meant that they were going to get better more quickly?

[Grahame M. Morris]

On an individual basis, I do not see a problem with that. The problem arises when dealing with large volumes of harvested data that include not just primary care records of patients in the community but hospital records, where pharmaceutical companies are perhaps able to benefit. Whether that is in patients’ best interests needs further consideration. I do not think that there is any such concern about individual conversations with GPs or pharmacists, but there are still major holes in the Government’s proposals. They need to be tightened further. A good starting point would be Labour’s new clause 25.

[Paul Burstow]

The hon. Gentleman has been incredibly gracious in giving way on several occasions. He has said that new clause 25 should be commended. I wonder whether he has considered amendment (b), which suggests that one of the other issues about safeguarding data is people being satisfied of the competence of the organisations that will receive that data and that they comply fully with the data protection obligations.

[Grahame M. Morris]

I have considered that, and that is an important point. Compliance is important. Those issues should be addressed in the Bill. If we are to ensure that there is public trust, those points must be addressed.

[Mr Jamie Reed]

Does my hon. Friend share my concern and that of many GPs that the lack of necessary safeguards in the Bill may have an unintended consequence, particularly among the hardest to reach groups in society? Fear about the lack of safeguards in the Bill may stop them from accessing GPs and sharing their details and problems with them.

[Grahame M. Morris]

That is a huge danger. We have an opportunity to address that in this House this evening and when we consider the Bill further tomorrow. I personally am not advocating that people sign up to the opt-out clauses. That is important, but we need assurances to be able with confidence to support the Bill and the data collection proposals.

[Several hon. Members]

rose—