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13 Mar 2008 : Column 127WH—continued
“We are...concerned that the premature or inappropriate discharge of older people could lead to their readmission shortly afterwards.”
I would be interested to know from the Government whether they think that delayed discharges could have the unintended and possibly unavoidable consequence—this may just be something that has to be accepted—of an increase in readmissions, which is not necessarily in the clinical interest of any patient, but particularly not in that of older patients.
The Government point out, and I accept, that when someone is clinically ready for discharge, the last place or one of the last places that they want to be is in an acute hospital. Hospital is then inappropriate, with the risk of infection and so on. There must, however, be a balance between that and over-hasty discharge, with or without the risk of readmission, but certainly where there is the risk of readmission.
As I say, the Government gave a lengthy response to the conclusions and recommendations that they said they would respond to, and we should put on record our gratitude for that, but we did not get a full response on this issue, as the hon. Member for Hendon said. In theory, delayed discharge arrangements should not, as the Government intend that they should not, cause premature discharge where that is not in the patient’s best interests—they may not be ready, or the circumstances may be inappropriate, as, for example, in the case of direct discharge to a care home where there is no interim arrangement. However, the evidence that we took, which was backed by data, rather than by mere assertion, suggested quite strongly that that was happening in practice, and it is what happens in practice, not in theory, that is the problem in human rights terms. Similarly, if everyone was healthy in theory, but a lot of people were not healthy in practice, we would still have the problem of people suffering ill health.
In their response, the Government did not engage with the question whether it is right that the intention is that no one should be discharged directly from hospital to a care home. There is a great deal more to be said in this debate and beyond about to which evidence in our
report the Government take objection. They are entitled to say, “We don’t think this evidence is correct. We think you heard only one side. This conclusion is not valid.” However, given that they restricted themselves to responding to two specific recommendations—they call them 1 and 2 in their response, but both were part of conclusion and recommendation 3 in our report—we did not get the full picture. The Committee may well consider following the issue up in a further evidence session with the Minister so that we have the dialogue that the work of the Committee, the work in the report and the needs of older people merit.
The second issue that I want to touch on is the National Institute for Health and Clinical Excellence. Again, the excellence and completeness of the speech by our Chairman mean that some of these issues have already been raised, but I want to raise a couple of extra ones. Paragraph 192 of our report states:
“In their evidence, NICE note that they have taken advice from their lawyers, and that their procedures are human rights compliant”.
NICE went on to say that human rights were not often cited in appeals. However, that is not what should be required of the human rights culture in public authorities such as NICE. It is a matter not simply of compliance but of recognising that there is a positive duty to consider human rights and to seek to enhance their attainment by the group in question, which, in this case, is particularly vulnerable. That is why, in paragraph 193, the Committee says:
“In particular, we are not convinced that NICE are fully taking human rights into account in their decision-making.”
That sentence appeared in bold, but because we did not use the words “we recommend”, there was no Government response. As a result, we do not know whether the Government agree that the evidence to which we drew attention is a fair reflection of what NICE is doing.
Speaking of the place of human rights in NICE’s social value judgment guidelines, which would seem to be an important place to consider human rights, Age Concern told the Committee:
“it was completely absent from that work.”
To be fair, the Government response to one of our recommendations on the issue confirmed that NICE was revising that guidance and that the issue would now be included. The Government said:
“The National Institute for Health and Clinical Excellence...are currently updating their document Social Value Judgements, which helps those developing NICE guidance in making their decisions. NICE will take this recommendation into account when updating the document, and will be consulting publicly later this year.”
That is useful to know, but that short paragraph is all that we have in response to quite a significant section of our report, which goes from paragraph 191 right to the end of paragraph 199.
My other point about NICE relates to age discrimination, and this may be an indirect consequence of the way in which NICE works. In our report, we said—I am pleased that we did so and I may have argued that we should do so—that we did not take enough evidence on the nature of quality-adjusted life years, which are a significant part of the measure of cost-effectiveness. We did not take enough evidence to judge whether they were appropriate, particularly given the issue of indirect age discrimination. We received conflicting evidence on the issue. NICE told us that a measure of quality-adjusted
life years could often be advantageous to older people. Indeed, one of the strange things about the reluctance of some health care providers to give surgical coronary care, for example, is that there is good evidence that the older people are—within reason and on average—the greater the clinical benefit of intervention. That might seem counterintuitive, but older people often find it difficult to compensate for a physiological problem, and once it is corrected, the improvement in their quality of life is more marked than it would be in that of a younger, fitter person.
A younger person may already have compensated for the problem and will not, therefore, see such a vast improvement in their health as it affects their daily activities, even though the surgical correction is the same in each case. That is why NICE claims that quality-adjusted life years can be advantageous, but if there is a choice to be made about to which patient a rationed treatment such as a kidney transplant should be given, there is an understandable trend to give it—all other things being equal, although they often are not—to the younger person because they have more life years to gain.
I think that that approach is reasonable, but such things should not be done surreptitiously or on the nod. There should be a public debate about the issue, and a decision should be made about whether the good innings argument is a legitimate basis on which to make difficult decisions when a scarce health care resource could help more than one person. That should be made explicit, and there should be a role for Parliament in deciding such things, not simply for a group of people brought together by NICE in a focus group. When it comes to age discrimination, there is a huge amount of sensitivity about such things, which clearly engage with human rights issues.
Parliament has failed to make clear how it wishes such resources to be allocated. I was pleased that the Secretary of State for Health acknowledged that rationing did exist in the health service. He is the first Secretary of State for Health in this Government whom I have known to do that. I think that rationing exists, but the issue is whether it is fair and explicit, not whether we should have a false debate about whether it takes place or not. Older people may well be the victims of unfair rationing and they may, indeed, be unknowing victims, if they do not know that rationing is taking place.
The hon. Member for Hendon also raised the point that some in the medical profession tend to use age as a factor, independent of clinical factors, in deciding what treatments to give. It is not acceptable to say that specialist cardiac care will be given to under-65s, while over-65s will get cardiac care as part of a care-of-the-elderly service. If there is an advantage to having specialist cardiac care, it should be available to everyone who can benefit from that care; it should not be made available simply on the basis of an arbitrary, if understandable, age cut-off. Far too often in the health service, we still see convenient cut-offs based on age, and that may, on one level, be because of sensitivity to the fact that older people need the series of skills provided by a care-of-the-elderly team. If the main problem of an otherwise healthy person who happens to be over 65 is cardiac,
and they do not need the specialist input that a care-of-the-elderly teams can give, they should be seen by the specialist cardiac team, who can seek input from their colleagues in care of the elderly—not the other way round.
Mr. Stephen O'Brien: I am following the hon. Gentleman’s argument, and I see that he is using a clinical evidence base with respect to what is appropriate or inappropriate treatment and attention. Is there behind what he is saying a concern about the funding base for NHS and means-tested social care, and about whether arbitrary age cut-offs could mean that NHS care would not necessarily be provided; or is the hon. Gentleman purely basing his argument on clinical issues?
Dr. Harris: I do not think that that is an argument solely about care of the elderly. Whatever someone’s age, if they need residential care it is likely to be means-tested. We know that there is pressure on the people running the budgets of any publicly funded service for which 100 per cent. of the funding is provided by the state to move people into means-tested care. I know that the hon. Member for Eddisbury (Mr. O'Brien) has an interest in that dilemma. The situation is inevitable, when in many contexts there is a boundary between NHS and means-tested social care; it occurs more often in the context of care of the elderly, but I was not making exactly that point.
Finally, I want to mention population screening. The Committee heard from Age Concern, which has been pretty consistent about the matter. Its view was that an upper age limit for screening programmes was discrimination on the grounds of age. I argued against that necessarily being so: when consideration is given to the question of which populations should be brought in for population screening, it is possible to analyse cost-effectiveness. That captures a great many aspects of the matter, such as the sensitivity and specificity of the test, its acceptability, and the effectiveness of treatment for those who are found to be true positives. A calculation can be done of the overall cost-effectiveness by population, according to age—or, indeed, according to other factors, although age is commonly used.
There are some age groups in which it is simply not cost-effective to screen. It would be wrong to take resources from effective and cost-effective treatments, to provide a screening programme that might sound good and be popular, but would not be cost-effective. I think we must accept that, which is why I disagreed with Age Concern’s view that an age cut-off for calling in people to be screened is always inappropriate, and why I intervened on that point in the speech of the hon. Member for Hendon. That is not to say that if someone wants breast screening, for example, but is over the age at which people are called in for it, they should not have access to it on request. That is permitted in the NHS and I make no criticism—nor, I think, does the report—of Government screening programmes, at least on those grounds. It is not gender discrimination to provide breast screening only for women; it is a question of effectiveness, and cost-effectiveness, in the end.
In conclusion, I want to comment on the meaning of the term “public authority”. The hon. Member for Hendon hid his light under a bushel, to some extent, in his speech. The Joint Committee on Human Rights has
an interest of long standing in the question of the failure—in practice and on the part of the courts—to understand the meaning of “public authority” as including those private companies and organisations that provide a public function, particularly with respect to health care. The hon. Member for Hendon has a long history of effective campaigning, as a Back-Bench MP and as Chairman of the Committee, to push the Government to move more quickly than they have towards a resolution of the problem—even after the Leonard Cheshire case, and before the YL case.
I think there is a huge expectation in society, within NGOs and in the House, that there will be effective provision—even if it is not the whole story, for reasons that we understand—by the Government in the House of Lords. I know that the Minister will want to reassure us that that is so, because I know that he and his colleagues, including the Minister of State, Ministry of Justice, the hon. Member for North Swindon (Mr. Wills), have been lobbied about the matter. They have heard the arguments and have had a series of meetings with hon. Members and outside groups, so they are not blind to the issues. We hope that progress will be made now, with the Bill that is currently going through Parliament, even if a wider solution is needed in later legislation.
I add my thanks to those offered by the hon. Member for Hendon to the people who supported the Committee in its work, those who gave evidence, those who helped us with the report and our specialist advisers. It is an excellent report, and I join the hon. Gentleman in commending it.
3.25 pm
Greg Mulholland (Leeds, North-West) (LD): I want to say how pleased I am to be contributing to the debate. I commend the Joint Committee’s excellent report, and the work of the hon. Member for Hendon (Mr. Dismore) and his Committee. The report could not have come at a better time to move the debate forward. We would probably all agree that things have not been moving as quickly as we should have liked. To quote Help the Aged, which also welcomed the report:
“Sadly, we have seen little progress in this area since we published Rights at Risk in 2005 and think that it is now long overdue.”
As the Joint Committee’s report made clear, there is much excellent health and social care provision for older people throughout the country. It is very heartening when we see at first hand the best of our health and social care professionals giving such care, and ensuring the dignity and human rights of older people—something to which we are all committed. Unfortunately, as we have already heard powerfully expressed by the hon. Member for Hendon, examples of neglect and abuse of older people are simply too widespread. We probably all accept that we are talking about a societal problem, and not simply a political one. Some people’s attitude to older people is a manifestation of a view of them as second-class citizens who somehow do not have the same human rights that other people do. All the cases that we have heard about from the hon. Gentleman suggest that such attitudes are found far too frequently.
I was very happy, as I think the hon. Gentleman knows, to put my name to amendments to the Health and Social Care Bill that tackled the current loophole in the Human Rights Act 1998, affecting private and
voluntary care home residents who are not state funded. I shall talk about that more later, but will mention now that there are 300,000 vulnerable older people who are not protected by the Human Rights Act. There have been discussions with the Minister of State, Department of Health, the hon. Member for Exeter (Mr. Bradshaw), and I welcome the fact that they are continuing.
We still, however, hear of cases of malnutrition and dehydration, rough handling of patients, bullying, neglect and people being left in their own urine and excrement. The British Institute of Human Rights provided a list of examples, including continent older people being forced to wear incontinence pads; the bathing of older people one after the other in the same bath; routine over-medication to keep people docile; night staff forcing older people to wake at 4 o’clock in the morning to be cleaned and dressed, simply because that suits the shift pattern; and an older woman being placed on a commode, fed Weetabix and washed by a carer, all at the same time. The issue that was so well highlighted by the Joint Committee’s report is that, at the moment, there is no real recourse to a legal remedy under the Human Rights Act. Until that changes, older people and, of course, younger disabled people are unable to challenge clear violations of their human rights by independent providers of health and social care.
The report was neatly summarised by the hon. Member for Hendon. He mentioned some of the key issues, the first being hospital discharge. Again, inhumane discharge procedures often happen simply because of a lack of consultation with families or a lack of information to the individual and their family. There is very little information about options—frankly, a lot of the time, there is no choice at all. Often, such things happen in the context of bed-blocking, which is a difficult situation, and the need to move patients into appropriate care facilities from hospitals. However, despite the inevitable pressures, we must ensure that older people have rights. That needs to be addressed, and patients’ rights need to be clearly spelled out, which I hope we will hear from the Minister.
I am sure that we agree that confidentiality causes problems. It is vital that the Department of Health issues clear guidance and perhaps a code of practice to make clear the limitations to the duty of confidentiality so that, when appropriate, family members or carers receive information and are involved in decisions, as they clearly need to be in some cases.
On the right to complain, there are huge barriers in the system as it currently operates. The hon. Member for Hendon gave a powerful, specific example of someone who was evicted for complaining. So many people in our care homes fear that. People within the NHS often have limited awareness of the organisation’s complaints system, or they have difficulties navigating it. That strongly makes the case for an independent advisory service for people, their families and carers to enable them to navigate their way through the system and to show them where to go when they have a grievance and wish to make a complaint. There should be an independent complaints system in social care settings to ensure that people have the right to speak up.
Returning to the human rights loophole, we had lengthy discussions on the matter in debates on the Health and Social Care Bill. Because 90 per cent. of care homes are in the private or voluntary sector, the
issue can no longer be ignored if we are serious about tackling the problems that we have heard about today. I was pleased to take forward amendments on the back of the Joint Committee’s report, and to work with the hon. Member for Luton, North (Kelvin Hopkins), who led on those matters in the Health and Social Care Bill Committee.
I welcome the way in which the Minister of State, Department of Health, the hon. Member for Exeter, listened and engaged with organisations and MPs across the political spectrum to take the matter forward, but the fundamental issue remains. Until we close the human rights loophole—some of us strongly believe that that must be done in the Health and Social Care Bill—we will continue to experience situations in which two residents in the same care home have different rights or, indeed, one will have rights under the Human Rights Act but the other will not, simply because one has assets of more than £21,500 and the other does not. That cannot be right.
I was happy to discuss the matter at the Department of Health, and to acknowledge the challenges of the way in which the Human Rights Act is currently framed. However, it cannot be right that one person is covered and another is not, even though they receive the same care in the same institution. We all accept that principle but the challenge is to legislate for it. The Government said consistently in Committee that they did not believe that the Health and Social Care Bill was the right measure to tackle the issue, and they talked about doing so later on in a Bill of Rights.
The Parliamentary Under-Secretary of State for Health (Mr. Ivan Lewis): Will the hon. Gentleman give way?
Greg Mulholland: How could I possibly say no?
Mr. Lewis: May I seek clarification on the hon. Gentleman’s comment on differential rights in the same establishment? As I understand it, the problem that we are all keen to sort out is that publicly funded individuals in a private establishment ought to be covered by the Human Rights Act, but are not. On Parliament’s and the Government’s intentions, self-funders were never going to be covered by the Human Rights Act, which leads us to a debate on how to protect them. However, as I understand it, the problem is not that there is one group of people in a home who are protected while others are not; it is about public commissioning in private homes. Parliament and Government intended that those who were publicly funded should be covered by the Act even if they live in a private home, so we do not have an apartheid system in any single establishment. It is simply that a group of people who we thought ought to be covered are not covered at the moment.
Ann Winterton (in the Chair): Before Mr. Mulholland gets to his feet again, it would be helpful if hon. Members—I have been lenient—made shorter interventions.
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