The victims of contaminated blood transfusions should be supported by the State, but groups representing them must conform to standards, writes Terry Prone
NEVER mind her name, although it sticks with me as no other name from my schooldays sticks with me. To all of us, she was the girl who fainted.
I have no idea why she fainted, but every now and then she would slump to the floor and it was action stations and rescue for everybody else. Except me. I studied her with fascination, eager to learn how to do it, because the payoff was so enormous.
The sympathy was mighty. Once rescue had been effected — put her lying down, lift her legs higher than her head, and wait to reassure her upon recovery — she was swamped in a syrup of sympathy. Everybody was so sorry for her. This sorrow wasn’t based on any injury, because she had a wondrous capacity to faint without banging her head off any pointy surface. Nor was it based on any knowledge on our part of whatever ailment might be causing this syncope.
It stemmed from a general conviction that people who fainted were special. They were vulnerable, although that word was not in our lexicon at the time. They were delicate in some non-specific way. They needed extra minding.
A line of fainting role models included Elizabeth Barrett Browning, the most romantic of poets, although we didn’t know that her passing out was due more to overdoses of laudanum than to any physical ailment, she being a committed drug addict.
Because I studied the girl who fainted with fierce attention, it was quickly borne in on me that once you achieved this kind of status, you escaped many of the rigours of school. Teachers didn’t often ask her direct questions related to precisely how much of her homework she had done, and if she volunteered an answer to any question, that answer put her in line for an Oscar or at least a Bafta.
It wasn’t just the teachers who vouchsafed her a victim-to-be- protected status. It was the rest of us, too. The school gangs specialising in schoolyard violence — again, bullying had not been named and shamed back then — tended to leave her alone because although crying and desperate fight-backs could be expected from the rest of us when they did the third degree on us, this girl might faint and it would be a visible indictment of the gang members involved.
Even those of us who specialised in verbal, rather than physical, abuse steered clear of her. You don’t want an easy jibe to result in a physical collapse. Most of the time you don’t want that when you’re a teenager, though there are exceptions. The key lesson hammered home to us all was that, however unfortunate the underlying ailment, the fact was that the girl who fainted, by virtue of that fainting, got away with blue murder.
We realised that a certain level of victimhood provides its own protection.
The girl who fainted had nothing on the Transfusion Positive folk. First of all, no comparison can be made between her ailment and what happened to women infected by the State with Hep C.
Hep C, when the issue came to light, was an incurable, difficult and life-threatening virus, and the problem was that these women for the most part developed it as a result of tainted transfusions when they were giving birth. It was a ghastly situation in which to be placed by the health service of the time, and it was complicated by the inevitable but lamentable tendency of the system to protect itself against what it saw as predatory lawyers working for Hep C victims.
After much advocacy, infused with justified anger, the State got its act together and a programme of amelioration was put in place.
Funding was provided in large amounts to ease the daily life of those sufferers. Over time, the controversy, together with some excellent communicators from within the ranks of the Hep C infected, fell off the front pages, then off the inside pages, then went away completely.
In the intervening years, various companies within the pharmaceutical industry came up with what amounts to a total cure.
Initially, these treatments were tougher than they are today, but the bottom line is that Hep C can now be eliminated from a sufferer’s system. Anybody who was infected can now — hopefully before they develop any symptoms, which can take some time — embark on a treatment which will cure them. Which is very good news for them.
Bad news came this week in the form of a report from the HSE’s Internal Audit Division, which revealed an astonishing level of extravagance in the use of State funds between 2009 and 2014 by Transfusion Positive, one of the bodies representing those infected with Hep C. A little less than €1.5m went to the organisation from the HSE during those years, on top of considerably more money in the previous years. The problem lies in how it was spent. Or mis-spent.
Just under €70,000, for example, was spent on overseas trips. Now, fine, some of them were to medical conferences, which sounds fair enough until it emerges that some of those conferences were for medical professionals, not for sufferers.
It would be reasonable, in that context, to expect the HSE to drop in to Transfusion Positive and say: “C’mere. What was the point of that overseas trip? Why does it look like a junket? What was the beneficial outcome to the members of your organisation?”
Well, it would be reasonable for the rest of us to expect that of the HSE, but it wasn’t considered reasonable by Transfusion Positive. That organisation basically said: “We’re not telling you the answers to any of those questions.”
Basic information sought on how the money was being spent was not supplied to the funder. Nor was the organisation responsive to queries about how the support group was being run.
The HSE must have looked at the number of weekends away taken by Transfusion Positive people, the restaurant bills (which were substantial) and at the €130,000 spent on items of dubious relevance to the illness, including beauty therapies.
They must have thought long and hard about how such expenditure could be justified. And they must have looked longest, and thought hardest, about a bill for alcohol which would not make sense for most support groups, but made even less sense for a group supporting Hep C people, whose livers are attacked by the virus and who are particularly susceptible to cirrhosis. But evoking sensible answers to legitimate questions proved impossible, not least because the auditors found the record-keeping either inadequate, or in some cases non-existent.
The entire episode is an object lesson in the importance of avoiding the “girl who faints” syndrome. Victims of contaminated blood transfusions should of course be supported by the State. No reasonable person could argue with that.
But such organisations must be subject to the same standards as are set for any other State-funded charity and should be available to explain when the HSE produces such a damning audit.
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