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A survey was done last year by the SIA which came out with some really quite alarming findings. Some 10 per cent of spinal cord injury patients did not receive any specialist care from a spinal cord injury centre. Some 21 per cent of new injuries did not get admitted within one month of their injury, and the average time from injury to referral was 28 days. It is salutary to read the brief that the SIA sent me, which says that for injuries sustained in rugby football, for example, two-thirds of those with complete spinal cord injury as a result of cervical dislocation who are looked after properly within four hours of injury make a full recovery. Only 5 per cent of those who are looked after properly after four hours will make a useful recovery and none will recover fully. It is rather like stroke, where you have to make certain that you go through a routine religiously and very swiftly after the incident has happened. If you do not do so, the results can be really very poor; the prognosis is poor.
That is the background. I hope that the noble Baroness will not mind my setting it out for her amendment as I have. It is important that the Minister understands what we are talking about here; this is a really very important area of specialist care, which I do not think receives the attention that it deserves.
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Baroness Wilkins: I strongly support this amendment, to which I have added my name, and I shall be reinforcing much of the background that the noble Earl has just given. I declare an obvious interest, as someone who was paralysed at university more than 40 years ago from a spinal cord injury to my neck, and as vice-chair of the all-party group for the condition.
The number of Peers with spinal cord injury in this House misrepresents its incidence in the general population. Until Lady Darcy’s untimely death last year, there were three of us in a House of around 750 Peers, which far exceeded the estimated numbers of spinal cord-injured people in the general population, which are seen to be low enough for spinal cord injury to be defined as a specialist condition under the Department of Health national definition set. Currently, under Sir David Carter’s Review of Commissioning Arrangements for Specialised Services, published in 2006, spinal cord injury is one of the conditions which should be commissioned at regional level of the health service by specialised commissioning groups, not at the national level. But this is patently not working, as we have heard described so graphically by the noble Baroness, Lady Masham. What is urgently needed is a single commissioning body, as proposed in this amendment, and a national bed bureau.
What is the current position? The precise numbers of people with spinal cord injury in the country are not known and there is no easy means of establishing them. The most reliable estimate is that there are about 40,000 spinal cord-injured people in the UK at any one time and around 700 new traumatic injuries each year. In percentage terms, these figures are small but, in terms of absolute numbers, 40,000 is still a significant group. There are also non-traumatic cases of spinal cord injury from a whole range of causes, such as viral infections, spinal tumours and so on. The incidence of these is thought to be substantially greater than for traumatic spinal cord injury, but, again, the precise numbers are unknown.
There are an estimated 700 people who need emergency first-time admission to a specialised spinal cord injury centre each year. Admission needs to be as soon as possible after injury in order to minimise the damage and not cause additional and entirely unnecessary complications. As noble Lords will hear many times, the earlier a spinal cord-injured person is admitted to a spinal cord injury centre, the less will be the cost of their care and the better will be the outcome. But there is also a vital need for spinal cord injury centre beds for readmission of both elective and emergency spinal cord injury patients.
There is enormous concern among the growing and ageing spinal cord injury population about the inability of district general hospitals to provide them with appropriate care for their existing condition, if they are admitted for non-spinal cord injury conditions such as a broken leg. Their concern is not about the hospital’s ability to treat the broken leg but about the lack of experience and knowledge to provide appropriate pressure care and bowel management. I had not needed to have any in-patient care for more than 35 years, because of my excellent speedy initial care, but I have been admitted twice overnight in the past few years for
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4.30 pm
Over the past two years the Spinal Injuries Association has been conducting research with the spinal injury centres to try to establish the true situation in the country. As we have heard, it found that the average time from injury to admission to a specialist spinal cord injury centre for newly injured patients is 46 days—more than six weeks. This is the most crucial time for dealing with the trauma and preventing complications and can reduce the catastrophic effects of the injury. As a result of these serious delays, lengths of stay in specialist SCI centre beds are then greater than need be because the patients have complications that might have been avoided if they had been admitted more promptly. This in turn exacerbates the pressure on specialist beds and reduces capacity for specialist care. It is thought that at least 10 per cent of people with a spinal cord injury never receive specialist care from an SCI centre at all. What that means in terms of unnecessary complications, depression, increased life-long impairment and lack of rehabilitation is appalling.
I turn to the issue of readmission capability for people with SCI. A study in 2000 of readmissions to SCI centres found that almost half—42 per cent—of established SCI patients did not gain admission to the specialist care centre that they needed. What capacity can the present SCI service offer to meet the needs of both new and existing SCI patients? A total of only 450 beds are distributed between eight NHS SCI centres within host NHS trusts in England and one each in Northern Ireland, Wales and Scotland. These centres developed in response to the Second World War and the needs of heavy industry and the coal mines, so they are generally not near contemporary centres of population. As a result, patients can be referred to centres hundreds of miles from their home and family and the scene of their accident, which can be for months, or even years, on end. If you live in Cornwall and need specialist care for an SCI, you have to travel as far as Salisbury for the nearest SCI centre.
A further complication is that the host trust will too often divert funds away from specialist SCI services for which they were intended to plug leaks elsewhere within the trust. Trusts also have a tendency to use specialist SCI beds for non-SCI patients if they are unoccupied. A national bed bureau for patients with SCI, as proposed in this amendment, would help to ensure that the existing bed capacity was used to its optimum level. It would help to address the current wasteful situation where SCI patients spend weeks waiting for referral in a district general hospital; as we have heard, they often develop additional complications, such as pressure sores, which take months for the specialist centre to eradicate, so filling a bed for much longer than anybody wants.
The amendment would provide every A&E department with a systematic and coherent system for placing their spinal cord-injured emergencies in specialist care.
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Many Members of the Committee will have seen the article about Daniel James in the Sunday Times on 15 March. He was paralysed in a rugby accident, taken to a local hospital and moved unnecessarily many times, and then had to wait until the next day for an MRI scan. He was put last on the list for the scan because the hospital was not aware of his injuries. His hands and arms were moving when he first had his accident, but after having to wait for an ambulance, which arrived at about 10.30 at night, when he finally arrived at Stoke Mandeville he had lost all movement and feeling in his fingers, which he did not regain. As a result, he has the sad renown of being the youngest person to go to Switzerland for assisted suicide.
Crucially, a national bed bureau would mean that we would start to get a true estimate of the level of spinal cord injury service that is required. As my noble friend Lord Darzi said in response to Amendment 35:
“Commissioning cannot be improved without high quality information”.—[Official Report, 26/2/09; col. GC 178.]
With a firmer grip on the numbers, I hope that we can begin to reverse the current decline and ensure that there are no more cases of people waiting weeks for referral to the care and rehabilitation that they so desperately need.
The Lord Bishop of Ripon and Leeds: I, too, associate myself with the amendment of the noble Baroness, Lady Masham. That is not simply on the basis of Yorkshire solidarity, commendable though that undoubtedly is, but comes from my experience in particular. Most of my ministry has been in coal-mining communities. The noble Baroness, Lady Wilkins, briefly referred to coal mining as an originator of the injuries of which we speak. I have awareness from working in a coal-mining village of the difference in treatment, and therefore in results, that is unique to the particular set of spinal injuries.
Some with mining injuries had excellent treatment and have recovered or, at least, have been enabled to cope well with their injuries. Others, whose original injuries had been no more serious, remained ill and, in some cases, died quite unnecessarily, because they had not been treated quickly enough or with sufficient skill. There is a particular need for a national policy on spinal injuries, which are different from the other serious injuries that we see and of which we speak.
I was almost surprised to hear that the number of new cases is as low as 700 a year. My own experience is of quite significant numbers. Certainly, if we add together both the immediate traumatic injuries, and those which appear through illness and infection, it is a significant number of people. Significant changes could be made in this area with significant results if the amendment were accepted into the Bill. I hope that we will do exactly that.
Lord Walton of Detchant: I give general support to the principles underlying the extremely important amendment. Having a national bed bureau for patients with spinal injuries is a wholly admirable idea, as is
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As the noble Baroness, Lady Wilkins, has said, the existing spinal cord injury centres have grown up largely for historical reasons in places where, if one were planning the service from the beginning, one would not necessarily place them. I knew the late Doctor Ludwig Guttmann personally. He was most outstanding and inspirational. His idea—his vision—was to develop that famous spinal injuries centre at Stoke Mandeville, where the quality of treatment, management and rehabilitation and after-care of patients was of such very high quality, as it continues to be today. The National Health Service has funded it substantially, but a lot of the funding for the unit and many of the facilities that have been developed there have come through charitable activities—not least those of Jimmy Savile and others, who have produced an enormous amount of funding.
I have to declare an interest, first, as a patron of the Spinal Injuries Association and, secondly, because my younger daughter, who suffered a spinal injury three years ago, received outstanding care at Stoke Mandeville. Elsewhere, for historical reasons, Dr Silver established a nascent spinal injuries centre in Southport, which has grown and developed. He later became the director of Stoke Mandeville.
For many years in the northern region, which is where I have lived and spent much of my professional life practising neurology, few services were provided for spinal-injured patients. I was brought up in the middle of the Durham coalfield in a mining community. At one stage, there was an attempt to build a spinal injuries unit in a district general hospital at Hexham, but the staffing levels and the ability to attract the appropriate level of staff, including nursing and medical, were not good. Eventually, the region decided to establish a spinal injuries unit at Middlesbrough. That unit at the James Cook University Hospital, Middlesbrough, has an excellent reputation and has developed very well. But Middlesbrough is 50 miles from the biggest centre of population on Tyneside. The region includes Carlisle and Whitehaven. Patients suffering spinal injuries in the west of the region have to travel enormous distances to get to that centre in Middlesbrough. The unevenness of distribution of these centres across the country is unsatisfactory, despite the level of service that they give.
The one caveat that I have to say to my noble friends Lady Masham and Lady Wilkins is the heading of the proposed new clause, “Admission of patients with spinal injuries”. It is important to recognise—I speak as a neurologist—that these centres also treat effectively patients with non-progressive spinal cord deficits, illnesses such as transverse myelitis, spinal artery thrombosis and so on, which also cause quite severe degrees of paralysis.
I shall never forget, in the first year that I was a consultant, being called out by a GP at lunchtime to see a boy aged 17 who had cycled to school that morning. On the way home, he developed weakness in one arm and subsequently in the other arm, along
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That kind of non-traumatic neurological illness also needs to be handled in these units. It is important to take account of all those needs as well. It is crucial and, I fully appreciate, extremely difficult for the Government to overlook the historical background which led to the establishment of some of those units, frankly, in the wrong places; that is, remote from major centres of population. But the idea of having a national bed bureau and a single national commissioning service to improve the facilities of spinal injured patients and patients with spinal disease causing paralysis across the country is admirable. Hence, even though I would perhaps dabble a little with some of the wording, I strongly support the principle of this amendment.
Lord Palmer: The Minister was just a wee lass aged six when my noble friend had her terrible accident. She has made the case extremely strongly for this amendment, as have the noble Earl, Lord Howe, and others. Her Majesty’s Government claim to be a caring Government and I desperately hope that they will accept this amendment, which I believe is one of the most important amendments tabled so far to this Bill. I give it my wholehearted support.
4.45 pm
Baroness Greengross: I, too, support the amendment tabled by the noble Baroness, Lady Masham. The noble Earl, Lord Howe, spoke about stroke, of which I had personal experience when the wife of an American relative came to this country some years ago and had a serious stroke. She was taken to one of our best teaching hospitals, not far from here, in the middle of the night. I spent the night there begging the staff to give her a brain scan. Her husband arrived, asked for the same thing and was told, in no uncertain terms, that that is not what we do in this country. That woman still cannot speak. Our practice has changed, but the average person cannot argue. If people with spinal injuries are in the wrong place, they are not given access to the right sort of care very quickly. We heard about the particularly moving tragedy of Daniel James. We cannot care in the way that we would want to for people who suffer these serious accidents. I hope that we can persuade the Minister to accept this amendment.
Lord Tebbit: I do not think we should forget how lucky we are to have had this amendment proposed by the noble Baroness, Lady Masham. I say that because she will never forget how lucky she was to survive her accident all those years ago. The survival rate for people with such injuries was pretty low at that time. Indeed, if we may put it in terms of before Guttmann—and what an extraordinary man he was—the life expectancy of people who had suffered a severe spinal injury was very short indeed. If they recovered from
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Noble Lords may recollect that following the IRA/Sinn Fein attempt to murder my noble friend Lady Thatcher, who was then the Prime Minister, my wife and I, who were injured, were taken initially to hospital in Brighton and then, if my memory serves me rightly, she was transferred a week or two later to the spinal injuries unit at Stoke Mandeville, and I was allowed to accompany her. I might say in passing that it was later realised, just before I left Stoke Mandeville Hospital, that I had not been a fake; I had a fractured spine. I had fractured a vertebra in the course of the bombing, and it was not noticed until just before I left hospital. Oddly enough, it was the second time that I had fractured a vertebra and nobody had noticed until some time afterwards. I have been very lucky indeed in my life. From that, I conclude not just that I have been lucky, but that the diagnosis of such injuries among other traumatic injuries in a patient is not quite as easy as we might suppose at times. More to the point, it now seems quite likely that my wife’s injury was more complex than the early diagnosis suggested. It might well have been better for her had she been airlifted straight to a spinal injuries unit immediately she was extricated from the wreckage of the hotel. To me, that underlines the force of what the noble Baroness, Lady Masham, and other noble Lords have said.
Twenty-five year ago, my wife and I were pretty lucky in that the spinal injuries unit at Stoke Mandeville had recently had been rebuilt, not least, as has been said, due to the work of Jimmy Savile. Things were different then from the way they are now. It was accepted in those days that a unit such as that at Stoke Mandeville should have vacant beds and that the bed occupancy rate should not be anything like as high as is now demanded. Of course, those empty beds were held at units like Stoke in those days for spinally injured patients. Now the box-ticking bed occupancy rate philosophy that has permeated the National Health Service requires that those beds are occupied. It is regarded as a failure if they are not occupied. Since spinally injured patients do not turn up obligingly to replace one who has just been let out of hospital, the only way that can be accomplished is by putting into such a unit patients who are in hospital for general surgery. The result is quite catastrophic, both for patients and for the health service. First, I suspect that many of those patients would be better off not in the spinal injuries unit but in the mainstream hospital.
Secondly, as we all know from some of the tragic incidents that have occurred, someone who is in need of a bed in a specialised unit may be weeks in getting one. Their recovery will be at least grossly impaired, and it may be that they will not recover at all. I emphasise that this is not just a matter of the medical and nursing care; it is a matter that in those units, patients generally stay for quite a long time. Many are young people who have suddenly been transferred from a life of action and taking risks, which is how they were before they arrived in hospital, and who find themselves facing a very different future.
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My wife and I saw a number of patients who simply could not cope with that. They just turned their faces to the wall and died. They pulled up their roots. That so many survived was not least due to the peer pressure of other patients, which was enormously important, as well as the remarkable nursing care that was offered. That is in danger of going. The last time that I was at Stoke Mandeville, a year or so ago, the medical staff were gravely concerned at the fact that their bed occupancy rate was high solely because they had patients there who did not need the services that they could provide. Equally, they knew that elsewhere there were patients who desperately needed those services and who were blocking beds in other hospitals. I say that they were blocking beds because sometimes they were in high dependency beds, and even intensive care beds, where they did not need to be. They were damaging the interests of other patients.
Like the noble Baroness, Lady Wilkins, my wife recently had to have an overnight stay at the Royal National Orthopaedic Hospital. There is an excellent spinal unit there, and it is a wonderful hospital. It somehow underlines my belief that very often the best hospitals are in the worst buildings; and there are some pretty awful buildings there. It is a hospital where I find that people are happy. The atmosphere of the hospital is a quite extraordinary thing. My wife was on a general ward for an operation that was not directly related to her spinal injury, although it to some extent stemmed from it. The staff there were jolly good, nice people, who well trained, but they were not trained in dealing with a spinally injured patient. Fortunately, that hospital is very wise, and it was able to provide accommodation for one of my wife’s carers to go with her. Otherwise, there would have been very considerable difficulties. It is much quicker to get a pressure sore than it is to cure one. It can be extremely expensive, both to the patient and to the health service.
So we are looking at a system which has come not to satisfy the needs of the patients. As I have said, the spinally injured may make much less of a recovery than might have been, with all that that entails for the patient, their family and, of course, for the public purse, with the costs which rattle on down for many years afterwards. Something needs therefore to be done to ensure that those beds are held open, ready for spinally injured patients. If that is not to be an inefficient system, it needs some form of backup of the kind which the noble Baroness, Lady Masham, envisaged. A little bit of planning could avoid great suffering and expense. It is time that it was done.
Baroness Emerton: I thank the noble Baroness, Lady Masham, for proposing the amendment. It is evident from what has been said around the Committee today that the clinical pathways have not been sufficient to meet the needs. It is around the clinical pathways and quality of care which the Bill centres. There is obviously a great need, particularly in general hospitals, where patients go inappropriately and where there is insufficient knowledge, training and skills to be able to cope with spinal injuries and neurological conditions. While other conditions may well come to the fore by our saying that the clinical pathways are not being
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Baroness Barker: As my noble friend Lord Carlile has put his name to the amendment, perhaps I might make just one or two brief comments. Nobody ever accused the noble Lord, Lord Tebbit, of not having backbone and of coming away uninjured; we do not realise quite how tough his backbone is.
I take three key points from the debate. First, as the noble Earl, Lord Howe, said, the services which we have are the result of historical accident and great charitable effort—I have no wish to denigrate that at all—but I am not sure that those services would now be deemed to be the best if we were to start from scratch.
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