Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Lord Wills Excerpts

Wednesday 30th March 2011 Grand Committee

Asked By

[Lord Wills]

To ask Her Majesty’s Government what steps they are taking to encourage early diagnosis of polymyalgia rheumatica and giant cell arteritis and to ensure appropriate treatment.

[Lord Wills]

My Lords, the Government have said that their approach to the NHS is founded on the principle of doing more for less. I have asked for this debate today to suggest a way in which the Government might do this by preventing thousands of people in this country from going needlessly blind every year. Giant cell arteritis is the most common form of vasculitis: an inflammatory disease of blood vessels, most commonly of the arteries in the head. It is, in effect, a stroke in the eye. If diagnosed in time, it can be easily and cheaply treated with steroids; untreated, it leads to blindness in 25 per cent of cases. It is one of the most common causes of acute blindness in this country.

It has been estimated that around 3,000 people a year go blind needlessly as a result of giant cell arteritis, because their doctors failed to diagnose their condition in time and provide sufficiently rapid treatment. That is a tragedy for those afflicted and their families, so why is it happening? Why are thousands of these avoidable tragedies happening every year? The symptoms are everyday: headaches associated with scalp pain and pain in the jaw or tongue. It is also common to see systemic low-grade fever, weight loss, loss of appetite, depression and tiredness. Once symptoms present, an early temporal artery biopsy or ultrasound can effectively confirm a diagnosis of giant cell arteritis but urgent treatment needs to be started as soon as possible to prevent the risk of blindness.

However, far too often GPs miss the symptoms. This is often an affliction of older people and the symptoms are too commonly categorised as merely the aches and pains of ageing. Up to 3,000 people a year go blind as a result. Moreover, best clinical practice suggests that patients with suspected giant cell arteritis should be started immediately on high-dose steroids, not wait for specialist review. The precautionary approach is not usual practice for many general practitioners, not least because it is often not appropriate for other complaints. Far too often, patients are prescribed the wrong treatment and too late.

The problem arises from a combination of symptoms that, taken in isolation, could indicate a wide range of complaints, serious and less serious. There is the need for speed in treatment, which is required for few other complaints in the same way, and a precautionary approach which is not indicated in the same way for many other treatments. Yet there are such significant, differentiating characteristics about the symptoms so that giant cell arteritis ought to be easy to diagnose as long as GPs are sensitised to them. Headaches are common but sudden onset headaches and headaches over the temples are less common. Those categories of headache are key indicators for giant cell arteritis. Even in the minority of cases where headaches are not present, there will be other constitutional symptoms such as weight loss and loss of appetite. Jaw and tongue pain are red flag warnings. Visual disturbances such as double or blurred vision, or the transient loss of vision, are other powerful indicators for immediate treatment.

Dedicated clinicians and support groups have been working tirelessly to reduce the number of these avoidable incidents of blindness by raising awareness among clinicians. The British Society for Rheumatology, British Health Professionals in Rheumatology and the Royal College of Physicians produced guidelines for the management of giant cell arteritis 18 months ago, but the persistence of problems with diagnosis and appropriate treatment suggests that they need support if they are to make significant progress. I am afraid that they do not appear to be getting that.

--- Later in debate ---

[Lord Wills]

My Lords, before we were called to do our democratic duty, I was saying that the persistence of problems for the diagnosis and the treatment of giant cell arteritis suggests that all the good work being done by clinicians’ bodies needs support if they are to be able to make significant progress, and they do not appear to be getting it. I asked the Government in a Written Question last October what steps they had taken to promote among general practitioners’ knowledge and understanding of those guidelines. The reply stated:

“All healthcare professionals are accountable, through their professional regulator, for keeping up to date with the professional guidance relevant to their area of clinical practice”.—[Official Report, 6/10/10; col. WA21.]

In other words, it was nothing to do with them.

Of course, government departments should be wary of interfering with the professional judgments of clinicians, but when there is such an obvious and persistent problem, government must not simply stand aside. Apart from all the human misery caused by this unnecessary blindness, it costs the NHS millions of pounds a year that could easily be saved. I asked the Government, again in October last year, what estimate they had made of the costs of such unnecessary blindness. The reply stated:

“The department has made no estimate of the cost to the National Health Service of treating vision loss in those whose giant cell arteritis was not diagnosed early”.—[Official Report, 6/10/10; col. WA20.]

I am surprised. Three thousand people a year are going blind unnecessarily and the department has not made any financial analysis of the problems.

Still, I shall try to help. The costs will include clinical treatment and social care, both for those afflicted and those who care for them or who were cared for by them. Some estimates have suggested that the annual cost to the Exchequer of blindness for an individual could exceed £20,000 a year. It could be considerably more than that, but let us take that figure. The cost of those 3,000 people going blind every year unnecessarily could run to around £60 million a year. In the absence of any calculation by the department, this is the figure that I am afraid we have to work with.

Of course, this cost accumulates year on year. Over the five-year period for which this Government are legislating for themselves to be in power, the total cost of such unnecessary blindness could come to nearly £1 billion. If we offset against that the cost of steroids—let us say £100 a year for two years for each patient—it still leaves a net cost to the taxpayer of around £900 million. Unless the Government act to help stop such unnecessary blindness, they run the risk of forcing taxpayers to go on paying costs running cumulatively into billions of pounds—not millions or hundreds of millions—while inflicting incalculable misery on those sufferers, mostly pensioners, who are already at the most vulnerable stage of their adult lives. I emphasise that this does not mean the loss of vision alone, although that is tragic enough. It also means, all too often, the loss of independence, with elderly people who had been able to live in their own homes being forced to go into residential care. I hope that the Minister will understand why I am today pleading with him to do more. I have four suggestions.

The Department of Health is conducting a consultation to expand the list of “never events”. This is a welcome initiative and I congratulate the Government on taking it forward. Never events are defined as,

“serious, largely preventable patient safety incidents that should not occur if the available preventative measures have been implemented by healthcare providers”.

It is hard to imagine a better fit for this definition than blindness in giant cell arteritis. Causing blindness must qualify as “serious”; it is certainly “largely preventable”; and it clearly would not occur if the available preventive measures, early diagnosis and rapid treatment with steroids, had been “implemented by healthcare providers”. I hope that the Minister can say now that his department will seriously consider making blindness from giant cell arteritis a never event. I should be grateful also if he could confirm to me today that if, when it has reached its conclusions after the consultation, his department decides not to make giant cell arteritis blindness a never event, he will write to me explaining why it has rejected this opportunity to prevent thousands of individual tragedies every year and to save the taxpayer millions of pounds.

My second request to the Minister is to ask NICE to make an appraisal of giant cell arteritis services in order to produce guidelines. As he is aware, NICE guidelines are mandatory for commissioning groups and acute trusts and, coupled with appropriate awareness programmes, this could transform consciousness of this illness and radically improve outcomes for those afflicted by it.

Thirdly, can the Minister please raise the profile of this issue by discussing it in a landmark speech? He has earned his reputation in your Lordships’ House as an unusually thoughtful and conscientious Minister, and such a speech by him would only burnish that reputation.

Finally, can the Minister please communicate directly with GPs on the importance of early diagnosis of this disease through one or more of the mechanisms through which the Department of Health communicates to GPs, whether it is a “Dear colleague” letter, a Chief Medical Officer update or letter, or regular mention in the GP and practice team bulletins?

What impact might such consciousness-raising measures have? The best evidence comes from the treatment of strokes. In 2009, the Department of Health launched the Act FAST campaign to boost awareness of strokes, promoting a simple test to recognise the signs of strokes and act quickly. As the Minister will be aware, swift diagnosis and treatment can limit damage in the brain and increase the chances of survival. The Department of Health committed to a three-year £100 million stroke strategy in England. When I asked in a Written Question last year what assessment the Government had made of the impact of the campaign, the Minister said that it,

“successfully achieved a rapid change in behaviour. Within a year, an estimated 9,864 more people reached hospital faster, 642 of whom were saved from death or serious disability by receiving thrombolysis. The evidence demonstrated that the campaign achieved a payback of £3.16 for every £1 spent”.—[Official Report, 9/12/10; col. WA 86.]

If the previous Government could take such impressive action on strokes, and if this Government can so commendably carry on that good work, I hope they can now take similar action over strokes in the eye. We now know from Act FAST that such consciousness-raising campaigns work. Such an approach to giant cell arteritis will save thousands of people going blind and could save the taxpayer up to £1 billion by the time of the next election. There really can be no possible excuse for the continuing inertia, and I look forward to hearing what commitments to improvement the Minister can make today.

In conclusion, I should be grateful if the Minister would agree to meet me, concerned professionals and representative patient groups to discuss what further measures might be possible.