Health: Polymyalgia Rheumatica and Giant Cell Arteritis
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The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I am grateful to the noble Lord, Lord Wills, as I am sure are all noble Lords, for raising the need for early diagnosis of polymyalgia rheumatica and giant cell arteritis and for making clear the serious results that can follow should the diagnosis be missed or appropriate treatment delayed.
In addressing his question, perhaps I may start with what may be the most obvious and important issue: namely, what is out there for clinicians in terms of commissioning support and training. As the noble Lord will be aware, there is already excellent guidance available on these related medical conditions, both for healthcare professionals and for patients. The British Society for Rheumatology, with partner organisations, has recently published clinical guidelines for both conditions. The society has an active strategy for disseminating these guidelines widely among healthcare professionals, including GPs. Summary information for GPs is available from Patient UK and from clinical knowledge summaries.
I am advised that the importance of prompt diagnosis of giant cell arteritis is underlined in both the undergraduate medical curriculum and in post-graduate training for GPs and relevant hospital specialists. Both NHS Direct and Patient UK carry information for patients.
This of course underlines that it is not the Government who improve the quality of patient care; it is clinicians. The role of government is to provide a framework that enables clinicians to get on with it, as the noble Lord, Lord Darzi, eloquently articulated in his publication in 2008, High Quality Care for All. Now, with the Health and Social Care Bill, we are breathing life into that framework. I genuinely believe that this will enable clinically led quality improvement of the kind that the noble Lord is seeking for the care of polymyalgia rheumatica and giant cell arteritis as much as it will for other conditions.
Commissioners of healthcare are faced with a complex task. Determining the relative priorities between different clinical conditions requires a difficult and largely technical balance between a number of factors, including the strength of the evidence base, the size of the population affected, the impact of the disease if not properly treated, the disparity between current standards of provision and best practice. The commissioners also need to take into account their duties to promote patient choice, to promote public health and well-being and to tackle inequalities in health outcomes. It is a complex set of interlocking tasks that, again, cannot be managed from the centre.
What we can and should do from the centre is to set broad expectations for the NHS. In the national outcomes framework published in December, my right honourable friend the Secretary of State for Health made clear that we would hold the NHS to account against five broad health outcomes: reducing premature mortality; improving the quality of life of people with long-term conditions; helping people to recover quickly from episodes of illness; improving their overall experience of healthcare services—
Earl Howe
My Lords, the last of the five health outcomes that I was listing is delivering safe care. Within these five domains we have signalled a number of major improvement areas where evidence suggests the need to improve current performance in the NHS. The national commissioning board will support the NHS in achieving these improvements in various ways, through setting tariffs and other financial incentives, such as commissioning guidance and setting a lower level commissioning outcomes framework against which local commissioners will be held to account. But below this level, it will be for local commissioning consortia to determine exactly which service improvements they need to prioritise to best improve the health outcomes for their populations. They will, of course, be working within health and well-being strategies agreed with local government partners on the basis of a joint strategic needs assessment. They will be accountable to the local HealthWatch and nationally to the commissioning board for the outcomes they achieve.
I turn to the specific suggestions of the noble Lord, Lord Wills. The first of his suggestions was that we should add blindness due to giant cell arteritis to the list of never events which, if they occur in the NHS, would result in contractual penalties. The noble Lord was kind enough to alert me in advance to this suggestion and we have considered it carefully. I am very sympathetic to its underlying intention. However, I am not convinced that it would be feasible. I say that because to qualify as a never event, an incident—in this case, a failure to diagnose giant cell arteritis—must meet a number of criteria. In particular, the incident must be easily defined and identified, and it must be largely preventable if the appropriate guidance is followed. The problem is that the differential diagnosis of giant cell arteritis is not straightforward and would require a detailed case note review to establish whether a clinician was culpable for missing it in a particular instance. I am afraid that the proposed addition falls outside the criteria.
The noble Lord has also suggested that there is a need for NICE guidance. He will be pleased to hear that NICE is indeed considering, through its topic selection process, a potential short clinical guideline on the safe and effective use of steroids in the management of polymyalgia rheumatica and giant cell arteritis. As he will know, NICE has limited capacity for the development of guidance and there are many competing demands on its resources. While it would not be appropriate for me to circumvent the established process for identifying priorities, I can reassure him that the need for guidance in this area is being carefully considered. He also suggested that I refer to the issues of giant cell arteritis in a landmark speech. I fear that he may have somewhat exaggerated the impact that a few words of mine are likely to have on the knowledge and skills of thousands of GPs across the country, but I am always willing to take up suggestions of this kind, where possible, and if I can give honourable mention to this specific condition in a speech I will certainly endeavour to do so.
Finally, the noble Lord suggested that we should use one of the Department of Health’s regular channels of communication with the NHS to raise the profile of these two conditions—perhaps via the regular bulletin to GPs and practice staff. The department has a variety of means for communicating directly with NHS professionals. I am happy to consider that idea. In general, the modes of communication tend to be used mainly for the most urgent or significant public health messages, and it would not be appropriate for the department to seek to give advice on clinical issues for NICE or the various professional organisations. However, it would be possible in theory to use the GP bulletin to draw attention to professional guidance in this area, such as the excellent clinical guidelines developed by the British Society for Rheumatology and its partners. The department is already discussing with the society whether it would see this as a useful addition to its own means of dissemination.
We need to come back to a fundamental point. A liberated NHS should not wait for permission from Ministers to do anything. It should instead be listening directly to patients and their advocates—here, I include the noble Lord among the champions of these particular groups of patients. That is what the NHS will increasingly be doing.
The noble Lord asked me—he repeated the figure several times—whether the department accepted the estimate of 3,000 people a year going blind as a result of failure to diagnose giant cell arteritis. I made informal inquiries before the debate and, although he is absolutely right in all that he said about the devastating effects of this condition, I have been unable to verify the figure of 3,000 people, and experts whom we have consulted think that the true figure is quite a bit lower than that. I would be interested in any further information that the noble Lord has on that issue, and indeed on his statements around the failure by doctors to diagnose giant cell arteritis.
My advice is that the vast majority of GPs are already aware of the serious consequences of failure to diagnose giant cell arteritis, and I have already referred to the aspects of their training relating to that. It is a relatively rare condition; the average GP might see one case every two years. Picking up the occasional case of giant cell arteritis among many less serious conditions with superficially similar symptoms is therefore not straightforward. However, I believe that the great majority of GPs are sensitive to the need to pick up this serious condition.
The noble Baroness, Lady Thornton, asked me about research. As she well knows, there is a transparent process for determining research priorities, and I am sure that the professional organisations for rheumatological conditions will be familiar with the steps that they need to take, either in relation to research funding through the MRC or indeed, as regards clinical research, through the Department of Health.
My noble friend Lord Black referred in powerful terms to the adverse effect of steroids as treatment. He may like to know, if he does not already, that the standard guidance to GPs makes it clear that any dose of steroids should be progressively reduced over a fairly short period, so it is alarming to hear the experience that he recounted. He also said that GPs should warn patients of the adverse effect of drugs. I agree absolutely that that is a fundamental responsibility for all doctors, especially if drugs have potentially severe side effects. My noble friend Lord Alderdice pointed out the need to keep a focus on temporal arteritis, which should not be muddled up with polymyalgia rheumatica. That is clearly an issue for the professions, although he makes a valuable point. I undertake to draw his suggestions to the attention of the Royal College of General Practitioners.
My noble friend Lady Brinton suggested applying NICE rheumatoid arthritis guidelines to polymyalgia rheumatica. As many of the issues are the same I would be reluctant to tell NICE how to do its job. It is perhaps better to await the outcome of the topic selection process, which is already looking at PMR. The noble Baroness, Lady Bakewell, who is not in her place, spoke powerfully about ageism. I agree that any form of ageism is unacceptable. It is vital that education and training for GPs should address this issue and emphasise the specific signs for these diseases that are particularly prevalent in older people.
My time is up but I shall address the final question put to me by the noble Lord, Lord Wills, who asked whether I would agree to meet him to discuss these issues further. I would, of course, be happy to do so.