Not exactly medical journalism

Earlier this week the Panorama documentary featuring Kay Gilderdale, titled “I Helped My Daughter Die”, won the Medical Journalists’ Association’s “best broadcast TV” award at their Winter Awards 2011 (the MJA don’t actually announce the winners of their own awards, which seems a bit odd), which were presented at the Wellcome Collection galleries in Euston Road, London last Wednesday. Press Gazette reports that the award actually went to Ray Tostevin, the director, but the GRACE Productions company blows its own trumpet for the award without mentioning that the prize actually went to the director individually. The programme also won the IVCA (International Visual Communications Association) Clarion Award last year in the television section.

I’ve said this before, and I’ll say it again: I don’t think this programme did the subject justice. Admittedly, there is only so much you can fit into a documentary running to just under 30 minutes, which is the BBC’s fault, not the producers’, but it was a bit short on medical details which might have given the reader a clearer picture as to why Lynn Gilderdale got to the point where she felt she had to take her own life. Some of Lynn’s complications were mentioned, as well as the fact that she was in pain (hence the morphine), but there was no reference to the recurrent medical disasters (such as the incident in 2005 where her lung was punctured and an artery nicked, causing serious internal bleeding and leaving her on life support, during a routine operation to replace a Hickman line, which as Lynn reported herself, was allowed to get that bad because the doctor would not listen when she said she could not breathe properly and was in pain) or to the abusive treatment she had received as an in-patient in 1992, which left her with a lifelong fear of doctors and hospitals. Nor did it mention how ME itself affects people, other than by causing them pain; the complications that were mentioned in Lynn, such as adrenal and ovarian failure, are unusual.

Panorama is meant to be an investigative series, and its strapline reads “the world’s longest running investigative TV show”, but this programme had no investigative content whatsoever, and there was plenty of material there. The programme did not mention that numerous lives had been ruined because doctors were at best encouraging, and at worst forcing, people with aggressive ME to exercise when the hallmark of ME is not persistent fatigue with no other identifiable cause, but the dramatic upsurge of symptoms caused by exertion, which for the less severely affected may mean running up a hill but for the more severely affected, it can simply mean getting up out of bed, travelling, talking or even listening to someone. This was a major factor in Lynn becoming as ill as she became; without it, she may have developed severe ME as her illness seemed unusually aggressive, but perhaps her experience would not have been as dire and protracted as it was. She was not the only victim; the trauma of being sectioned (by doctors who refused to believe she was physically ill) caused Sophia Mirza to suffer a dramatic relapse after her condition had improved, and there have been many other incidents. As Zoe Williams writes:

A common theme is the belief that people with M.E. would get better if they did a little bit more each week. I can’t count the number of times that I have had to explain to a professional that this does not fit my experiences. It can be heart breaking when this is held up as the effective treatment that I would so love it to be. … If I had been encouraged to listen to my body, learning from my experiences, I doubt that I would be as ill as I am. Instead, I was told to do what I knew in my heart was dangerous. It is not merely a case of insensitivity – it is a case of being advised by someone with authority, to do things that predictably make the illness worse. Yet patients expressing concern about possible long-term relapse tend to be treated as if they are over-anxious.

Williams contracted ME in 1990, aged 13; she has been bedridden most of the time since (not as extremely as Lynn Gilderdale, who was unable even to sit up without passing out, but bedridden all the same). She is the main author of the ME TIps collection and a number of articles which were published in British ME magainzes and are collected here.

By contrast, the local ITV Meridian news programme has been quite diligent in following local stories of ME sufferers, including the Gilderdales and Sophia Mirza, whose inquest in 2006 was the first in the UK to state “Chronic Fatigue Syndrome” as the cause of death, after an autopsy found clear evidence of inflammation to her spinal cord. A report broadcast after the end of Kay Gilderdale’s trial revealed that there were almost no ME specialists operating on the NHS in the region and waiting lists of more than a year (one patient actually turned up for his appointment a year early).

The BBC has, to my knowledge, broadcast one programme (a Panorama titled Sick and Tired, in 1999) about the mistreatment of young ME sufferers, and there are limits as to how much they can investigate as a lot of parents whose children are suffering now are afraid to speak out; parents have been threatened with having their children taken into care, but some families have spoken out, such as in this report in the Daily Record last October, in which a teenage girl and her parents described how doctors forced her to exercise until she literally dropped, but there are some who are willing to speak out. No attempt was made to investigate any of this in “I Helped My Daughter Die”; it focussed entirely on Lynn Gilderdale’s suicide and Kay’s role in it, with a cursory examination of the arguments for and against legalising assisted suicide, with a very clear bias in favour on the part of the presenter, Jeremy Vine (much to the distress of certain sections of the disability community).

For whatever reason, the media does not seem interested in ME even in the face of a high-profile story about someone who suffered terribly with it for years. Kay Gilderdale gave two interviews during last year’s ME Awareness Week, and both focussed on the suicide. There is a public health scandal here which is not being investigated; people like Zoe Williams and others who have been ill for years are still suffering, people are still receiving damaging wrong advice, very little research is being done and most of that is on groups of patients identified by “fatigue” who almost certainly do not all have ME. This programme was one big missed opportunity from start to finish, and it is a mystery why it got an award for medical journalism when its medical content was pretty thin. Then again, British documentaries rarely do serious investigations anymore, as TV executives think that people don’t really want to think when they watch prime-time TV after work, so Panorama is reduced to stirring people’s emotions instead.

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