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Baroness Pitkeathley: My Lords, I, too, thank my noble friend Lord Hunt for providing the opportunity for this important debate. I add my congratulations to the noble Baroness, Lady Knight. I had the honour to be introduced with her into your Lordships' House. I am sure that we shall work together here as we did in the past, when she was so supportive to carers in Birmingham.

I want to begin with two very personal reflections, which I hope will illustrate how important the NHS has been to me. The first concerns a story told me by my grandmother when I was a small child. She was widowed in the First World War, left with two small children and very little money. The eldest of her children, my mother, went down with whooping cough, a killer in those days, which quickly spread to her brother. Terrified for their health, my grandmother called in the local doctor. The children were getting worse and she was extremely relieved when she saw the doctor coming up the path. He stopped at the front door step, peered in at the children and said, "I hope you have my fee". My grandmother answered that she would not have it until two days later when her small widow's allowance was due. The doctor turned and walked away.

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That story was very influential in my life because of the outrage I felt then, and still feel, that healthcare should be dependent on the ability to pay, that sick children should not have a right to healthcare.

The NHS, whose anniversary we celebrate this year, changed all that and at a much later stage saved my life. Diagnosed with cancer 12 years ago, I was seen by my GP on Tuesday, by a consultant on Friday morning, operated on on Friday evening and, thanks to that swift diagnosis and speedy treatment, made a full recovery, as noble Lords see, and certainly intend to live to a ripe and very healthy old age. There are 60-odd years between my stories--years which saw increasing concerns about the need for public health care available to all and free at the point of delivery; years which have seen, too, enormous changes, both in the need for care and in the way care is delivered. I believe that one of the greatest is the change that has been seen in the different way in which patients themselves are regarded, and that is the first theme I wish to address.

Welcome though the health service was in 1948, no one could pretend that it put patients' wishes and feelings at the heart of its processes. Patients were "done unto", expected to be docile and grateful, and even thought to be a nuisance. When I worked in the NHS in the 1970s the old joke about hospitals being fine if it were not for the patients was only too true. Patient power is still not as prevalent as we might wish, witness the extraordinary warning against patient involvement in a recent editorial in the General Practitioner:


    "The public's grasp of complex health service issues can be tenuous and explaining the issues will absorb both the time and resources of primary care groups. Those GPs who are involved in this process can ill afford the time, when they are faced with the more pressing issue of commissioning care".

Far from not affording the time, I think most people would agree that there is no more pressing issue than involving patients in their own healthcare. However, in spite of such occasional statements, thanks to the efforts of many patient organisations and consumer groups and to the pioneering work of some health professionals, I am sure it is true to say that patient-centred care is becoming more integrated into health processes with every passing year.

When I was a social worker it was customary to refer to those who sought help from our services as applicants; then they became clients, then users, and now they are sometimes called consumers or even customers. But you do not turn applicants into consumers simply by changing the name by which you refer to them; you have to change your systems. I believe that the policies introduced by the White Paper on the NHS show how we can do that.

There is a stated commitment to involving users and carers which I very much welcome, but many of the specific proposals also offer opportunities for such involvement. A new duty of partnership is to be introduced, for example; we must ensure that that includes partnership with users and carers.

The commitment to opening up NHS trusts and ending secrecy may be an opportunity for users and carers to be nominated to trust boards, to attend meetings, to receive minutes and so on.

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Primary care groups will have to demonstrate involvement with users and carers. My own experience of involving carers in primary care provision shows that a small input to supporting carers can have large spin-offs in improved health for carers and those for whom they care.

I also welcome the fact that health authorities will have to carry out annual surveys of patients and carers. This will give us a fantastic opportunity to collect data on patients and carers throughout the United Kingdom and to ensure that their needs are more fully recognised.

Opportunities certainly will exist. However, systems will not be changed overnight and attitudes will be even harder to change. We must acknowledge that professionals trained in one way find it hard to react in another. If you have been trained to assume that knowledge about illnesses and conditions is in some way the property of the professional, it is hard to learn how to share that with patients and their families. But assuming that patients and families know more than they do can similarly be a problem. A carer who was looking after her recently discharged husband who was recovering from a stroke was terrified when he had a small seizure in the middle of the night. When she took it up with the consultant, he said, "Oh yes, that's very common; it's nothing to worry about". Not unnaturally, the carer thinks that, if it is so common, it is a pity that no one bothered to mention it before. As one patient said: "When you question some health service personnel you get the feeling that they think you are questioning their knowledge, whereas you only want to know what is best".

We must also remember the imbalance of power which so often exists between professionals, patients and families. Because the professionals have a monopoly of the jargon, and often of the information too, and because the patient's image of professionals may make him or her reluctant to challenge or even question them, it is perhaps not surprising that the power in the relationship is so unevenly distributed.

I emphasise that keeping the power in their own hands may not be intentional on the part of the professionals. They may genuinely believe that people are better off not knowing about their illnesses. Often they are genuinely trying to enable the patient to participate equally. Training of NHS professionals must include knowledge of the importance of involving patients at the earliest possible opportunity.

The second theme I wish to address is co-operation between health and social services. Co-ordination or even communication with other services was not exactly a theme of the early health service either. Everyone who has worked in social services will give you their own horror story. In the 1970s I wrote a book about hospital discharge planning which showed that there was not any such planning. Although communication has improved, everyone working in health or social services or at that interface can similarly give you their own "discharge from hospital without warning" horror story.

The boundary between health and social services has long been recognised as problematic. But we should remember that consumers neither know nor care who provides a service; they want a service which is reliable

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and understandable. The boundaries are even more problematic when they involve a shift from free healthcare under the National Health Service to care provided by social services, which nowadays is inevitably means tested.

All authorities produce evidence of strategic agreements on hospital discharge, but that by no means guarantees that they operate that way in practice. Sadly, developments in recent years have made the situation worse, not better. The way in which the introduction of new community care policies coincided with the rush to the market in the NHS, with its emphasis on through-put and rapid turnover, meant that a most unhealthy competition grew up between health and social services as to where responsibility lay.

Good working relations between health and social services are possible, but they depend on trust. Pooled budgets will help, but it often comes down to relationships. Joint working can also be improved by ensuring that good practice is widely disseminated. I welcome the proposals for this in the White Paper. I hope that the terms of reference for the national institute of clinical excellence and the national performance framework will be developed in close consultation with patient representative groups.

If co-operation between health and social services is to operate really effectively, we must understand that preventative services for patients and their carers often do operate at the margins of health and social care and disputes are therefore very tempting. Everybody knows stories about only medical baths being provided and no social baths being allowed. There are many other stories like that. What other services are provided at the margin? What about rehabilitative care, which we used to call convalescence? What about back-care support for carers so that they do not injure themselves and can therefore maintain their own health? What about chiropody services which enable frail older people to keep mobile and therefore prevent their admission to hospital? To engage in disputes about where responsibility for such services lies is to ignore the important bigger picture--not which agency pays, which budget it appears on, but what is the long-term outcome for the patients and their families.

I conclude by citing the experience of a carer which will form part of an important report on carers' experience of the NHS to be published by Carers National Association in June. She speaks of the 18 years of caring for her severely disabled son and lately for her husband following his stroke. She says:


    "We've had both good and terrible experiences within the NHS--excellence of care provided in the early stages, through a handful of dedicated neurology and paediatric specialists, and through a team of complementary practitioners. We've got a lot to thank the NHS for and especially for those people within it who've been prepared to 'go the extra mile' and work in partnership with us. In the end, that's what's enabled us to cover this long, long haul. They were very good with my son and husband, and my son's favourite activity is being ill enough to spend a week or so with the NHS--for years, his bouts of pneumonia etc., were my only form of respite care! Thank you, NHS--I hope you are looked after as much as you deserve".

I am sure we all hope so too.

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4.28 p.m.


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