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Baroness Finlay of Llandaff: I shall speak to Amendment No. 18 and in support of the other amendments in this group. There is a fundamental principle involved here; namely, consent. We require consent from patients for everything that we do to them: whether we take blood, or operate, or whatever else we do, consent is required. The carers must be considered in the role of secondary patients. They are taking on a burden and they need to know what is involved.
There are three fundamental principles for consent to be valid: first, it must be informed; secondly, the person must be competent to make the decision; and, thirdly, the consent must be voluntary. I have real concerns that, without consent being explicitly spelt out on the face of the Bill, we shall be seriously impinging on patients' rights.
Patients must be informed of the benefits as against the risks and burdens of every decision that they take. That includes knowing the time, order of events and, as the noble Earl, Lord Howe, outlined, the costs that may be incurred. But competence involves the ability to understand the information that is given, weigh it up and communicate choice. I have a concern that patients are extremely vulnerable and that there is a power differential of professionals over patients and their carers. This is never more evident than with those who have chronic disease, who know that they will inevitably be returning to the service and are fearful of incurring the displeasure of those professionals who are involved in their care.
Finally, there is the principle that consent must be voluntary. It must be free of coercion. I am concerned that several things, which we have heard about, make a decision free of coercion extremely difficult.
Language is crucial to the way in which this is communicated—the frame within which issues are to be considered. The language means that realistic risk is included within this frame of decision-making and irrational fears are discarded.Patients can feel that they are a burden. Some relatives do not want to care and some are fearful of caring. Carers often feel unable to undertake intimate care such as bladder and bowel care. They are fearful of helping someone move to get to the toilet and fearful of what to do if the patient vomits or does not take their tablets. So often, problems arise at home when the district nurse or other professional carers who visit the house have just left. Carers need educating, and this takes time. I have a concern that current hospital policy may mitigate against some of the education that is needed.
What alarms me the most, however, is the concern expressed by the noble Baroness, Lady Barker, when she spoke to Amendment No. 8. There is a real fear that if patients do not accept the care package on offer, they will effectively be told to like it or lump it. That may be the message they get; it would result in true coercion and would mean that any consent was invalid anyway. This raises huge ethical issues about the whole process of the discharge if patients do not have free choice and if it is not fully informed. How can choice be deemed to have occurred and how can consent be valid if the patient has only one option or feels under enormous pressure, for whatever reason, to comply with what is being offered?
The Lord Bishop of Hereford: I agree that Clause 3(3) is impossibly bald and has led to the widespread feeling that patients are treated in the Bill as commodities. Something must be done about it. The principle of consent is absolutely right, but I am under no illusion that it is always given. Acute dilemmas may arise in which there is little room for manoeuvre and little choice. I am mindful of a recent incident where a patient was ready to be discharged from acute care and needed intermediate care. An intermediate care bed was available in a community hospital but it was an inconvenient distance from where the patient's family lived. The patient's family was told that there really was no alternative—the patient needed to leave acute care and go to the intermediate care bed. The family camped out around the patient's bed physically to prevent the movement of the patient to the intermediate care bed.
There are very serious dilemmas, and I recognise that choice is sometimes not available because there are so few beds. Beds are blocked in not only acute hospitals but intermediate care community hospitals and other places.
Recognising the great difficulties that exist, I still believe that some form of consent needs to be on the face of the Bill, otherwise it will be entirely unacceptable. I recognise that it is not simple and that acute difficulties sometimes have to be negotiated with skills that people might better deploy in the Security Council. Real skill is needed to negotiate the way through these dilemmas. It is a real problem; if the Minister says that we cannot offer
choice because sometimes there is none, I think we will have to agree that sometimes that is the case. What then comes into play is the skill of the person who has to negotiate with the family and the carers. That takes a high degree of skill, patience and flexibility, and there may be a slight delay until a better solution becomes available. But I believe that, in principle, consent must be written into the Bill, or Clause 3(3) will be regarded as entirely unacceptable.7.15 p.m.
Baroness Pitkeathley: The Government have a very proud record of putting patients and their carers at the centre of NHS policy. I want to speak in particular to the amendments concerning carers. Members of the Committee will know that I yield to no one in wanting to see carers in not only every bit of every Bill but in every sentence of every Bill, but I recognise that we have to keep a sense of proportion about this. The Government have made major concessions in another place regarding the recognition of carers, and on the statute book there are already Acts of Parliament concerning carers, such as the Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000, with which I had something to do. So there is already a great deal of protection for carers.
There is no doubt that the active engagement of patients and their carers is central to discharge planning. In a recent survey, Carers UK found that 43 per cent of carers felt that they were not given adequate support at the time of the discharge. However, I would query whether these amendments are the way to deal with that. We have to ensure two things: first, that the people concerned with discharge make sure that the carers are central in all their discussions; secondly, that the carers are empowered in that discussion to state their needs. Their needs are already catered for—we have to help them express them.
Baroness Masham of Ilton: I, too, strongly support the amendments. A patient should be a person, not just a number. When pressure is on, good standards should be written on the face of the Bill. Some elderly people have a real fear of the social services. Maybe it is to do with pride, but it is also to do with independence. The patient should come first. The old hospital almoner was a well trusted person. The noble Baroness, Lady Pitkeathley, will not agree with me, but I know many elderly people who just do not want to communicate with the social services.
Baroness Andrews: This has been a short but powerful debate in defence of the patient. We yield to no one in our concern for the patient. We would be extremely dismayed if we thought that the notion of the patient as a commodity was implied in the Bill. Nothing could be further from the truth. The whole purpose of the Bill is to establish the rights of patients and the focus on patients so that they get the very best, the most appropriate and the speediest care without sacrificing quality or choice in the process. I believe that we would all agree with that, and I am grateful for what the noble Baroness, Lady Pitkeathley, said.
Let me deal first with Amendments Nos. 16, 24 and 96 and go straight to the code of practice. I hope that I can put the mind of the noble Lord, Lord Clement-Jones, at rest about the code of practice. Let us consider the notice that will be required to be put into operation. It is envisaged that the notice needs only contain the patient's name and location, the name of the NHS contact, the date of admission—if that has not yet occurred—and the likely date of discharge. It does not require or authorise the inclusion of any sensitive details of the patient's medical condition or the transfer of any more information than is currently the case. That is in the regulations, and I hope that it indicates that we are concerned about patient confidentiality and involvement. However, we believe that because the notice is only an administrative device for good record-keeping, there is an argument for not having the patient involved at that stage.
I am pleased to say that we are putting increasing emphasis on patient involvement. We have moved on from the old paternalistic system, in which everything was good for the patient and they never had a say. As the noble Baroness, Lady Pitkeathley, said, we have changed, by recognising and amplifying the voice of the patient. I hope that reassurance deals with Amendment No. 16.
The second part of the amendment would require patient advocates to be appointed in cases of mental incapacity. There will be instances in which patients are unable to express a preference for themselves. There is a long-standing common law principle that public bodies should act in the best interests of people whose capacity to consent or to understand the reasons for a particular treatment has diminished. It would be entirely reasonable to expect the NHS and councils to act on the preferences expressed by the carer, just as the noble Baroness, Lady Pitkeathley, suggested, unless, exceptionally, they felt that that was against the interests of the patient.
Amendment No. 24 raises a similar issue. However, there is a misunderstanding here. The notice formalises what already happens across the country, but it is not issued to the patient. We expect the NHS to discuss with the patient the situation surrounding their stay in hospital before they are admitted. If the patient lacks capacity, the NHS has a duty to act in the patient's best interests. The notice does not involve the patient and it is not necessary for the NHS to explain it. There is not a great deal to explain.
I confess that I find the new clause to be inserted by Amendment No. 96 a bit confusing. It seems to suggest that patients will need the protection of an independent advocate to prevent a proposed discharge. In perhaps the majority of instances, having seen that the patient is recovering fully the consultant will decide to discharge the patient with no need for further assessment. That would be the case with, for example, a fit and healthy person with a broken leg. The safety risks are very low. We have to ask whether we want to require the NHS to offer independent advocates to every person who is well able to look after themselves on leaving hospital. That could be an unintended effect of the amendment.
Of course, any assessment must meet the requirements of people who need support. As I have said, that would be governed under Section 47 of the 1990 Act. I hope that the Committee will commend the fact that, through setting up the patient advocacy and liaison services, we are making a much more robust and clearer opportunity for patients, their carers and their families to be involved generally. They can, when appropriate, refer to independent or specialist advocacy services.
My noble friend Lord Hunt of Kings Heath dealt with the question asked by the noble Baroness, Lady Finlay, about self-funders. He said that some patients may decide that they do not want to be assessed by social services. They have that choice. No one is under an obligation to accept assistance from social services. However, the local authority must make all reasonable efforts to make sure that they have a choice. It is not a question of either agreeing with what the local authority says or being shoved out and having to become a self-funder. It will not work like that. Only if the patient continues unreasonably to object to the services that are offered despite attempts to make a compromise will they have to be regarded as having discharged themselves. We all take very seriously everything that the noble Baroness says, given her long and current experience. I hope that clarification helps her.
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