Thursday 17 January 2019

Using her precious time to shine a light on the rot

The extraordinary Vicky Phelan pulled a thread and now a whole culture of no one taking responsibility is unravelling, says Brendan O'Connor

ORDEAL: Vicky and Jim Phelan leaving the Four Courts after the €2.5m settlement of their action for damages. Photo: Collins
ORDEAL: Vicky and Jim Phelan leaving the Four Courts after the €2.5m settlement of their action for damages. Photo: Collins
Brendan O'Connor

Brendan O'Connor

The country is in awe of Vicky Phelan. But that's no good to her. Neither is the €2.5m settlement this terminally-ill woman got after being dragged through the courts by the HSE and the clinic in Texas which did not spot what were, according to expert witness Professor John Shepherd, obvious abnormalities on the slide of her cervical smear. The money might buy her some more time with her children, and some of it will be there for those young children when they turn 18. But none of it is any good to them, is it? Terminal illness has a way of putting everything else in perspective.

People die of cancer all the time. And it's the saddest, most tragic thing. But the idea of unnecessarily dying of cancer, when you should have had an overwhelming chance of survival, is a very hard one to get to grips with. If the abnormalities on her original slide had been correctly spotted, Vicky should have had a 90pc chance of being cured through relatively straightforward treatment. But instead she is terminally ill, and hoping to buy a bit more time with her young children.

The rest of us can only imagine how angry you could become.

But instead Vicky chose to try and make a difference. And so she pulled at a thread. She went to the courtroom, even though, as she told Ivan Yates and Matt Cooper on The Tonight Show, "a courtroom is not the place to be when you're in my condition, with very bad back pain and you're sitting on these extremely hard seats, and you're being made to answer these very personal questions about how cervical cancer has affected you psychologically, emotionally, my marriage, my sex life". And now a whole rotten edifice threatens to unravel because of this extraordinary woman.

The big picture of what she has exposed is a monster of a health system we have built up where no one is responsible for anything, and nobody wants to be responsible for anything. As Vicky said: "I feel very aggrieved that I had to go up there and tell the world about my situation, and these people who are responsible for misdiagnosing me didn't have to get up there and do anything."

The robotic, indecipherable jargon spouted by various HSE people over the last week told its own story. No one admitting any responsibility, everyone slow to say sorry, rarely a shred of humanity or decency demonstrated. Everyone engaged in an elaborate game of arse covering. And look at the carry on behind the scenes, where Vicky's doctor and CervicalCheck appear to have argued for a year over whose responsibility it was to tell her that her initial test was misread.

Her doctor, Kevin Hickey, had a good point when he said it shouldn't come from him because he was not remotely involved in the testing or in overseeing it, and that it could heighten Vicky's anxiety to have the news come from the doctor who was caring for her. But CervicalCheck/the HSE wanted to offload it to him, telling him to use his "clinical judgment" about whether to tell her. Now it even seems as if Dr Grainne Flannelly - the clinical director of CervicalCheck who last night resigned - told Dr Hickey not to tell some women about their false negatives.

And bear in mind that the results of this now infamous audit had already been sat on for two years at this stage. It now seems that 206 of the women who went through the CervicalCheck system but got cancer should have been sent for repeat smears or a colposcopy earlier than they were. In the case of any of these women who had died, their doctors were told to say nothing but to just add that information to their notes. Right now no one seems to know how many of those 206 women have been told.

We should say in fairness the smear test is not a perfect diagnostic test. There are many possibilities for error in smear tests that do not involve malpractice. Screening is an inexact science and false negatives, and indeed false positives, do occur. Indeed, there are many medics who are deeply sceptical about the amount of screening that goes on these days. Fear of litigation can lead to a tendency to over-report positives. And further tests, which are sometimes unnecessary, can have detrimental physical effects. Notification of perceived abnormalities, which are sometimes not a symptom of anything, can be devastating for women and can have significant psychosexual consequences.

Anyone who has heard the chilling word "pre-cancerous" will know that it in itself can be a bombshell, leading to extreme worry and morbid fixations. They tell you you're lucky when they spot pre-cancerous activity. Most of us feel anything but at the time.

So we should perhaps try to keep some perspective on all this. Screening is not as cut and dried as we would like it to be. Just as we should be wary of widespread panic, we should be wary of putting all our faith in screening. Indeed, there is a conversation to be had around what truly informed consent is. Are the limitations of screening and the potential downsides fully explained to women? Or is it presented as something that it is not, an absolute guarantee against harm and against cancer?

But what Vicky Phelan has exposed is a sickness at the heart of our health system, where no one seems to be in charge, where screening is subcontracted out to people who subcontract it out again, so that the buck gets passed on and on. So that when things go wrong, the bureaucrats in the HSE are never responsible for anything, and there is always a plausible deniability, a distance created. And somehow, the ones who end up apologising for what happened in a lab in Texas are the Tanaiste and the Health Minister. And the permanent bureaucracy marches on, spouting jargon, and arguing over whose responsibility it is to tell what to whom. One thing you will find is, it's never their responsibility.

And you have to be in awe of Vicky, that she could be bothered to take the time and the energy to shine this light on a broken system, to sit in pain in that courtroom, wasting her precious, precious time, and exposing her most personal feelings at what should be a private time for her. When none of them had to get up there and do anything. Vicky clearly feels that if she gets people to start taking some responsibility for things, matters of life and death and dignity and the right of patients to be told what's going on, then it will give some small meaning to her awful situation.

And the footnote to this that tells you everything you need to know? They tried to get her to sign a non-disclosure agreement. They tried to buy her off and silence her. And she wouldn't do it.

Sunday Independent

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