We made terrible mistakes. We never put a system in place to make sure that you were told what you needed to know when you needed it.
Instead of telling you the plain unvarnished truth, in a way that might have helped you, we hid it from you. We forced you into legal confrontation when it was unnecessary, and it was certainly the last thing you needed. And above all that, we put you at terrible risk of your life, when you should have had a much better, more realistic chance. For all of that, and for the pain and grief you have suffered, we are deeply ashamed, and terribly sorry.
If anyone saw Vicky Phelan on the news last week, sending a heart-broken message of despair to our forbidding State, you realised immediately that those are the words, at the very least, that she was entitled to hear. We saw her grief as she stood outside the
High Court, and all I could think, watching the pictures, was: “Why?”
Why did she need to go to the courts? In all her suffering and fear, why did our brutal State pile a legal action on top of her? Why do we do it again and again? We do terrible wrongs to people — it seems usually women – and then we force them to risk everything by going to court. Only then, when they’re under the most unbearable pressure, do we own up, admit we made a mistake, and offer redress.
Of course the clinical director of Cervical Check had to resign, or whatever she did. But the harsh truth is that her resignation is not nearly enough. Yet again, Ireland has been faced with a challenge of accountability and ethical behaviour. Yet again, Ireland has failed. When will we ever learn?
There’s a long and ever-growing list of women in our recent history, young and not so young — women who have been abused, neglected, ill-treated, or desperately let down by our health, education, or social services. It has gone on for years.
Bridget McCole, who died as a result of contaminated blood — the day after her case was finally settled by an unforgiving State. Eileen Keegan, who lost two children in the Stardust and whose family still seek hidden truths. Louise O’Keeffe, terribly abused by her school principal, and forced to go to Europe by a pitiless State that fought her every inch of the way.
The Magdalene women, outcasts from a callous State. The mothers who lived lives of marginalisation as a result of their experiences in mother and baby homes throughout Ireland. Grace and her friends, whose case is still being investigated — and one wonders how many names will be hidden in that report when it comes. Malak Thawley, who died in Holles Street when she shouldn’t have. Savita Halappanavar, whose death has become an icon for failed public policy. And the list could be a lot longer than that.
We betray them. We let them down. We treat them as second-class citizens. We make them fight, or die. We apologise at the last minute. We pay compensation. We cover it all up in jargon and gobbledegook. Again, and again, and again.
In the course of an eight-minute interview on Morning Ireland last Friday, the clinical director of Cervical Check quoted the phrase “international best practice” five times — once every 100 seconds or so — to justify their failure to tell women previous tests were wrong.
Having listened to the interview, I was angry at the banality of the language, and astonished at the thought that international best practice would allow such vital information to be kept from women affected by it. But the interview was so full of jargon that it still didn’t explain why this had happened.
When you eventually decode it, what you find is this. Cervical Check has been operating since 2008. For most of that time, if it became aware that a previous diagnosis was wrong, they appear to have believed that “best practice” meant they should use that information to improve their systems, rather than to tell the patient — they actually advised against
patients being told. Even when they changed that approach, they changed it to one where they told the patient’s doctor, not the patient.
That’s insane and barbaric. There is no definition of best practice — or even adequate practice — that can enable such vital information to be withheld from patients who had put their trust in the system. But still Cervical Check was so certain of the correctness of its approach that it never seems to have occurred to them to have questioned the ethical basis of any of its “we know best” policies.
Now, at least, that is to be changed. Legislation will be put in place to ensure that this kind of decision-making is not voluntary, but mandatory. And we’ve been told that it will be accompanied by legislation about a duty of candour — legislation that governments have always shied away from.
But here’s the thing. Cervical Check is buried deep in a bureaucracy. It exists as a public service, even though it outsources a great deal of its work — outsourcing that appears to be done not for higher quality, but for a cheaper price. As a public service, it is part of another public service — the National Screening Service. The NSS, as it’s called, is itself part of another public service — the HSE. The HSE, as we all know, is enormous, and accountable largely to itself. It, too, is a sub-agency of another public service — the Department of Health.
If you want to find out who runs Cervical Check, or how it is accountable, you have to peel away layer after layer. It’s like trying to find the very heart of an onion. No matter how hard you look at all the published material, you can’t find a board, you can’t find a budget, you can’t find an independent Ethics Committee, you can’t find how it spends its money, you can’t find who is responsible for its strategy.
Its “owner” (if that’s the right word), the National Screening Service (NSS), last published what it laughingly called an annual report in 2010. That old annual report does at least reveal that the board of the NSS is largely made up of the senior managers of its constituent services. Not a lot of accountability there, then.
The NSS doesn’t just run Cervical Check — it is also responsible for bowel screening and Breast Check. We’re all told we have to trust these systems. The integrity of the system is what matters — not the accountability. We went through all this with the Hepatitis C scandal 25 years ago, when the default instinct was to hide the truth in order to protect the willingness of people to give and receive blood. That mistake cost hundreds of lives and more than a billion in redress. And still we’ve learned nothing.
Accountability can’t exist without independent boards, trustworthy accounts, annual reports, and an openness to questioning. Accountability demands answers to legitimate questions. Above all it demands truth, and not the culture of evasion and secrecy that our broken State hides behind.
In all her suffering and fear, why did our brutal State pile a legal action on top of her? Why do we do it again and again?... Yet again, Ireland has failed
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