Please note: As with all posts on my 50shadesofsun.com blog, all opinions are mine. Usually, I leave that unsaid but on this occasion I want it clearly understood that I am speaking for myself – not for any Facebook group nor anyone else.
How dare the Barts MS blog criticise the journalistic integrity of the BBC Panorama team or any other news team, for that matter, over how they treated the HSCT treatment at Sheffield?
And then to ask, albeit with tongue firmly in cheek, “Should we create the equivalent of the Ig-Nobel prize for irresponsible journalism?” is downright insulting.
Just what do the writers of the Bart blog post ClinicSpeak: reflections on HSCT after the fallout of the BBC Panorama programme know about journalism? Not a lot in my opinion – as someone who is a journalist by profession.
As far as the other points made in the blog are concerned, I must point out that I have absolutely no medical training – but I do have MS, epilepsy and a cardiac condition.
There does not seem to be anything new in the blog; they have said it all before and the fact that Panorama did not go into the downsides of HSCT is irrelevant. It was not scientific paper, nor was it a programme about the pros and cons of the process – it was a news story about the treatment and progress of four patients who had chosen to have it. And that is what journalism is all about. It told the story in an accurate and responsible manner – it is just that those at Barts would have preferred a different story altogether.
What’s more, if they want to compare HSCT with drugs, that discussion needs to include the dangers of those drugs too, of which there are plenty.
As someone who lives with MS, I think the Barts blog piece, posted on February 8, was highly patronising in that the writers seem to assume that patients aren’t interested in the long term risks, just the immediate ones. I have not had HCST, nor applied for it, but I think that if it works for some, then it is good. There are risks but these, both short and long-term, are discussed with each patient before he or she is accepted for treatment.
As far as the benefits are concerned, the people at Barts are also patronising if they think patients with extensive MS damage expect it to be reversed by HSCT, rather than progression halted with no other gains. Stopping the progression is good enough. Those extra gains are really only achieved with early MS – and patients know that!
And, while I am about it, what is it with neurologists’ attitudes? They seem to think that they should have the right to decide what is best for every individual. They think, and I am aware that this is a sweeping generalisation, that they know best and pay little if any attention to the views of patients themselves. They are the professionals and don’t need to considering patients’ views about their own treatment – well, that is exactly what they should do.
We are more than MS statistics, we are more than patients. We are PEOPLE, with our own views and opinions – and our own rights – about what happens to us.
Gwen Higgs – an update
In a comment received after my blog on Monday, one reader asked if there would be a part 3 about what Gwen’s neurologist thought about the HSCT she’d had in Moscow. So, I asked Gwen.
She said: “That would be an extremely short blog entry. I have only seen my neuro once since I came back from Russia eighteen months ago. That was a routine appointment which happened to fall a couple of months after I arrived home, so I was still bald. She showed absolutely no interest whatsoever.”