What's the point of hurting the health service?

The doctors did not act out of madness or badness. They took organs for research that could save lives
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The Independent Online

Only a couple of the parents suing the National Health Service for secretly removing their dead children's organs have spoken to the media. But I bet that if each and every one of the 2,150 plaintiffs gave a statement to the press, they would all, like Kay Wadey and Ruth Webster, say that it was not about the money.

Ms Wadey's son Harry was born prematurely, and died because of breathing problems. She was asked by a doctor if a small slice of Harry's lung could be taken to confirm the hospital's diagnosis of the cause of death, and agreed. Later, in 1999, prompted by the Bristol Royal Infirmary and Alder Hey organ scandals, she called her local hospital and found that her son's brain had been taken as well, without her permission.

Five years on, Ms Wadey's lawyer has turned down an offer from the NHS of £1,000 in compensation for the disrespectful treatment her family was subjected to. The Alder Hey families got £5,000 each, and among these other families the feeling seems to be that they deserve to get the same. Ms Wadey explains that "the money is not particularly interesting, although if you have made an offer to some families somewhere, you are looking at some form of equality."

Another woman, Ruth Webster, whose baby Ellen was stripped of organs, feels this same injustice keenly. "We need to be treated fairly," she says. "Other families in other areas have been offered substantially more than we were offered, and it just seems so unfair that they are saying their children were worth more than ours."

Maybe she has a point. After all, even the judge in the Alder Hey compensation case commented that he considered the pay-out to be "sensible and fair". If such a payment is sensible and fair for one person who has been misled about the treatment of their child's dead body, then surely it is sensible and fair for another person who has undergone the same trauma to receive the same amount?

Except, perhaps, that maybe the Alder Hey settlement was not sensible or fair at all. Maybe the £13m of NHS money that it cost could have been spent on other things, like health care. Maybe, too, the millions that this last bunch of plaintiffs feel they need to receive in the name of "fairness" might be better spent on that sort of stuff as well.

For it appears to me that the Alder Hey families, and these further 2,150 people, have already achieved what is important in the wake of the unacceptable deceptions they were subjected to. The NHS has now curbed its practice of taking organs in this way, and the Human Tissue Bill, now proceeding through Parliament, will further address such concerns.

It is sometimes acceptable to sue the NHS - when legal action will challenge or expose bad practice. But in this case the bad practice has already been admitted to, and changes have been made. There was never any need for litigation against the NHS in regard to this issue. Yes, it was appalling that the relatives of the dead were handled so dishonestly and so patronisingly by the medical profession. Yes, the reports of parents exhuming and reburying their children several times, as they recovered more organs, were deeply distressing. Yes, it was awful that the hospitals were so reluctant to co-operate with the families of children whose body parts were taken. But none of this can be addressed by handing over money. It can only be addressed in the way it has been.

Sometimes - often - people end up suing the NHS because they cannot get the acknowledgement that they need, and the apology that they need, for what has been done to them. So much money is being squandered on unnecessary litigation that the NHS should start looking more carefully at why it is that people feel driven to suing it.

But in the case of this unending body parts scandal, the idea that financial compensation is what is needed, rather than full and frank discussion of the real issues, is deeply and damaging.

First, some perspective. The medical profession, and particularly Dr Dick van Velzen, the consultant who was responsible for so much butchery at Alder Hey, were certainly wrong to be so sneaky and underhand in their dealings with bereaved people.

But they did not act out of a desire for financial gain, or out of madness or badness, or for criminal or nasty reasons. They took organs for medical research that in the future could save lives. Some people want this to be done for their own bodies or those of their children. But not enough people, sadly, carry a donor card to ensure a plentiful supply of organs.

For some people, the need for donor organs is so great that they want the donor card scheme to be turned on its head. They suggest that people should carry a card only when they do not want their dead body to provide organs that may save the lives of others.

To me, such a move would be sensible, a pragmatic solution to a difficult problem that would suit the collective purpose of the National Health Service, and confirm a utopian idea of a caring society as well.

Others though, quite clearly do not see things that way. They do not see the idea that their child's organs may have helped another, directly or indirectly, to be comforting or helpful. Instead, they see the removal of parts of their children's bodies to be nothing but an insult and a desecration.

They have every right to have that reaction. In cases of religious faith, for example, the liberty taken by medical professionals is inordinate. In these particular cases, in which parents are already suffering great grief at the loss of their children, even the theft of their parental consent is a cruel, unfeeling act.

But the fact is that until the turn of this century such things were routinely done in hospital. Everyone who ever had a relative who died in hospital cannot now expect compensation because a practice that was acceptable to the medical profession turned out not to be acceptable to much of the public.

Yet already, in the wake of Alder Hey, we are seeing this happening. Thousands of people have been given money, because somehow we have come to believe that money sorts out our problems. Now a whole new tranche of people has arrived, demanding to know why one lot of people got £5,000 while they've only been offered £1,000. The whole thing is insane.

Insane with grief, surely. All this - the reaction, of the parents, the reaction of the public, even the reaction of the Alder Hey judge - is not about what happened to those bodies. It is about losing a child.

It used to be, not so long ago, that more or less everyone had had some kind of encounter with a child who had died. Now, thankfully, and in no little degree due to the medical research we now find so repugnant, such an awful event is rare and unimaginable. Any feelings that a bereaved parents may have, are now sacrosanct, whether they are logical or not.

The poor parents who are dragging the NHS through the courts have nothing to gain. The process that hurt them so much has been discontinued, and that discontinuation has been enshrined in the law. The organisation has also offered an apology, which reportedly has been refused by the plaintiffs because of the money issue. The plaintiffs say they want "fairness" or "equality". But really, all they want is to have their children back.

d.orr@independent.co.uk

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