Care Bill [Lords]
Debate between Baroness Keeley and Sarah Wollaston(11 years, 3 months ago)
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Dr Sarah Wollaston (Totnes) (Con)
I love medical data. They have undoubtedly saved my life and the lives of almost everybody in the House. Medical data, particularly big data, allow us to identify which drugs and procedures work and which do not work. They enable us to pick up the rare side effects of medications that have recently been released on to the market before they can wreak the kind of havoc that we have seen in the past. They enable us to identify which are the good hospitals and which are the failing hospitals. They allow us to identify which clinicians need serious retraining and from which clinicians the public need protection.
I would argue that evidence-based medicine is one of the greatest advances of our age. Evidence-based medicine works a lot better if we have access to big data. I state for the record that I do not intend to opt out. I hope that the Government will use the six months that we have to mount a clear campaign to the public that sets out just what the possibilities are.
I also feel that some of the concerns about releasing big data to pharmaceutical companies are misplaced. We need our pharmaceutical companies to be able to access those data, and there is a virtuous circle. We know that if we attract more research to the UK, not only will that benefit our universities, it will create more employment.
Barbara Keeley (Worsley and Eccles South) (Lab)
My honourable colleague from the Health Committee mentions pharmaceutical companies. Does she feel it is appropriate—we touched on this in the first part of the debate—that insurance companies have access to hospital data? As I said yesterday, BT now has access to our hospital patient data on the cloud systems in the United States. Does she think that those uses are concerning, and what should we do about them?
Dr Wollaston
That is absolutely correct and I will come to those points later in my remarks. The public did not expect to see their records uploaded to insurance companies, specifically where that resulted in higher premiums for many people.
We have a virtuous circle of improving access to data for our universities and creating high-quality jobs within the industry. If we can attract research to this country, and it is carried out among the UK population, the results from that research will be more relevant to the British population. Also, less research will be carried out in circumstances that are ethically questionable or with oversight that may not be up to the standards we expect in this country, or that sometimes exploits people in developing countries and where we cannot be sure of the accuracy and reporting of that research.
This is a virtuous circle, but I am afraid it has unfortunately been broken by the oversight and some of the arrangements that have taken place in NHS England and the Health and Social Care Information Centre. It is frankly beyond me that nobody has assumed responsibility for destroying the trust in what should have been the most exciting advance that would have benefited countless hundreds of thousands of people, not only now but in the future.
On the six-month delay, I call on the Minister to set out clearly how we will campaign to inform the public of the benefits of the proposal, but also of the risks. We have seen a rather patronising approach that has assumed the public will not notice or care about those small risks, but they are there and we must set out clearly what they are and how they will be addressed and minimised. There is much more we can do to minimise those small risks.
Of course we need transparency about past errors; the performance of NHS England and the Health and Social Care Information Centre in the Health Committee was disappointing. I am glad that on its website, NHS England has now clarified that Sir Nick Partridge, former chief executive of the Terrence Higgins Trust, will conduct an audit of all previous data releases by the NHS information centre—the predecessor body. We are also expecting the release on 2 April of all the data released by the current body. I understand that that will set out the legal basis for those releases, but also their purpose, and that goes to the heart of my amendment.
We must have clear penalties for breach, not only in the provisions in the Bill, but across the whole NHS and social care sector. The Minister will know that in practice, if somebody wants to snoop on someone’s personal medical data, there are far easier ways to do it. He will also know that the penalties are derisory. In a well-publicised case in December 2013, a finance manager at a general practice had been deliberately snooping on the records of thousands of patients within the practice, and focusing—rather disturbingly—on one young woman he had gone to school with and her family. Those were repeated breaches of her and her family’s privacy in a really toxic way. That individual was fined only £996. The public need to be clear that there will be severe penalties not only for individuals who deliberately breach privacy, but for companies. A fine of £996 for an insurance company or a large body is laughable.
Dr Wollaston
I agree with my right hon. Friend. Free text takes us into a different territory. People say things in free text to their doctor knowing that it will not appear in a coded form.
There are other ways in which we can improve reassurance for the public. Perhaps we could pseudonymise data before they leave the practice, which would introduce another important layer of protection. That suggestion has been made to the Minister on a number of occasions.
Barbara Keeley
The hon. Lady was in the Chamber yesterday when I talked about the cloud systems using NHS patient data launched in the States. What disturbed me about that was that the commercial companies involved said that the data—our patient data that they were using—included clinical data, demographics, education and income. That provided a context, and the companies could link episodes throughout a patient’s life. People would be disturbed if they understood that companies charging for usage in another country had linked their data in that way and had almost a lifetime’s coverage of people’s medical records.
Dr Wollaston
Linking primary and secondary care data is so important, but the purpose to which it is put is at the heart of the matter. To whom are the data released? If data are uploaded to Google—27 CDs of our database—and leave the premises, we have no control over them. We could not apply in the States the controls and sanctions I have described. It is simply not good enough to be reassured that the data will not be handled by Google staff. What is to stop them accessing the data when they have gone offshore? The hon. Lady is right to make that important point.
My amendments are about improving the situation in two ways, the first of which is on the purpose of the information. Will the Minister consider adding the word “improving”? He might be concerned that, if the wording is “improving health and adult social care”, the Bill could restrict open research. I do not agree. He will know that improving the care of patients is fundamentally the purpose of research. The amendment would therefore not restrict open research. The amendment would put beyond doubt the fact that the fundamental purpose of releasing data to, for example, insurance companies or Genomics UK, is improving care. People would see that the data release is not for a fundamentally commercial purpose to benefit a commercial organisation without a necessary link to improving care for people in the UK. Those questions should be asked at every stage of the process.
It was reassuring yesterday to hear the Minister clarify that insurance companies will be specifically excluded. However, there is no reassurance in the existing wording in respect of other organisations, including, for example, the Department for Work and Pensions. We can see how the case could be made that disseminating information to the Department for Work and Pensions is for the purposes of
“the provision of health care or adult social care”
or “the promotion of health”, which is the existing wording of new clause 34. As he knows, the longer somebody is off work with, say, lower back pain, the less likely it is that they will ever return to work. The Department for Work and Pensions could argue that disseminating information is all about improving care, but in fact, the fundamental purpose might be altogether different. If the principle in the Bill is that information dissemination is clearly about “improving” care, it would focus people’s minds on the underlying purposes when they make appraisals about whether their information should be given out. That could happen without disadvantaging primary medical research access to the information—the principle of improving care would clearly be at stake. I hope the Minister considers adding the word “improving” to the Bill.
My amendment (b) would mean that there is a reassurance in the Bill on how the data are handled by the person receiving them. We have the reassurance of the confidentiality advisory group, but including a responsibility and a duty in the Bill not just for those giving out the information but for those receiving it would be helpful. I ask anyone following this debate to hold their fire and not to be distracted by those who are rather jumping on the bandwagon on this issue and seeking to undermine the fundamental principles behind care.data. Those principles are important and we could save countless hundreds of thousands of lives in the future by having good access to medical data. But it simply will not do to gloss over the very real concerns that have been expressed. We will see the same problems arising six months down the line unless those very real concerns are addressed. To those who are following the debate, I say, “Do not opt out.” Let us give the Government, NHS England and the Health and Social Care Information Centre the opportunity to address those real concerns and to put them beyond doubt. I will not opt out and I hope that others will join me.
Barbara Keeley
Indeed it is. There is a question about why CCGs have to have identifiable patient data, and there is a lot of concern about that, which my hon. Friend is right to raise.
We expressed our concerns, but they have been compounded by reports of use of data unknown to the public. The Minister was unwilling to answer the point I wanted to put to him earlier in the debate about how the HSCIC will treat organisations such as BUPA, which are insurance providers as well as providers of health and care. I hope that he will answer that question when he winds up the debate. BUPA is one example, but there are other companies that have multiple functions—some of them are straightforwardly commercial and others involve health and social care—and there is scope for confusion if those firms apply for and obtain access to the data.
The revelations we have already had show that HSCIC does not have accountability, transparency or sufficient control over releases of patient data. In our Committee inquiry, it was put to HSCIC and to NHS England that one of the ways being recommended to ensure that escapes of patient data did not happen, and to allay the fears and concerns we have expressed, was for HSCIC to run on the basis that it kept the database intact and did not download datasets outside the information centre. What it did was take in research queries and ran them. That would be much safer and that is what is done on secure systems in other places. A mechanism has been suggested and I hope it is being considered.
I appreciate the comments made by my colleague, the hon. Member for Totnes about not opting out, but a recent survey of 400 GPs found that 40% intend to opt out of the scheme because of a lack of confidence in how the data will be shared.
Dr Wollaston
Does the hon. Lady agree that we have an opportunity, in the next six months, to provide reassurance on some of these real concerns? Does she share my hope that GPs will change their position and that we should be doing everything we can, as opinion-formers, to encourage them to do so?
Barbara Keeley
I would like to think so, but I am not going to hold my breath. I think I am a lot more pessimistic than the hon. Lady. Indeed, we know that some GPs have been so alarmed that they want to opt their patients out of the scheme. They should be able to do that without penalty. It is up to Ministers, NHS England and HSCIC to rebuild that confidence, but they are not doing so at the moment. They seem to see what is going wrong as a communication or public relations problem. It is not a communication or PR problem; it is a very serious problem with regard to the integrity of what they are doing, and a lack of transparency and accountability. We cannot say that enough times.
Care Bill [Lords]
Debate between Baroness Keeley and Sarah Wollaston(11 years, 3 months ago)
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Barbara Keeley
In introducing new clause 3, the right hon. Member for Sutton and Cheam (Paul Burstow) said how he felt that the NHS institutionally must change to identify and support carers. Of course I agree with that. My hon. Friend the Member for Leicester West (Liz Kendall) introduced new clauses 19, 20 and 21. She mentioned my private Member’s Bill, which I feel is having its last outing today in these new clauses; it proposed measures on the identification of carers. I want to touch on how long these issues have been around.
Eleven years ago, I completed a project on identifying and providing support for carers and co-wrote a report on that. The report made recommendations to Government, NHS bodies, GPs and their teams on how important it was to identify and support carers. That project mapped 36 primary care support initiatives for carers run by the Princess Royal Trust for Carers. We are talking about a long time ago. We felt that the role of carers, including their contribution to the work of the NHS, had generally been under-recognised and under-valued.
Through the 1990s, to the point where I wrote that report, we had carers assessments following the excellent Carers (Recognition and Services) Act 1995, introduced by Malcolm Wicks. That was strengthened by the Carers and Disabled Children Act 2000, which enhanced the carer’s right to an assessment. We even had in 1999 standard 6 of the national service framework for mental health, which said:
“all individuals who provide regular and substantive care for a person on the Care Programme Approach should have an assessment of their caring, physical and mental health needs, repeated on at least an annual basis”.
Even at that point, the Department of Health said that the implementation of the carers’ right to an assessment four years in was
“patchy. Assessments are not always carried out. Some carers are offered very sensitive practical and emotional support. But others receive very little, or no help”.
Fast-forward 15 years to the Care Bill, and carers are still in a similar situation. The identification of carers and referring them to sources of advice and support is still not happening on an adequate scale, and we have had all that legislation and good practice. Carers UK has told us that two thirds of carers that it surveyed said that, although their GP knew they had caring responsibilities, their GP did not give them any extra help. We have heard examples of what that can mean.
Carers week is in June, and we look forward to that. We know that in that week we meet carers at events. There is a common theme: they tell us repeatedly they are not getting advice and information to help them care. They can be carers of people with cancer, carers for people with terminal illness, carers of people with Parkinson’s or of people with dementia. Does the Minister want to start changing that for carers week this year? Does he want to go along to carers week events and have carers start to say to him, “I have been identified by my GP and my GP does recognise my caring role”? I hope he does, because I have heard so many people say how much it would have meant to them and what a difference it would have made to their caring if their GP had recognised it.
Even for conditions such as Parkinson’s, only one in 10 carers has been offered an assessment. These are people who are caring very often more than 50 hours a week, and, as a disease such as Parkinson’s progresses, up to 24 hours a day. They and the people caring for somebody who has had a stroke or who has dementia are the people who really need advice, support and breaks. These are the reasons we must support new clauses 3, 19, 20 and 21.
The Care Bill puts great emphasis on carers assessments rather than on the identification of carers, and I introduced a private Member’s Bill on that in September 2012. The clauses in that Bill, which we see again today, would have ensured that NHS bodies had procedures in place to identify carers and to promote their health and well-being and ensure they receive information and advice. I believe the key reason in identifying carers should be because we have a concern for their health, particularly those with the heaviest caring commitments. That is one in five of all carers, and that is more than 1 million people, which is just too many.
Those caring for more than 50 hours a week are twice as likely to suffer ill health, particularly those caring for a person with dementia or stroke. My right hon. Friend the Member for Salford and Eccles (Hazel Blears) has just talked to us meaningfully and movingly about the impact of that caring role on her family. We want early identification and support for those carers so they can maintain their health and manage and sustain their caring role. I agree with my right hon. Friend that they should be fast-tracked for appointments. As hopefully we move towards integration and, beyond that, whole-person care, local authorities cannot be expected to act alone to identify and support carers.
As has been touched on in this debate, we also have to face the fact that the number of people receiving social care services is shrinking. In Salford this year, because of budget cuts, 1,000 people are going to lose their eligibility for social care services and 400 people who would have become eligible for care will not become eligible. The unpaid carers in those families will be taking on that substantial burden, yet, sadly, the GPs and doctors around them will not identify them, will not help them, will not make sure they get advice and support.
This Care Bill is the place to make the change, and I say to the Minister let us not wait another 15 years to make the change and place such a requirement on health bodies—and schools, universities, colleges and further education colleges in the case of young and student carers. Let them just have policies in place to identify carers and to provide support for them.
Dr Sarah Wollaston (Totnes) (Con)
I would like to speak briefly to new clauses 1, 26 and 9. I hope new clause 1 on the adult safeguarding access orders would rarely ever be necessary because, as the Minister knows, the vast majority of carers are out there day in, day out, night after night providing dedicated care, often at the expense of their own health. There is a tiny minority of people, however—and I am afraid I have met some of them—who are coercive, controlling and manipulative, particularly if there is money at stake. At the moment there is no right of entry even if other relatives or neighbours and friends have raised concerns, and even if clinicians have concerns. Of course in most cases a negotiation can take place and access can be gained, but very often that access is only with a rather controlling person in the room as well, and it can be very difficult to make a full assessment of capacity under those circumstances, as I am sure the Minister is aware. There are people who are at risk. We know that 29 local authorities have identified that there have been vulnerable adults for whom they have been unable to gain access.
New clause 1 is about stating that there needs to be a final backstop in circumstances where it is clear that the safeguarding of a vulnerable adult at risk is paramount. I know there are those who say we already have right of access under the Police and Criminal Evidence Act 1984, but unfortunately the bar is set too high and there is uncertainty about the ability to gain access. New clause 1 sets out very clearly the thresholds, and also the safeguards, because this is not about riding roughshod over individuals who do not wish to have a social worker entering their home. Instead it is about setting out the rights of an individual who may be under the control of a coercive third party. We need to have greater clarity and I hope the Minister will consider this new clause. Having a final backstop works well in Scotland; it is very rarely used but we need to have it in place as a final resort.
NHS Risk Register
Debate between Baroness Keeley and Sarah Wollaston(13 years, 4 months ago)
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Barbara Keeley (Worsley and Eccles South) (Lab)
I support the motion calling on the Government to publish the transition risk register because I think it is vital to ensure informed public and parliamentary debate on the Health and Social Care Bill. As other Members have experienced, 40 of my constituents have written to me about this issue in the last two days. They rightly worry that the Government’s reforms will damage the NHS. They want to see the risk register released to inform them and to let them make up their own minds about the issues. My constituents also believe that Members here and in the other place should have all the available facts and information when debating and voting on legislation.
The proposed top-down reorganisation of the NHS is unnecessary, costly and a threat to our current health and social care services. As we have to consider these costly and unnecessary proposals, we at least need to know the threats and concerns that exist, about which the risk register might inform us.
Risk registers—like other local registers we have heard about—are routinely published by the North West Strategic Health Authority and other regions to communicate risks about the transition to new NHS structures and to ensure that those risks are understood and managed. Let me point out some of the risks mentioned in a recent risk register report for the North West Strategic Health Authority. The transition might mean a loss of grip on current performance or that organisational and system instability during transition could adversely affect corporate performance. Furthermore, corporate and individual capacity and capability might be diminished by uncertainties arising from transition. Those are all rated as high risk.
I believe that we are already starting to see some of those issues arising in the north-west and nationally. The Health Select Committee recently dealt with some of those issues in its report on public expenditure. The Foundation Trust Network had told the Committee that
“in the short to medium term there is significant disruption in relationships as experienced people leave the NHS or are redeployed.”
It also said:
“With the financial pressures on commissioners, combined with the changes in personnel and disruption of historic relationships, there is growing evidence that commissioners are making unsophisticated attempts to reduce costs.”
Based on all the evidence we heard, the Select Committee concluded:
“The reorganisation process continues to complicate the push for efficiency gains…we heard that it more often creates disruption and distraction that hinders the ability of organisations to consider truly effective ways of reforming service delivery and releasing savings.”
I can provide a local example. Salford primary care trust was running an effective service of active case management for people with long-term conditions, but it ended that a few months ago. That is a counter-productive change—the sort of change being made by NHS bodies as they rush to meet the pressures of making savings and reorganisation. I know that ending that service was to the detriment of my constituents and other Salford people living with long-term conditions. I have raised the issue in debates with the Minister of State, Department of Health, the hon. Member for Sutton and Cheam (Paul Burstow), who is in his place on the Front Bench.
The Bill brings competition into the NHS at a level that I believe is unhealthy and unwanted. What are the potential risks to patients of a massive increase in the use of private clinics, private surgery and other private treatments? Much is said about choice, but what about the risks? We know that tens of thousands of women with PIP breast implants are sick with anxiety; they understand the risks of using private surgeons who then refuse to follow their duty of care to their patients. These are women who fear that they might have industrial-grade silicon leaking into their bodies, giving them immune system problems. They are finding that their surgeons are either untraceable or do not want to know about their problems with the implants.
Dr Sarah Wollaston (Totnes) (Con)
Does the hon. Lady accept that GPs will not be commissioning private breast surgery?
Barbara Keeley
In fact, there is a link, or a crossover, with the NHS. I have received letters from women who have had breast cancer and whose breast augmentation has been carried out in the private sector. I think that the hon. Lady attended the Select Committee meeting at which the issue was discussed, so she should understand the risks.
Many private clinics that were keen enough to sell surgery now want to charge their past patients just for a scan to check an implant. Women who have undergone surgery in those clinics have told me that the videos and brochures selling the surgery made no mention of the risks, or even of the fact that implants last only up to 10 years and that they would have to repeat the surgery every 10 years of their lives in order to keep replacing them. That was never mentioned.
Some clinics have gone into administration. My right hon. Friend the Member for Holborn and St Pancras (Frank Dobson) described what happens in such instances. The new owners—if there are new owners—tend not to want to know anything about the problems of past patients. Questions of capacity are involved. The largest private medical company undertaking implants dealt with some 14,000 of the 40,000 patients who were given PIP breast implants, and thus could be seen immediately to be liable for 14,000 removal and replacement operations. However, it now says that it has the capacity to deal with only 4,000 operations of this type per year. Having created a problem, that group of private clinics is now saying that it does not have the capacity to solve it. The Committee was worried about the capacity of the NHS to deal with it, but the capacity of the private clinics who sold all those operations is much smaller.
The problem of PIP implants is on a huge scale, and I still believe that far too little is being done to help the women who are sick with anxiety about their implants. As I have said, the private clinics and surgeons do not want to deal with the problems, cannot deal with them because they do not have the necessary capacity, or deal with them only if the patient pays again, often when she cannot afford to do so. As we have seen, the Secretary of State has no power to compel private clinics or private surgeons to meet what we say are the moral obligations and their duty of care to former patients.
We also, sadly, have a regulator for devices such as implants—the Medicines and Healthcare products Regulatory Agency—which seemed to be incapable of conveying to the 40,000 patients with PIP implants the message that the product was faulty and could be toxic, thus causing 21 months of delay before the patients even knew about the new risk to them. Much surgery, including much private surgery, involves various medical devices and implants, and that situation is not acceptable. Given that we have seen such regulatory failure in the case of one sort of implant, I want to know what risk is posed by private surgery involving other devices. It is possible that in future we will see further scandals involving replacement knees and hips.
We need to know what risks, at national level, are inherent in the proposals in the Health and Social Care Bill, particularly the competition proposals. We need to know that in the House, as the Bill progresses, and we need to know it more widely. I support the motion.