Living Without HepC

Wow – and today I have learned even more about this film and why I don’t really like it very much.

I have just watched the whole film made by Jonathan Gems on HepC – whose preview I referred to in yesterday’s comments. Although the film makes many apt and accurate points about the state of our government’s response to HepC, overall I found it a negative and alarmist piece of work.

It is true the UK government’s response to Hepatitis C has been slow, short on direction and woefully inadequate on planning. It is likely that that the Department of Health doesn’t want to face the possibility that Hepatitis C is a costly and wide-spread epidemic. I wouldn’t disagree with Mr Gem’s analysis on that front. Hepatitis C is a horrible disease that needs to be taken seriously not swept under the carpet.

I would disagree with his judgement on using the cinematic technique of bombarding the DoH with letters. As none of the replies to his letters could be filmed for legal reasons the whole thing bordered on just haranguing. And I ended up thinking that was his style on the whole issue of Hepatitis C really.

It is apparent that Mr Gems has had a series of very unpleasant experiences with Hepatitis C. I am guessing all of us who have had it would say the same. And, yes, there is a value in sharing one’s experience – however, Mr Gems forgets to tell his viewers that it is only his experience not the general rule.

He spoke of having a liver biopsy, for example. My experience of having a liver biopsy was not pleasant but very different than his – and at the same hospital I might add. I’m uncomfortable he has left viewers with the impression it is so brutal it causes “out of body” shock, so painful it requires more than paracetamol and evokes indifference from staff who left him to suffer for 6 hours. Actually patients are told in advance they will be kept for 6 hours under observation for complications. The needle I had was not particularly painful and I wasn’t left to suffer. I was checked regularly by nursing staff who gave me plenty of sympathy and paracetamol for my pains. As I’ve said, not a pleasant experience but I think Mr Gem’s tale will clearly frighten someone off what can be a necessary and useful procedure in assessing the state of one’s health.

He is also contradictory in telling his own story. At one point he says he told a doctor he didn’t know how he got HepC, then later rather factually wrote he got it through gum surgery in 1980’s.

Time and again Mr Gem’s own experiences are generalised to represent the situation for everyone with Hepatitis C.

I feel very strongly that if any of us decides to publicly help educate others about this virus – particularly others who also have it, that we have a responsibility to present a fair representation of the situation. Not just our gripes about the way we see things. “No research being carried out on HepC”. “No palliative care for HepC”. “HepC causes brain haemorrhages” (that robbed us of Anita Roddick). By the time it is diagnosed HepC has caused “organ damage – including brain damage”. I don’t believe these statements are factually true but I will acknowledge that is only my view or belief. Mr Gems presents all these as facts. For the general public and newly diagnosed to absorb and worry over. As if Hepc isn’t frightening enough without giving it a further negative spin.

It is an interesting perspective to state that those most likely to get infected by Hepatitis C are surgeons, dentists, paramedics, nurses and doctors (and later in the film, firefighters and manicurists are added to the list). However to say that any health professionals who test positive are automatically fired, so therefore they keep quiet and hence the disease spreads is a somewhat distorted logic. And it is not factually true that medical staff are fired from their jobs. Through my experience of this blog I have been in contact with dozens of medical and clinical staff who retain their careers despite their HepC status. Yes, they no longer work in vulnerable roles but they still work.

Yesterday I said I learned a few new things about Hepatitis C. Yes, that’s true. I didn’t know it was so different from Hepatitis A & B. I didn’t know it is a nanovirus. I also didn’t know that 38 million people in China carry the disease. So this film can add something to people’s knowledge about the disease.

However, I am struck how much personal anger drives the energy and perspective on display here. And drives the very demanding absolute solution that there should be mandatory testing of the whole nation now before it’s too late.

There are other issues I could comment on here but no doubt you are becoming as weary of hearing about this film as I am writing about it. One question I was left with though – why does Dr Oliver Thatcher not have a shirt on as he outlines the news about the various hepatitis’ ?

This entry was posted on Monday, March 9th, 2009 at 7:22 pm and is filed under Journal. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.