- Smart Healthcare, Wednesday 21 October 2009 09.00 BST
Today's patients have one great advantage over our predecessors: the internet. I am not talking about official NHS websites, worthy though they are, but patients' blogs. I started using them back in February after my operation, when I had an irritating build-up of fluid underneath the wound, which had to be aspirated every five days at 'Fastrack Hospital', the specialist hospital where I am being treated.
The doctors were rather vague about how long this uncomfortable condition could last. All the official guff on the condition made it clear that the medical profession had no answers on why it happened or which patients were liable to get it. I found studies of it done in Hong Kong, Warsaw, and of all places, Teheran, but they were contradictory and clearly had found no pattern to the occurrence. The only thing they did emphasise was that the surgeons did not cause it. But, thought I, in the immortal words of Mandy Rice-Davies, "they would say that, wouldn't they".
I asked one of the doctors treating me why there were no UK studies of the condition. He answered cheerfully that the occurrences were so random, that no one in the UK was prepared to waste their time or precious budget on research which would probably be inconclusive. This was at least honest, but not very reassuring!
So, I turned to the blogs, and learnt a lot about how patients coped with the condition. Some indeed had suffered from it for a year or more, and were in some distress. Like me, they were somewhat annoyed with the medics for not coming up with a cure. But I did notice that most of the bloggers stopped blogging about this after a spell. So, I could assume that the condition had gone away. I felt more reassured by the blogs than by the doctors that my discomfort was temporary. Indeed, for me, it stopped of its own accord after about two months.
Over the weekend, I checked out some other medical blogs. One in particular caught my eye, about an aspect of my own long-term condition. The bloggers have all become quite expert on their diseases, and share that information very clearly, and perhaps more importantly, give each other moral support. About 10 postings were made last weekend between a group of about five patients and a nurse. This breadth of instant support is something utterly new, and could make up for many of the deficiencies of the mainstream NHS.
I found the interactions particularly interesting, because some of the patients concerned are being treated at Fastrack and other hospitals near me. Some were open about misdiagnoses and other shortcomings in the past by some of these hospitals and doctors – never Fastrack, I am glad to report. One particular local hospital came in for a lot of stick, confirming horror stories I heard from fellow-inmates of my ward during my stays in hospital earlier this year. These blogs strengthened my resolve never to allow myself to be admitted there, even if I am run over by a bus outside its gates!
I believe that these patient blogs, particularly by patients with life-threatening diseases, are deadly serious and give a straighter view of bad practice in the NHS than the dedicated websites, official or unofficial, which review hospitals and GPs. Furthermore, BMA spokespersons cannot put up their habitual whinge that doctors' careers can be ruined by a single anonymous malicious posting on what they call grassonmygp.com sites.
These bloggers are fighting for their lives, and they tell it how it is. The BMA, GMC et al should scan them regularly and pay attention. They might even learn what patients really think.
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