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There are real dangers that clinicians can be inappropriately pessimistic, abandoning treatment too early, or inappropriately optimistic and zealous. When a patient’s complexities and previously expressed wishes are known, comfort care, rather than intensive
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The ongoing provision of potential support requires an infrastructure investment and an attitude by management that recognises the same duty of care as the GMC expects of doctors. It cannot be paid for as a separate item, but needs to be built into contracts as a quality marker and audited. That way we can stop patients falling through the net in a world where care has become increasingly fragmented, both through its complexity and through the change in working hours and work patterns of clinicians.
7.45 pm
Baroness Campbell of Surbiton: My Lords, I thank the noble Baroness, Lady Finlay, for this important dinner-break debate. I also thank the Minister for her half-announcement, and feel I should explain. Around this time of night my stats begin to drop—that means my oxygen levels start to decrease—and I felt that should I get halfway through my speech and start going blue, I did not want the noble Lord, Lord Darzi, to have to resuscitate me. So I asked for permission for my noble friend Lady Finlay to fill in while I recovered, and that was agreed. I thank the House for that reasonable accommodation, although I seem to be getting through a lot since I arrived.
Specialist hospital units are of particular importance to me and other severely disabled people, and I support their having an obligation of ongoing care towards their patients when a clinical crisis occurs, whenever possible—although it would not always be possible. More disabled children and adults now live longer with complex conditions. We need specific expert medical services in order to literally stay alive, to be healthy and to be active. Specialised hospital units play an essential part in that equation. Speaking personally, the Lane Fox specialist respiratory unit in St Thomas’s Hospital is a vital component of my health, safety and happiness.
I have experienced the best of times and the worst of times at the hands of the NHS. When I was born, doctors told my mother to take me home and enjoy me because I would not live the year out. At 49 years old I am still defying that prediction. Over the years my survival has depended upon many wonderful healthcare interventions, but particularly the interventions from specialist hospital units.
I am lucky to be a patient of the unit at St Thomas’s. It provides highly specialised care for patients throughout the United Kingdom who have severe breathing difficulties due to accident, illness or, like me, neuromuscular disease. The unit supports more than 650 ventilated patients at home through outreach programmes, telephone advice and, the most important feature, in-patient care when seriously ill—if, and only if, a bed is available. In my case, only once in 10 years have I had to wait 24 hours for a bed to become free.
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The unit knows that the local general hospital is unlikely to have the knowledge or equipment to intervene in the time and manner necessary to ensure survival. Only four years ago I unfortunately found myself in A&E in a local hospital, where my husband had to negotiate extremely hard to get them to agree to resuscitate me if I should go into respiratory failure. I was lucky; I happen to know people in the Department of Health, and a video of my experience was made and shown to every chair and chief executive in the NHS. But it should not have been so.
In addition, the unit at St. Thomas’s is the principal centre for advice to the UK’s 30,000 polio survivors. Its holistic management programme includes respiratory, orthopaedic and pain management consultants. The Lane Fox unit is unique, not just for its clinical expertise but, equally, it celebrates disabled people’s lives. It understands that patients are far more than their diagnosis; it recognises the need for treatment to fit in with the demands of life, rather than the other way round, however severe your condition.
Dr Geoffrey Spencer, who developed the unit in the 1960s, pioneered the use of home ventilation. He even went as far as to organise trips abroad for people in iron lungs—totally contrary to every health and safety rule in the book. He believed in the expertise of the patient. The unit has gone on to develop a strong patients’ association, which has had profound influence over its design and nursing practice over the years. In addition, the association has raised more than £2 million since 1984, a testament to patients’ confidence in the unit and the collaboration that they have sought with the health clinicians.
Today the design of the unit and its facilities are completely disability-friendly. It includes wheelchair-accessible showers and a place for PAs to stay when they are needed. The unit is led by Dr Craig Davidson and ward manager Natalie Grey. They and their teams are totally committed to supporting profoundly disabled people to participate actively in society. Theirs is the hallmark that our National Health Service must perpetuate if all patients are to be regarded as having equal value.
Without this specialist centre, I know that I would not be with you now. It enables patients like me to feel safe and confident and to live life to the full. Most importantly, when we are in crisis, we know we will live through it because of the expertise mixed with the knowledge of who and what we are.
7.53 pm
Lord Crisp: My Lords, my noble friend Lady Finlay has once again asked a Question which gets to the heart of quality and health systems. Indeed, this debate is about the quality of the health system itself; it is about continuity and the co-ordination of care. Professor Don Berwick, an American, spoke movingly about the NHS at last week’s celebrations. In asking himself what he wanted in an American system, he cited several examples from the NHS. He said, “What I would really like is a system which remembers me”. He did not want a fragmented system. Those seem very wise words.
I speak not with the first-hand experience of the patient, nor the second-hand experience of the clinician—if I may put it that way, with clinicians in the Chamber—but
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I want to highlight two examples which draw out some of the detail. The first concerns the London Lupus Centre. I spoke recently to Professor Graham Hughes, who runs this specialist centre, serving a special group of patients, and asked how he dealt with this sort of problem. He said that staff keep in touch with their patients and get about three or four calls daily from clinicians asking for advice and help regarding patients who have been admitted to other hospitals. He said that in general they dealt with the clinicians directly over the telephone and that only in the rarest cases did they bring people back to their service.
The message from this service seems to be that its patients were well informed and understood their condition. The London Lupus Centre clearly believes that this is part of its responsibility. I asked Professor Hughes whether he expected anyone to put this in contracts or take payment for it and he said no, it was just part of the arrangements. Interestingly, he was also very sensitive to the feelings and behaviour of the clinicians in the general hospital who were treating his patients. Sometimes specialist centres are the right place, and sometimes they seem almost to wash their hands of patients who are elsewhere. Occasionally, it is the other way round, and specialist centres try to hang on to people too much. Somewhere, there is a balance. The lupus centre has a good, balanced, common-sense approach, with the focus very much on the patient’s individual needs. There is a dialogue; it is a system which “remembered me”.
Let me turn to the mental health system, which is much more complex. I am indebted to a discussion with Professor Rachel Jenkins of the Institute of Psychiatry. There is much more danger of fragmentation: people cared for in specialist mental health units may become physically ill and need to be cared for elsewhere. Similarly, people in units who have a physical illness may need mental health treatment. There is much more moving around, with many more people and a much wider range of specialities involved in such discussions. There are also problems in mental health units with people recognising the physical or, in more acute hospitals, the mental health condition that is involved. There are many more difficult issues.
What are the policy options open to Government? There is one thing that happens in mental health that may have wider relevance—the case management of patients who have a recognised diagnosis and condition. There are people who are responsible for managing across the gaps and making sure that care is provided in the whole range of settings, whether there are physical or psychological needs. There are other mechanisms; after all, GPs can do this to some extent. With regard to maternity care, women in most services carry their own notes and provide a level of continuity themselves. There is the development of care pathways in various areas.
As a former chief executive of the NHS, I probably know better than anyone how very difficult and inappropriate it often is to be prescriptive from the centre. So what policy options are available? There are
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How does the Minister envisage that world-class commissioning will make progress in ensuring that these visions of continuity and co-ordination of care will take place in the NHS? What means are there for doing that? Is this about making sure that good examples, some of which we have heard of tonight, are recognised? I am reminded by the speech of my noble friend Lady Campbell that I was the chief executive who arranged for that video to be shown to chairs and chief executives. I appreciate that there is at least one chair in the Chamber; chairs and chief executives are not normally moved to tears, but people were deeply impressed by that example of what a health service can be like when it is wonderful and remembers you, and what it can be like when it does not.
What can the Minister do to make sure that those models are adopted? He cannot do it by mandating, because it is at much too detailed a level. Can he do it by example? Can he incentivise? To use the new language that I understand is around at the moment, can he help nudge the commissioners in the direction of ensuring that the services that they commission provide this level of continuity and co-ordination? Will he encourage them to recognise that specialist units have a vital role and that they can operate only by having a good relationship with the more general units that surround them? Will he ensure that commissioning makes sure that this is a system which “remembers me”?
8.01 pm
Baroness Masham of Ilton: My Lords, I thank my noble friend Lady Finlay of Llandaff for asking this vital Question. I have to declare an interest as life president of the Spinal Injuries Association. Many of our members are worried that they might not be able to be admitted to a spinal unit which knows them, knows how to nurse them and has their clinical notes when a crisis occurs. I have been treated in a spinal unit.
I give as an example an accident that happened to me. I was pulled out of my wheelchair at the parliamentary dog show in 2000 by my Great Dane, which was protecting me from a pug dog, and I fractured both legs. I was admitted to the Chelsea and Westminster Hospital with five fractures, three in the right leg and two in the left. The wrong plasters were put on the wrong legs and were not cut in half as they should have been for an inspection of pressure due to no feeling. Before long, I felt growing problems. I was running a temperature and suffering spasms. When I had to do a manual evacuation, as paraplegics have to do, obtaining two glycerine suppositories was like getting blood out of a stone.
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With the assistance of my girl helper, whom I had to call, I succeeded in evacuating in bed, but the procedure took so long that lunch had arrived before I had finished. It was not very satisfactory, especially as it was a mixed ward. The registrar told me that he did not agree with the views of the consultant. How right he was. I was lucky enough to be able to be transferred to Stoke Mandeville spinal unit after a week. When the plasters were taken off, I had two black heels with pressure sores, which took a year to heal. I had an operation for external fixators on both legs, which had to remain for about five months. I stayed in the spinal unit for a few weeks before going home to Yorkshire, where I received periodic help from the local hospital. But the crisis was over. It could have become a life-threatening clinical crisis if I had not had the correct treatment and nursing in a spinal unit. Doctor Guttmann, medical director and founder of the spinal unit at Stoke Mandeville Hospital, always told patients that if they got into medical difficulties they could go back to the unit and receive the special care that they needed.
This debate arose out of the tragic death of my late noble friend Lady Darcy de Knayth. Before Christmas, she was concerned because she was coughing up a little blood periodically. She was found to be anaemic and was given two pints of blood. I was very concerned that she had blood without a diagnosis. Davina had been waiting to go to her local spinal unit at Stoke Mandeville, but had two appointments cancelled. As I was very worried about her, I went to the Minister, the noble Lord, Lord Darzi, who said that she could go to St Mary’s, Paddington, to be diagnosed. I thought that that was an excellent suggestion and told her so. When Davina went to her GP, he said, “I am in charge of your case”. What happened to patient choice?
After Christmas, she told me that it was thought that there was something wrong with her bone marrow. I again tried to persuade her to go to St Mary’s. She was still waiting for the spinal unit. When my husband got into severe difficulties in Yorkshire, I was able to take him to St Mary’s, which diagnosed a problem and helped immensely.
During the parliamentary Recess, I was telephoned to be told that Davina had had a seizure and had been admitted to her local general hospital against her wish. The paramedic in the ambulance, her physiotherapist and her GP all thought that she should go to the spinal unit, but they were told that there was no bed. Davina relied on the safety net of being able to go to a place that she knew and where they knew her, but she was denied it when she was at her most vulnerable.
At Wexham Park Hospital, there was no suitable mattress or bed. She spent six hours in A&E and sat on her Roho cushion for 24 hours in fear of getting a pressure sore until a mattress and bed were hired. Davina was convinced that she had autonomic dysreflexia, which may occur in quadriplegics and paraplegics whose spinal cord lesions are above the level of T6. Wexham Park had never heard of it. I was in telephone contact with her children, who were becoming desperate. At that point, I thought that the only person who could help was Professor Mathias, an expert in autonomic dysreflexia who had done research at Stoke Mandeville. He was going to see her on the Sunday, but Davina died at 1 am.
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If only Davina had gone to the spinal unit, she and the family would at least have been spared such stress as they had. The family had a private post-mortem undertaken and Davina’s notes were sent to them by Wexham Park and the GP within a few days, but her son, who was next of kin and executor, is still waiting for the notes from Stoke Mandeville. This is just adding to the stress of an unfortunate situation.
The Darzi report stresses that patients should have choice and good quality of care. That is admirable. However, while there are many specialised units which deal with all kinds of patients with very rare conditions, they operate on a supra-regional or national basis. They are often flooded with patients, and some beds are blocked because of home circumstances. How will treatment be provided if there are not enough beds and a crisis occurs? That can be the only lifeline that such patients have. I hope that the Minister will take up the challenge and do his best for these specialised units and the patients who depend on them.
8.09 pm
Baroness Barker: My Lords, in this period when the NHS is quite rightly celebrating its 60th birthday, it is good to have an opportunity—I thank the noble Baroness, Lady Finlay, for providing it—to reflect back over those 60 years, of which the staff of the NHS can be immensely proud. We also have the Minister’s review to look forward to. This issue of specialist services in the NHS is a very apposite one.
I suspect that one thing that has not changed in all the 60 years of the NHS is that, if you really want to know what is going on, you ask the porters. I say that because last year a very good friend of mine was being wheeled in to have an operation in her district general hospital and the porter said to her, “I don’t know what you’ve got, love, but it’s something really special—they’re all in here with cameras and everything”. He was dead right; his diagnosis was spot-on. She had a one in a million condition, which was being operated on, and the results of that would not only be the pride and joy of the surgeon’s career but would be beamed round the world to help other people.
The noble Lord, Lord Crisp, is absolutely right. We have one of the biggest and most complex organisations in the world, with massive potential to do good. The key thing about it is that we still search for the best systems. Looking back on the NHS over 60 years, when it started the equipment that people had to use was largely static and could not be moved. Travel was tremendously expensive, yet people went great distances to access some of the revolutionary care that was, at that point, free to them for the first time. Nowadays, equipment is highly portable and we have the internet through which diagnostics can be shared very easily, and so on. Communication is much easier, yet we still have not cracked that thing that the NHS has always tried to do—to get the patients to the right clinicians in the fastest possible time. Much of that is what the Minister’s review continues to be about.
One reason for that problem is that urgent care clinical pathways are complicated and blocked. On the reasons why they are blocked, one of the most difficult things, which gets in the way of specialists and specialist
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Furthermore, if we are to ensure that patient pathways are clear, we need perhaps for the first time to recognise that the complexity of where staff are deployed has a direct bearing on whether those pathways work. It is infinitely more complex now; staff tend less and less to be stationed in one institution. We need to look again at the role of telemedicine and things such as CT scan interpretation to enable clinicians to ensure that they can cover different institutions. Perhaps more than that, we need to develop new protocols, which enable specialist staff to work and to advise colleagues across a range of institutions. A&E and trauma units depend on having a mix of specialists very close at hand to advise on complexities. If we are to fulfil the Minister’s vision of ensuring that patients get to specialists much more quickly than they ever have before, we will have to ensure that those specialists can work and advise away from their base units. We do not yet have the protocols in place to ensure that that can happen across different trusts.
One final thing that we need to do is to redefine the role of community hospitals. Rehabilitation also needs to change to free up space in specialist units. People like community hospitals; it is one of the great testaments to those hospitals that many of them predate the NHS and have stayed, despite every NHS review that has ever taken place. The trouble is that, much though people like them and the very local presence of the NHS, their role is ill defined. I suspect that if for the next 60 years we have the high-tech systems that clinicians need and want to access patients much more quickly, we will have to give the public a local point of access which they trust will enable them to go forward into those specialist units very quickly. I hope that the noble Lord, Lord Darzi, can work on those protocols for the next 60 years, as that will improve patient care.
8.16 pm
Baroness Hanham: My Lords, in preparing for this debate, I was trying to second-guess the problem that it sought to address. In her speech, the noble Baroness, Lady Finlay, widened the debate beyond what one might have expected from its title. I do not think that there is anything wrong with that.
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