Care Bill [Lords]
Debate between Barbara Keeley and Sarah Newton(10 years, 1 month ago)
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Barbara Keeley
I would like to think so, but I am not going to hold my breath. I think I am a lot more pessimistic than the hon. Lady. Indeed, we know that some GPs have been so alarmed that they want to opt their patients out of the scheme. They should be able to do that without penalty. It is up to Ministers, NHS England and HSCIC to rebuild that confidence, but they are not doing so at the moment. They seem to see what is going wrong as a communication or public relations problem. It is not a communication or PR problem; it is a very serious problem with regard to the integrity of what they are doing, and a lack of transparency and accountability. We cannot say that enough times.
Sarah Newton (Truro and Falmouth) (Con)
I have worked alongside the hon. Lady to try to improve our social care system, so does she not agree that it is important that we work on this issue so that GPs are confident about sharing data? Otherwise, how will we enable the integration of social care with the NHS in the community to give people the sort of care that I know that she and I, through all our work together in Parliament, want to see?
Barbara Keeley
Yes, indeed, but I cannot emphasise enough that I do not feel much confidence at the moment and I do not blame GPs for not being confident. They are, in data protection terms, the owners of their patient data. If they do not feel that their concerns have been allayed, we have some way to go. I will touch on that point in a moment.
There are fundamental concerns on how data will be shared and the Government’s amendments do not address them. The amendments would improve Government new clause 34, but broadly it offers no further protection. It seems that data could still be released to commercial bodies, such as private health care companies that are also health insurers, the pharmaceutical industry and private health care providers. We need assurances on that. As far as I can see in this debate, we have not had them.
The Government’s new clause will actually widen the dissemination of information to include the promotion of health. Promotion of health can take in all kinds of commercial companies, for example food and drink companies that say they have a public health campaign. This will cause more problems. It draws the purposes so widely that misuses would still be permitted, and even be given a statutory basis. The requirement that the HSCIC must have regard to the advice of the confidentiality advisory group is still an inadequate protection.
I have added my name to amendments (a) and (b), tabled by the hon. Member for Totnes, because they would narrow the purposes for which data can be disseminated. However, I remain concerned about the commercial exploitation of patient data. I support new clause 25, which highlights the seriousness of the offence of misusing patient data. We need a clear disincentive for institutional abuse of confidential patient data with appropriate penalties including, as the hon. Lady said, imprisonment. Imprisonment is appropriate for the abuse of confidential patient data.
Sarah Newton
The hon. Gentleman has given yet another reason for the importance of collecting and sharing data in a way that helps to improve health outcomes. A further example is an inquiry into medical implants that was conducted by the Science and Technology Committee. Orthopaedic surgeons were able to keep a great many data relating to the types of implants used in, for instance, hip replacements, and to track, over time, the outcomes for the patients. As a result of that research, they were able to identify particularly problematic implants, and the information was shared among clinicians so that they could improve existing implants and develop new ones. Hip replacements have improved greatly as a result. It is vital that we establish frameworks that give confidence to patients and to medical practitioners, so that such information can be collected and used to improve patient outcomes.
Barbara Keeley
The hon. Lady clearly supports such uses of the databases, but, as I said earlier, there is concern about the fact that this is going global. There are memorandums of understanding between countries, and the granting of access to one organisation seems to lead to its being granted to others. The whole thing could easily spiral out of control. Does the hon. Lady share that concern? I do not know whether her inquiry established any way of describing the system that would enable people to understand it and have confidence in it.
Sarah Newton
In many of our inquiries, we have looked into international collaborations between universities that are tackling some of the greatest challenges of our time. One example is research into various forms of dementia, and proteins in the brain that contribute not only to vascular dementia, but even to vCJD. We have concluded that in order to meet the huge challenges that those diseases pose to the whole world, we need to pool our resources across universities and research communities internationally. There is an increasing number of well-established protocols and sensible ways of reassuring patients and others about the use of their data. Such international collaboration makes it more likely that we can make discoveries that will drive improvements in people’s outcomes.
Frameworks and safeguards exist to enable universities and academics to collaborate. We should be careful about the language that we use in this context, because there has been scaremongering, and people are identifying all sorts of potential uses for the data for which there is not much evidence. We have been reassured several times today that the information would not fall into the hands of insurance companies and be used in a harmful way.
NHS Care of Older People
Debate between Barbara Keeley and Sarah Newton(12 years, 6 months ago)
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Barbara Keeley (Worsley and Eccles South) (Lab)
It is a pleasure to speak in the debate when you, Mr Betts, are in the Chair.
The full title of our debate is “NHS Care of Older People”, and the fact that that distinction is made shows that there is an issue in the care of older people by the NHS that needs to be discussed. It is right, therefore, that we are debating this matter today and I congratulate the hon. Member for Stourbridge (Margot James) on securing this debate and on the way in which she opened it.
A number of reports made to Parliament this year on the failings of NHS care of older people have shocked us. The health service ombudsman, Ann Abraham, reported in February on a
“picture of NHS provision that is failing to respond to the needs of older people with care and compassion, and to provide even the most basic standards of care”.
Her report told the stories of 10 people over 65—partners, parents and grandparents: individuals who put up with difficult circumstances and did not like to make a fuss, compared with those who, as we have heard, were difficult—who wanted to be cared for properly and, at the end of their lives, to die peacefully and with dignity. Ann Abraham tells us that what the people involved have in common is their experience of unnecessary pain, indignity and distress while in the care of the NHS.
The second of the 10 stories is that of Mr D, and it particularly focuses on the last five days of his life. He was admitted four weeks earlier with a suspected heart attack but after tests was diagnosed with advanced stomach cancer. He was to be discharged from hospital on the Tuesday after the August bank holiday weekend, but it was brought forward to the Saturday. The summary of the story in the report is harrowing. The discharge of, we must remember, a man with only a few days to live was a shambles. The report goes on:
“On the day of discharge…the family arrived to find Mr D in a distressed condition behind drawn curtains in a chair. He had been waiting for several hours to go home. He was in pain, desperate to go to the toilet and unable to ask for help because he was so dehydrated he could not speak properly or swallow. His daughter told us that ‘his tongue was like a piece of dried leather’. The emergency button had been placed beyond his reach. His drip had been removed and the bag of fluid had fallen and had leaked all over the floor making his feet wet. When the family asked for help to put Mr D on the commode he had ‘squealed…’ with pain. An ambulance booked to take him home in the morning had not arrived and at 2.30 pm the family decided to take him home in their car. This was achieved with great difficulty and discomfort for Mr D.
On arriving home, his family found that Mr D had not been given enough painkillers for the bank holiday weekend. He had been given two bottles of Oramorph (morphine in an oral solution), insufficient for three days, and not suitable as by this time he was unable to swallow. Consequently, the family spent much of the weekend driving round trying to get prescription forms signed, and permission for District Nurses to administer morphine in injectable form. Mr D died, three days after he was discharged, on the following Tuesday. His daughter described her extreme distress and the stress of trying to get his medication, fearing that he might die before she returned home. She also lost time she had hoped to spend with him over those last few days.”
The summary of this case sounds terrible, but the detail was much worse. The family were my constituents and I supported the family’s complaint after meeting Mr D’s daughter. Every aspect of this case showed the NHS in a very negative light.
Let me give a summary of the detail in Mr D’s case, as reported to the ombudsman. Mr D was not helped to use a commode and fainted, soiling himself in the process. He was not properly cleaned and his clothes were not changed until the family requested that the following day. The ward was dirty, including a squashed insect on the wall throughout his stay and nail clippings under the bed. He was left without access to drinking water or a clean glass. His pain was not controlled and medication was delayed, sometimes by up to one and a half hours. Pressure sores were allowed to develop. No check was made on his nutrition. His medical condition—the fact that his illness was terminal and that he had only a few days left—was never properly explained to his family. He was told of his diagnosis on an open ward, overheard by other patients.
I spoke about this case in a debate about the NHS Redress Bill, and I agree with the comments that the hon. Member for Stourbridge made about accountability. Where was the accountability in this hospital? Where was the ward manager or matron figure who was letting these things happen?
At this point, Mr D’s daughter, a constituent, came to me for help. She desperately needed an answer and an explanation of what had happened. As her MP, I felt the hospital needed to admit its errors and take measures to ensure that what happened to that patient did not happen to anyone else. Regrettably, in the months that followed, the hospital seemed unable to do that. In fact, the dreadful failures in care and communication were made worse by the inadequate way the hospital dealt with my constituent’s complaints, as I reported to the House in that earlier debate.
After raising her complaint with the hospital, my constituent found that responses from it were not sent in keeping with agreed time scales and often took three or four weeks longer than it had promised. Copies of responses from the hospital were never sent to me, and I had to chase every single one of those responses, which were often inadequate. That was the worst thing for this bereaved family, because the delayed answers and prevarication from those investigating the complaints left the family feeling more angry and upset. Their anger was originally due to what they perceived as delays in diagnosing Mr D’s terminal condition and the poor treatment and care he received, but the whole thing became worse because of the way the case was handled.
The complaints the ombudsman’s report details are very serious, and I am talking about just one. In making their complaint, the family know that nothing can bring back their loved one—their father—or change the way he was treated, and families often tell us that. However, the family desperately want explanations and an apology, and they desperately want to ensure that no other parent is treated the same way.
Sarah Newton (Truro and Falmouth) (Con)
The hon. Lady is making an incredibly moving speech. I pay great homage to the work Ann Abraham has done in her role as ombudsman, and yet another fantastic report came out last week about the complaints procedure. Does the hon. Lady agree with the recommendation in that report that there should be far greater partnership working with organisations such as the Care Quality Commission? Does she agree that the Government could take steps in response to the findings of the consultation they have just held on the information revolution? Such measures would really help improve the complaints procedure, which would drive up standards of care.
Barbara Keeley
Yes, indeed. We discussed those issues in relation to the NHS Redress Bill. The difficulty we have with the most extreme cases, as I am describing in relation to my constituent, is that the medical establishment seems to close up when facing such complaints, and people become fearful that they will be sued and have problems in their careers. We must remove that way of handling such awful cases, because it is just not acceptable.
Like every MP, I understand that the Government cannot manage every consultant and every ward to make sure such things do not happen. However, they do happen, and there are many more cases than the 10 the ombudsman reports on. We must bring about a change of culture to allow for an acknowledgement of the fact that there must be better redress than there was in this case when a whole system of care and treatment fails a patient and his family, and when standards of professional practice and communication fall. The MP and the family should not have to battle the complaints system and eventually take their case to the ombudsman because only the ombudsman can ever make a hospital do what it should have done in the first place.
The family were looking for an acknowledgement, an explanation and an apology, and they wanted to make sure that these things did not happen again. It is very reasonable that they should expect that.
Sarah Newton
The hon. Lady is making an incredibly important point about how complaints are handled in the NHS. In highly effective organisations, complaints are considered to be gold dust, because they are part of how those organisations drive up standards and improve services. That benefits not only the patients, but staff. It is so demotivating if staff working on poorly managed wards, or in the NHS more generally, raise complaints, even through protected disclosures, and nothing happens. That can cause them stress and great personal harm.
Barbara Keeley
Indeed. I do not distance myself in any way from the excellent point the hon. Member for Stourbridge made in opening the debate: this is about leadership, management, training and accountability, all of which failed in the case I have outlined.