Thursday, March 20, 2008

"Shadows in Wonderland"

I have been an avid reader for as long as I can remember, and even my day job, which involves trawling through articles, reports and media releases, many of them rather poorly written, has not killed my enthusiasm.

On the other hand, I probably wouldn't pick up a book about serious illness and hospitals if it hadn't come my way for review - but having started reading it, I found that I couldn't stop.

"Shadows in Wonderland" is written by Colin Ludlow and published by Hammersmith Press. It is his account of how he was found to be suffering from bowel cancer, his treatment at London's Royal Free Hospital, and how it all went terribly wrong. At the same time, it is a thoughtful analysis of the state of the health service in this country, how far apart are our expectations and the reality.

Colin Ludlow was a television producer before his illness, and his acute visual sense brings the hospital environment alive, in all its grimness. He makes the point, which had not occurred to me before, that our expectations of hospital are largely shaped by TV dramas, which condition us to expect a lot more action - and definite answers - than real-life medical treatment generally delivers.

His own experience, which he relates honestly and without self pity, is that medical interventions bring consequences, which may well be much worse than the patient imagines when starting their treatment. If we understood completely ahead of time, perhaps we would be much more reluctant collaborators in the process. So his initial surgery to remove a tumour in the bowel - a routine, albeit fairly major intervention - is followed by severe internal haemorrhaging, a dose of MRSA, and months of drip feeding, which sets off an unsurprising series of problems with his digestive system.

In reading this book, I learned that there is a word for illnesses caused by medics - iatrogenic - and also why it is necessary. The hospital environment itself, dreary, confusing and inadequately provided with simple facilities, such as comfortable waiting areas and natural light, is shown to be an obstacle to recovery. It is telling that the first time the writer finds himself in a hospital building which is bright, welcoming and restful, he realises that he is in a hospice wing for the terminally ill: you have to be dying before the NHS treats you like a human being.

"Shadows in Wonderland" is a compelling read, whether you are a healthcare professional or a "consumer" of the increasingly business-oriented NHS services. It clearly illustrates the fact that patients are more then just a set of medical conditions, and hospitals should be more than just a collection of facilities. Until we recognise this at the deepest level, treating the whole person in an environment that makes a positive contribution to wellness, the NHS is not likely to deliver the sort of results that we should aspire to as an affluent society in the 21st century.

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Thursday, September 6, 2007

World Alzheimer's Day - 21st September

As we approach World Alzheimer's Day, on the 21st September, it is sobering to think that dementia is now second only to heart disease as a cause of death in Great Britain. And yet £5.5 million is spent on Alzheimer's research in a year, compared to the £188 million spent annually on cancer - now nudged into third place in the league of killer diseases.

An estimated 800,000 people in Britain are currently suffering from dementia - and will eventually be killed by it. This is the illness that we most fear developing as we grow older, and yet NICE has decided that sufferers in the early stages of dementia should not receive treatments costing £2.50 a day which can slow down the development of symptoms. This decision was recently upheld by a judicial review, even though the drugs in question are widely available to sufferers in other parts of Europe.

Six million people in Britain currently act as informal carers for friends or relatives who are unable to live independently without support. Demographic changes are bound to have an impact, as longer lifespans bring a steady increase in the number of people suffering from age-related conditions such as Alzheimer's.

There are no cures, and so far, few effective treatments, a situation that can only improve slowly, if at all, while dementia remains the cinderella branch of medical research.

At the same time, there is a big question mark over the standard of care offered to sufferers. A survey last month suggested that nearly 60 percent of nurses would not report abuse of an elderly patient or care home resident, through fear of making an incorrect accusation or of reprisals. The same survey found that more than 10 percent of the nurses would not want one of their own relatives to be cared for in the institution where they work.

No wonder fear of finding ourselves increasingly frail and helpless as we get older is so prevalent!

So what can we do? First of all, on a personal level, we can make it less likely that we will develop dementia. Eating a healthy diet, high in fruit and vegetables and low in saturated fats, is a first step, along with giving up smoking and drinking alcohol moderately. There is good evidence that remaining physically active helps, as well as exercising mental faculties and maintaining social activities.

More money for research will depend on making dementia more compelling as a cause. Goodness knows, that should not be hard, given the statistics, but it is still the case that heart disease and cancer are the automatic choices of many when deciding where donations should be made. And as for the NHS - one articulate, high-profile cancer victim seems better able to influence spending decisions than an army of carers and dementia sufferers who tend to remain largely invisible.

We can make it clear to the government that more money needs to be spent on dementia care by supporting the campaigning organizations such as the Alzheimer's Society and Alzheimer Europe.

Politicians probably don't need reminding that older people are the most consistent voters: the party which pledges adequate resources to deal with a condition affecting one in 14 of the over-65s, one in six of the over-80s, is likely to see the benefits in the ballot box.

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