Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Baroness Bakewell Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Bakewell]

My Lords, there was a tale told when I was first an advertising copywriter of a beggar sitting beside the road with an empty hat at his feet and a placard that read, “I am blind. Please help”. An advertising man took the placard and amended the message to, “It is spring. I am blind. Please help”. According to legend, the hat was soon filling with coins. It is spring: please help.

I support my noble friend’s idea that there needs to be much greater awareness of giant cell arteritis in the community and among GPs. I do not have medical expertise, alas, and I am grateful not to have had the tragic experience of the noble Lord, Lord Black, with the death of his mother.

The added words were meant to bring home to all those who passed by just how terrible the affliction of blindness is. It is not only the buds on trees and the dancing daffodils that the blind cannot see—they cannot see the faces of those they love; they cannot easily move around the world, crossing roads, using the tube; in their own homes they cannot trace the multitude of things mislaid daily in life, they cannot read, watch television, cook or look out for domestic hazards such as gas taps left on and rugs awry. The sum total of all such difficulties is a life vastly curtailed from a life lived with full sight. That, as we have heard from the noble Lord, Lord Wills, is the predicated outcome for some 3,000 patients a year who suffer giant cell arteritis. The examples I have given were among the main problems that arise for older women. I understand that women over 50 are particularly vulnerable to giant cell arteritis.

In supporting my noble friend in urging the Government to take action, I want to describe a confluence of social circumstances that converge on the group most at risk from the threat of blindness. First, they are for the most part older patients. It is generally recognised that people of an older generation are often more tentative in their relationship with their GPs than younger, more assertive, generations. Older people turn up and describe their symptoms and, all too often, get from their doctors a response that amounts to little more than, “Well, what can you expect at your age?” It is the way in which society colludes to groom older people to expect their lives to be winding down. We do it far too often, far too early, and often with far too little medical authority. It is an expensive and depressing form of ageism, somehow implying to older patients that their aches and pains are of less significance than they were when they were younger.

I am careful to say “implying” because no doctor would articulate such a thought outright, but in the mood and way older patients are often treated, the “What can you expect at your age?” mentality can discourage them from pressing more insistently for the medical treatment they need and which would avoid their symptoms developing further. Nowhere is this more evidently the case than with giant cell arteritis.

The second circumstance that increases the chances that giant cell arteritis could be overlooked is that the symptoms are so humdrum: headaches, sudden onset headaches, headaches over the temples; loss of appetite, weight loss, depression, tiredness. All these symptoms crop up at every age but are more easily set aside when they happen to older people. What is more, our culture has come to expect the old to be complaining. We made a comedy television hero of Victor Meldrew, and we watch and laugh along with everyone at successive television series based on the notion of “grumpy old”. The old are seen in these images as intrinsically irritable and complaining. It may just be television comedy, lightly meant and not to be taken too seriously, but such regular and amusing stereotypes colour our assumptions, sometimes to a dangerous degree. A patient presenting with a headache might just be one of them, but their complaint might be serious enough to need instant treatment and its neglect could, as we have heard, lead to total blindness that was totally avoidable.

A third consideration, related to all these, is that there is no time to be lost. With immediate diagnosis and treatment with high-dose steroids, and without waiting for a specialist report, the risk of blindness can be averted. Yet this is not how GPs go about their business; it is common practice to listen, weigh up symptoms and then recommend a first-stage range of treatments. In the case of giant cell arteritis, this will be damaging delay. When someone, especially an older person, goes blind, it is not only the individual who is afflicted. The social consequences in the life and care of such a person have a major impact, too, on the lives of their family, on those who have to cope with them, in where and how they live and in planning the social support for their rest of their lives.

It is becoming a truism of our ageing society that one of the most desirable patterns of living longer should be staying healthy for longer—desirable not only individually across a generation but in major financial savings to the state. Already, the system of social care for the old is woefully inadequate, leaving people isolated and neglected because the service is not fit for purpose. My noble friend Lord Wills has already detailed the further financial cost of 3,000 new patients each year suffering from acute blindness. I can suggest only the personal reality of those costs: already-stretched care workers with lists of visits to be made daily rushing in and out of people’s homes, dumping unappetising food on their clients and offering them cursory hygiene and little in the way of friendship. Sometimes an older person may have several different carers coming and going, as the job turnover is high and its wages low. I do not describe such social care to condemn the carers; the system forces such behaviour upon them.

Imagine how much more distressing and isolating it would be to receive such care if you were blind. That level of human misery is avoidable. If the Government take steps now strenuously to urge awareness of giant cell arteritis upon the medical profession, the blight can be averted. We know, as my noble friend has indicated, that raised awareness of symptoms among GPs already reduces the risk of damage caused by strokes. The gap between where we are now and the prospect of saving 3,000 people a year from going blind is a little one. It can be bridged, simply and soon. To do it is within our reach. It is spring.