Don't get mesothelioma in England

Excerpts from a doctor who was recently diagnosed as having it. It is cancer of the lungs, most usually caused by high levels of asbestos fibre inhalation

Mesothelioma is a rare form of cancer and, until recently, there was little to offer in the way of treatment. Treatments are available now, but as ever in parts of the UK the drug that is used as a frontline treatment is not available on the NHS.

This is because for each year of (quality-adjusted) life it brings it costs too much, more than 30,000 pounds. Diagnosed with a mesothelioma in Scotland, Australia and many European countries, you will receive the drug - but not in England. Nice (which should perhaps stand for the National Institute for Curtailing Expenditure rather than the National Institute for Clinical Excellence) has made a ruling on cost-effectiveness grounds that the only drug that has been shown to have effectiveness, albeit of a limited nature, will not be available.

There is nothing intrinsically wrong with limiting treatment on cost grounds, but we need to be honest and open that that is what we are doing. It might seem reasonable to limit how much might be spent but I am not at death's door yet, nor are many mesothelioma sufferers. Politicians will often come out with the old chestnut, "you cannot put a price on life", well, they do put a price on it. In my case, a year is not worth spending more than 30,000.

Patricia Hewitt, my boss, has said: "A modern health and social care system has to be completely focused on the needs of its users," and "We are trying to find out what patients need, rather than what it suits us to provide." There are many sufferers from mesothelioma out there, Mrs Hewitt, who have justifiable healthcare needs and who will not be provided with drugs which may prolong their lives because it suits you not to provide it on cost grounds. I do not think they feel completely focused on. Mind you, 30,000 is a lot of money to waste on a very sick person. You could, for example, employ for nearly a year a "senior parenting practitioner" in the London borough of Tower Hamlets.

I have gone from highly strung (for no good reason, now I think of it) consultant, father and husband into highly strung (now with a good reason) patient, father and husband. I can string a few words together when the fatigue, nausea and sleep deprivation are not so bad. I have not suffered badly from the chemo-therapy, but for some it must be like seasickness. There is a period when you think you are going to die followed by a period when you wish you were.

It is good for medics to be on the other side, you appreciate the good and spot the bad. I have liked the internet as a source of medical information for many years. It empowers patients to ask questions that encourage doctors to explain more fully. However, it cannot answer all the questions. You may not discover all that you do not know and sadly, some of the stuff you find may not be helpful.

Being a pain specialist, I looked at the pain management section of a leading university unit dealing with mesothelioma. Big mistake - I know pain is a major problem in mesothelioma and I know that resources allocated to it are inadequate. What I was not prepared for was facing the issue from the other side. By the end of my reading, I felt like looking for the weblink that would allow me for $39.99 - a special offer - to have a loaded 9mm Browning delivered to my door.

Reading one paper I felt angry that an expert had been blunt to the point of callousness. We need to care for patients, as well as treat them. Caring involves giving information in a sensitive fashion, not "click on here" to find out just how bad it can get. My esteemed colleague who, at the beginning of a presentation on mesothelioma had a slide which showed a photograph of the "shit creek paddle shop", should realise that it is accessible from the internet.

Source

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For greatest efficiency, lowest cost and maximum choice, ALL hospitals and health insurance schemes should be privately owned and run -- with government-paid vouchers for the very poor and minimal regulation. Both Australia and Sweden have large private sector health systems with government reimbursement for privately-provided services so can a purely private system with some level of government reimbursement or insurance for the poor be so hard to do?

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