Tribunal gives outlet for long-suppressed grief

The context is simple

The context is simple. In the past 15 years two people from the haemophilia community of about 400 have died from the disorder; 74 have died from the treatment the State gave them for it. And those deaths were agonisingly slow and brutal.

"For me, it was a relief when he finally died. . . The little lad wouldn't suffer any more," said Martin about his only son.

Stephen was barely 11 when he died, "a pathetic little sight. . . so thin you'd almost be afraid to look at him, almost blind, his eyes like golf balls, his body like something out of Auschwitz," his little body haemhorrhaging huge volumes of blood, so wasted and pain-wracked that the weight of even the lightest bedclothes were enough to hurt him and warm August days failed to thaw the chill in his bones.

The little boy who was once "mad keen" on football, who loved school, who had the luck to be born at a time when those born with haemophilia could expect to live a full life, spent his last two months on Earth with a feeding tube in one side of his body and a morphine pump in the other.

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Still, Martin remained composed while he resolutely placed the reality of his son's short life and terrible death on the public record. So much so that, when lawyers rose to object to his introducing details that were not in his statement, he interrupted them to say evenly: "I'm almost 16 years waiting to tell my story," before adding courteously: "As I hear other people talking, little things come back. . ."

It is a feature of this tribunal, this quiet determination from those too long condemned to silence behind walls of prejudice, ignorance, stigma and neglect. In accents representative of every corner of Ireland, they came to Distillery Buildings to tell their stories, and no reporter could do justice to the way they told them: the catch in the voices, the muffled sobbing from the public gallery, the humble apologies to the chairwoman when recollections of death agonies caused them to break down.

Big, broken-hearted countrymen; despairing elderly mothers, angry; bewildered sisters and brothers; young daughters deprived of a childhood; a son-in-law bereft of a beloved father figure; wives who had buried young husbands, one of whom had contracted the virus herself; others on a death-watch as their husbands fade away before their eyes.

They laced their stories of loss and anguish with poignant glimpses of another life; of christenings, birthdays and mushroom-picking; of hurling ma tches, darts and card games; woodland walks, country drives and foreign holidays; of loving pacts to value every remaining moment; of the miraculous leap of faith in the decision to bear a child; of the value of friendship, the devastation wrought by gossip, the potential for heroism and inhumanity within all human beings.

Since 1985, more than 100 people with haemophilia have been infected with the HIV virus from poisoned blood products and well over 200 with hepatitis C. Three-quarters of those with HIV were also infected with hepatitis C.

With brutal irony, all this was visited on haemophiliacs at a time when confidence was never higher and the new era of self-treatment held out the promise of normal lives.

They had trusted their doctors implicitly. To be sure, some walked in fear of consultants such as Prof Ian Temperley and still talk of the "god-like manner" radiated by them. But they had to endure it; they were utterly dependent on them.

When Felicity and her husband asked in 1987 about the possibility of other contaminated blood products, they were told that a cataclysm such as the HIV virus could never recur. They believed Prof Temperley unquestioningly. They then went home and injected their three small boys with a product containing hepatitis C.

One story after another referred to the baffling wait for test results of something so infectious. Cruelly, delays could range from many months to as much as six years for a result which was literally a matter of life and death, not only for the sufferer but for his family and children in the womb.

Martin's little son, Stephen, was called for a HIV test in Christmas week of 1984, and when they phoned for the result were told that no news was good news. He insists that it was not until a routine check-up nearly two years later, when they were asked how the counselling went ("What counselling?" asked Martin), that they realised he had been diagnosed as HIV-positive.

On the other hand, the parents of a six-year-old boy were told out of the blue that he was HIV-positive when they didn't even know he had been tested. Sometimes people found out purely by accident.

In 1995, when Felicity was worried about one of her boys, she rang a nurse in Harcourt Street Children's Hospital to ask if a child so young could suffer from depression. "No," replied the nurse who was familiar with the family, "maybe it's the hepatitis."

In this way, she discovered that all three of her boys had been diagnosed with hepatitis C on separate occasions some five years before. But no one had told her. And once the terrible news had been delivered - sometimes with a casual yawn, or in a hospital corridor - were people then offered counselling or support?

"None. None at all," replied one witness after another.

Young men were sent home to empty houses to waste away from AIDS, still agonising about how or whether to break the news to elderly parents.

Stunned families were sent back to remote country villages in a climate where AIDS was perceived as "the gay plague", to cope as best they could, not just with a terrifying, terminal illness but with a destructive, corrosive secrecy; dying fathers terrified that their children would be ostracised; distraught parents fearful that a sick child's siblings would find out and blurt out the truth in the playground. Martin's 11-year-old son died without even his grandparents knowing the truth.

Acts of astonishing thought lessless by hospital personnel still haunt many of the bereaved. Dermot, a young man, was alone in hospital when he was told that he was dying, just 30 minutes before his parents were due to arrive. "He was terribly distressed . . . I thought that was very insensitive, very cruel," said his father, his voice breaking.

Sometimes the sufferer was never told the truth of his illness at all, with terrible consequences for those left behind. Larry described how he had taken his father-in-law, Neil, on the long journey to a Dublin hospital where he was admitted only because of Larry's insistence. Neil quickly lost consciousness and died within a week. No explanation was given. Hospital personnel rang to ask if they could do a post-mortem.

To this day, said Larry, they don't know if this was done. Later, when the local undertaker - a family friend - travelled up to remove the body from the hospital mortuary, he was instructed to tell the family that nobody should touch it.

When they and up to 60 neighbours came to view the body and escort it home, they found two uniformed security guards, one at the coffin and one at the door. Later Neil's only child would read of an AIDS death in St James's Hospital and would always assume this to be her father.

But at least Neil's face had been visible. The terror of a loved one dying in hospital, and being sealed immediately into a body bag, preventing relatives from touching or even seeing the body, was another recurring theme in the evidence.

These weeks in Distillery Buildings have been an outlet for long-suppressed grief and heartfelt questions. A time for swingeing condemnation but also for generous acknowledgments. Felicity's memories of her hospital visits are of doctors who "wouldn't even open the charts to read them", who chose instead to waste her time with routine questions of a kind that had ready answers in the charts.

Yet she spoke afterwards to this reporter simply to put on record her gratitude to the nurses in Harcourt Street Hospital: "They were closer to me than a family. . . They made it a home from home."

She had little but praise, too, for Prof Temperley's successor, Dr Owen Smith. The unstinting apology offered by counsel for the hospital was something she would have to think about, she said. In any event, it was the first she had received in all the griefladen years.

A feature of the two weeks of evidence was the temporary relief for the Irish Blood Transfusion Service. Testimonies were dominated by a passionate wish to create a public memorial to those who died. But it doesn't mean that people have forgotten where it all began; some want "heads on plates", others simply want to know what went wrong so that such a catastrophe might never recur.

Did it all come down to costcutting? Were risky products imported because they were cheaper or because attractive deals were available? Agatha stuck firmly to her version of a 1982 meeting, where Prof Temperley was a speaker.

Asked about contemporary media references to a possible problem with American blood products, and why this State could not produce its own, his reply, according to Agatha, was: "That it wasn't possible to produce our own because Pelican House [the blood service's headquarters] had the monopoly and could charge what they liked for treatment, and this was the reason why it was imported."

To what extent was cost-cutting or arrogance or complacency responsible for the continuing infection of people with haemophilia long after a screening test was available? Or for the fact that Felicity was not immediately informed of the hepatitis C diagnosis on the first child, when such prompt action might have saved the other two?

Or for the fact that one of her boys was put on "prophylaxis treatment", a proven preventive of long-term joint damage for those with haemophilila, when another was not? Or for the three to four-hour delays getting destructive bleeds attended to in hospitals?

For the seemingly endless, chaotic searches for missing charts? For the offensively hurried conversations in public corridors? For the shortage of ambulances and morphine pumps for families already stunned by grief?

As in other tribunals, the Lindsay hearings have thrown up ripples that extend far beyond the haemophilia community.

"The whole healthcare system is on trial," says Raymond Bradley, solicitor for the Irish Haemophilia Society. "It's about the way doctors deal with patients, about the way doctors ensure that patients understand the consequences of any diagnosis, about what support or counselling is put in place. . ."

And certainly, it is also about the terrible stigma and secrecy which ordinary people like these are forced to carry, day after day.

"Back in February, when I was asked would I give evidence, I said No. . . I was afraid of drawing attention to us," says Felicity. "But then I thought, somebody had to speak for my boys. And I realised that this was my one chance, my one and only go - not for me, but for them."

Amid the agony of watching her boys grow more withdrawn, more drained from tiredness and depression, lying listlessly on a sofa for hours after a short game of football, a greater terror still is of seeing them exposed to cruel gossip and being isolated.

"They say they wish they had cancer because at least you can tell people that you have cancer. They don't tell friends because they're afraid they won't be their friend any more."

But among the many things of lasting value these two weeks have produced is the fact that those who have suffered so terribly have taken the first cautious steps towards smashing the wall of secrecy. To begin with, only two of the witnesses were prepared to be named and nearly all were intent on giving their evidence from behind screens.

In the end, four people allowed their real names to be used. And all but a few chose to dispense with the screens.