Tamiflood, or let's be seen to be doing something, even if it's the wrong thing

A couple of weeks ago I had occasion to phone the National Swine Flu helpline. My son, who is on immune suppressant drug therapy, had developed a sore throat and wasn't feeling well, and I was frankly worried about him.

Unfortunately, one of the side effects of the immune suppressant therapy is that he may not spike a high temperature even when he has an infection. The doctor he used to see at Great Ormond Street was a lot more emphatic about this than his current team at UCH: he said it would be a medical emergency should he have a high temperature while on the therapy, the current set, not so much, as far as I can gather from their email.

Anyway, I got through to an adviser on the helpline, and the first question he asked, was did he have a temperature? I rehearsed my argument that this may not be a good indicator for my son, given his immune suppressant therapy, but I got in reply a variation on "the computer says NO" as they were using high temperature as their main sorter symptom: if you have a high temperature you move on to the next level of questions, but according to the system, if you don't have a temperature, you can't have flu.

The end result was that I was advised to phone my GP, the duty doctor at the GP said that the guidelines were clear, he had to be seen by a GP in order to be diagnosed, and so I had to take him along. The GP we saw was bemused as to why I was there, and diagnosed a throat infection.

In the meantime, I looked up Tamiflu and its pros and cons. I found it pretty hard to find any good evidence about it, but by the time I had finished my researches a few things were clear. It looked as though there were some pretty severe side effects for quite a lot of the people who take it; it may only reduce the length of the symptoms by a day; flu is becoming resistant to this therapy; there is little good evidence that it is effective in reducing complications in vulnerable people.

It is hard for me, as a layperson, to know what sort of risks I am taking with my son's health if I refuse a treatment, but one of the most shocking discoveries was that Tamiflu had been implicated in the suicide of around 60 teenagers in Japan - something which had led the Japanese to advise that it should not be prescribed for children aged 10-19 (my son is 19). There was an argument that depression was a part of the normal symptom of flu, and that may be so, but I think the post-flu depression and throwing yourself off the nearest tall building are different by such a magnitude that it is obvious there may be something sinister about the action of the drug. I, however, don't know what the normal suicide rate would be for the large number of people prescribed Tamiflu in Japan. Good evidence of the drug's effectiveness OR its dangers seem to be quite hard to find online.

A couple of days ago, the Guardian reported that the government's own advisers had advised that Tamiflu should not be prescribed for Swine flu. All the indications were that it was a mild illness for the vast majority of people, and their suggestion was that people should be tld to take paracetamol until it went away again.

The government, however, decided that they could not tell this to people, most especially since they were sitting on a monumental pile of Tamiflu in case of epidemic. The trouble is, the pile was really for a variant on bird flu, where the reported death rate was 50% and the illness severe, where any reduction in complications and prophylactic effct for family members might have been worth the risk of side effects.

So, the likelihood is that by flooding the country with Tamiflu they have potentially screwed its effectiveness for a more serious epidemic, and for no demonstrable good effect. Like many other people, I assumed this was a wonder drug which would provide good protection from the serious complications, particularly for vulnerable people like my son... but it seems I was misled in this.

It's hard not to overreact and to overestimate the dangers of swine flu as an individual: the message of the papers in the last few weeks seems to have been "It's a mild illness... BUT YOU MAY DIE!" I know it is probably the case that many hundreds of people die every year from Flu and I simply don't know about it. Do you know anyone who has died of flu? In my case, not until the swine flu hit the country, and a six year old locally got a sore throat one day and was dead two days later. That's scary, and of course makes people worry that they - or their children - are next. It's no good telling them hundreds die every year from flu if they haven't ever heard of anyone dying from it until swine flu hit here.

But the government are paid to take objective decisions for us as a community, and not to panic and throw a drug, which may be rendered useless as a treatment, at us if that's pointless and unnecessary. I feel quite angry that they don't provide us with good information to enable us to participate in decisions about our health, for example, some guidance over how the flu progresses if you are that one in a million - currently - person who may die from it, and what symptoms it is appropriate to panic over.

I've always been quite suspicious about the government's ability to make good public health decisions, and this hasn't really helped.