Joint Committee On Human Rights Minutes of Evidence


Examination of Witnesses (Questions 373-379)

MR IVAN LEWIS MP, MR DAVID BEHAN, AND MR SURINDER SHARMA

4 JUNE 2007

  Q373 Chairman: Good afternoon, everybody. This is the last of our evidence sessions in our inquiry into the human rights of older people in the healthcare system. We are joined by Ivan Lewis, who is the Parliamentary Under Secretary of State for Care Services, David Behan, Director General of Social Care and Surinder Sharma, National Director for Equality and Human Rights at the Department of Health, so welcome to you. Do you want to make any opening remarks, Ivan?

  Mr Lewis: Very briefly, if I may. First of all, Chairman, can I thank you very much for giving us the opportunity of appearing before you, though I know it is not an entirely voluntary or charitable act on our part, but we are delighted to have the opportunity of giving evidence. We do believe that this is a really important issue. We believe it will become increasingly important as the demographics in society change. We are being asked new questions every day in terms of older people living longer but also developing more and more challenging conditions like dementia and Alzheimer's, which I think raises in a sense a different dimension to this debate. We believe that we are only at the beginning of a journey in terms of looking at NHS care and social care from a human rights point of view generally, but that the older persons' specific component part of this will become, I think, the growing issue not only for government but also for society. We are quite pleased with some of the progress we have made. We believe that the NSF, the National Service Framework for Older People, can demonstrably be shown to have led to progress. Since that was introduced there has been a real change of culture in many parts of the system up and down the country. We have Human Rights and Healthcare—A Framework for Local Action, which the Department published not that long ago and I think members of the Committee may be aware that I have been leading, I suppose politically, a focus on the centrality of dignity and respect of older people in a variety of care settings, again both NHS and social care, trying to recognise that in a world where we quite rightly focus on targets and outcomes it is equally important that we focus on each individual and their personal needs and their right to be treated with respect and dignity, and that just because somebody reaches a particular stage in their life or develops a particular condition that does not mean that somehow we diminish their human rights or their right to equality of citizenship. We think we have made some progress in recent times. However, we acknowledge that there is a long way to go. Performance is still patchy. I think if you spoke to the average NHS or social care professional and asked them about the implications of human rights legislation they probably would be able to articulate the way they work with people and that many of the principles that underpin the way they work with people are sound, but I doubt many of them would link or relate that specifically to the consequences of the legislation and the change of culture, so I think we still have some way to go in terms of making the legislation relevant to the way, on a day-to-day basis, leaders, managers, commissioners and front-line professionals, as well as those who use services and their families, relate the Human Rights Act to their daily experiences.

  Q374  Chairman: So what would your understanding be of the importance of human rights principles to the provision of health services?

  Mr Lewis: I think it is absolutely central to the message we are trying to send out in terms of a new approach to the way social care works with users, whether those users are older people or disabled people, and the way the NHS treats patients, with great emphasis on fairness, respect, equality, dignity and autonomy for all. With regard to the human rights legislation and the direction of travel in terms of reform or modernisation, or whatever particular words you want me to use in terms of public services, I think there is a direct synergy between the two. Unfortunately, I doubt, as I said at the beginning, that many people make the link.

  Q375  Chairman: That is one of the things that we have picked up during the inquiry and we will be asking some more questions about that later on, but the key issue is, are people working the way they are working because they see it as the right of the patient that they do things properly or because it is their job, and the two are not necessarily the same? I would particularly like to raise an issue in relation to older people, which is that older people often have multiple chronic illnesses and the NHS seems to be more focused on trying to cure people then care for people who may not be capable of being cured. I think part of the problem therefore is, do you see the human rights principles as a lever to try and redress that difference between caring for people and curing them and to try and boost the caring side of the way the NHS works?

  Mr Lewis: One of the difficulties we have had over a long period of time is definition, ie, people who are entitled to existing NHS care, which is free at the point of need irrespective of ability to pay funded by general taxation, and those people we define as needing social care. There is often a very thin line between entitlement to those different responses from the state. There are a number of things we can do. For a start, we have to clarify once and for all who is entitled to continuing care and the responsibility of primary care trusts to ensure that people who are entitled by law to continuing care receive that care rather than, has been the case too often, that somehow people have been defined as having a social care need but in fact they have a healthcare need. We are due to issue national guidance at the end of June which hopefully will make that system far more transparent in terms of people's rights. We did introduce some time ago Fair Access to Care Services, which again attempted at a national level to create far more transparency about the criteria used to determine people's eligibility for services. However, there is no doubt that we have begun to destroy the Berlin Wall, if you like, between the NHS and social care, or increasingly between the NHS and local government by the adult social care department of the local authority these days, in terms of the health and wellbeing of the local population, but we have not yet destroyed it so we still have some way to go.

  Q376  Chairman: Is part of the issue the need for more intermediate care beds, like we saw at Edgware Hospital, where you have got people who are too sick to be in residential care but do not necessarily require the full services of an acute hospital?

  Mr Lewis: I think that is called a leading question. The only answer, Chairman, is yes. It plays into a much larger debate about how we as politicians, managers at local level and communities are going to face up to the real challenges that we now face in terms of demographics but also changing public expectations. This whole rights agenda needs to link into what people want. It seems to me that my generation, and I will be careful what I say, will not want other than very much last resort institutionalisation, so basically people understand that when you are seriously ill you need to be in hospital but beyond that in most circumstances people will want care within their own home. This will be their want as well as their right and it is not just some ideological, philosophical driver. If you accept that at every stage of the care you are offering to people you have to have balanced provision serving every local population, from the kinds of services that are early intervention and prevention, usually about going into people's homes or supporting people to live as independently as possible, to intermediate care, to primary healthcare, and also that there will always be a need, obviously, for high quality, specialist acute provision, it is making sure as we go forward that in every community there is an appropriate continuum of care so that people get the treatment where and when they need it. We know this is difficult because no government is going to be able to continue simply to spend more and more resources. Part of this has to be about the courage to shift and redirect resources where they are tied up currently in frankly inappropriate provision in order to ensure that there is the full continuum of provision available in local communities.

  Q377  Earl of Onslow: Minister, your definition of the problem of the elderly was absolutely clear and I think there is hardly anybody who would disagree with it, but you did not address it; you just said, "This is what the aim should be", with which I completely agree. It seems to me, and my colleagues on this Committee know this is a bit of a hobbyhorse of mine, that this has nothing to do with the Human Rights Act. It is how it ought to be done anyway. How would you ideally have treated people before the Human Rights Act was in existence? Would it be the same way as after the Human Rights Act was in existence?

  Mr Lewis: Best practice means that we would reorganise and reconfigure and reform public services in the way that we are seeking to do, which is to give more power and control to those who are patients or users of services and their family members and carers than has been the case historically in terms of the relationship between professionals and organisations and those who use the services. Does that in reality in many cases require underpinning by legislation based on rights? My argument I think would be yes, that if you simply exhorted and talked of best practice without legislative underpinning then inevitably public bodies would find ways not to completely implement their obligations, so an element of legislation is, I think, really important. Do we need to legislate to secure every objective and every outcome? No, we most definitely do not. Do I think having an element of this enshrined in law helps? It does.

  Q378  Earl of Onslow: It only helps to do it to the standard which you and I would both think is the right standard. It is a lever, something that makes people do it.

  Mr Lewis: Can I try and help? If I am a leader or a manager in a health organisation or a local authority social services department, when I go into work every day the minimal requirement of me is to make sure I fulfil my statutory or legal obligations. That is my first priority essentially. Then we go on to best practice, excellence, the way we organise services. Essentially it does make a difference to the prioritisation, the decisions, the way that people who run public services, either as employees or, in local authority terms, elected members, fulfil their responsibilities. Do I believe that the way to secure best practice is always through legislation? Most definitely I do not.

  Chairman: The real issue is how we get away from the tick-box compliance to mainstreaming it and those are the things we will be exploring.

  Q379  Nia Griffith: Minister, perhaps you could tell us a little bit about the concerns that you yourself can identify in the treatment of older people in hospitals and care homes. What would you say are the human rights implications of those particular concerns and problems?

  Mr Lewis: Unfortunately, I have tried through the dignity and respect campaign to be very honest and straight about some of the issues that older people and their families tell us about themselves. The problem with that is that when we talk sometimes about the way that nutrition is organised in hospitals we end up with the Daily Mail saying thousands of people are being starved in this country. They are not, but are we satisfied with the way that nutrition and people's access to food is dealt with in hospitals and care homes? Often we are not. When I raise the question of the fact that older people have said (I have not said it), "We do not like presumptions about the way we want to be addressed, the fact that we may be called by our first name when we would rather be called more formally", (or the other way round; some people much prefer the more informal approach and are quite happy with the jocular way of being addressed), that is kind of trivialised by the media and people say, "Is that the biggest thing the Minister has got to worry about?". It is not what I am worrying about. It is what people who use services raise. I will give you some examples. Take this question of food often being left in a place where people who are physically ill or disabled cannot get to it properly. The function is fulfilled of putting the food there but the food is not accessible to the person. The person does not eat it and that affects their health, their diet, and that can lead to very detrimental consequences for their health. What people then say is that it is their condition that caused the weight loss when actually it was not, so that is one specific example. There is the question of people feeling able to complain without retribution. We are constantly told by people, "I do not like to say anything because maybe they will hold it against me, and anyway the staff are wonderful". It is a sense of feeling that if you can be secure and confident it is perfectly legitimate to register concerns without there being retribution or without suggesting that the whole system is flawed. Then there is the treatment of everyone as an individual. Every individual has a different story, a different background, a different set of life experiences, a different set of fears maybe. None of us is the same, so the ability of the system or of staff to treat people in a very individualised or personalised way is something that is raised with us, the whole question of the way that family members are treated: are they listened to, are they taken seriously, should we be seeking to achieve a balance? In a sense it links to the rights debate. If somebody is very frail, it might be somebody with Alzheimer's, and their partner, whom do we listen to and how do we make those kinds of judgments and how do we weigh up who is the person that is speaking on behalf of the family or the individual? Privacy is raised. One thing that we all like about our own homes is the privacy that comes with that usually and the fact that suddenly you find yourself in a care setting of one kind or another. How do you maximise the fact that people have a right to privacy? The other issue is more about control and power over your own life as much as you can, however ill you are and however old you are. This plays into quite a big debate about the future of social care, for me anyway, and the whole movement towards individual budgets, services being far more controlled and directed by people themselves and carers or family members and less dictated by organisations and professionals. Obviously, in the NHS there has been an extension of choice. My own point of view is that choice is important but by itself it is not a panacea, and anyway if choice and control are to be a reality for all you have to look at the systems you put in place to support people, some of whom have never in their lives before been given the chance to exercise control or choice. It is not good enough saying, "Over to you". You also have to put in place advocacy and other support systems to make control, power and choice a reality. As well as very practical things like access to food and the way people address you there is the whole question of the one thing everybody in this room probably values, which is that the time you feel most vulnerable is when you feel you are losing control over your own life or your own work. Why is that not the same for an older people, who maybe have been fit and well for the vast bulk of their life but suddenly find themselves dependent on the NHS or on social care and in that process they lose all dignity, all respect and all control? Some of that, if we did offer these services differently, would not be necessary.


 
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