Condemnation has been pouring out ever since the news was leaked. It's that kind of story. Even if you know that doctors are desperate for donors, and that there is a crisis in the health service because the waiting list is growing and people are dying before organs can be found, the moral position seems blindingly clear. Frank Dobson, the Commission for Racial Equality, Unison, the BMA, the Society of Black Lawyers and others have all said how utterly unacceptable it is for the NHS to have colluded in such discrimination, especially in an area where people are meant to be altruistic and noble. I agree.
But there are other issues raised by this case that are more complex and controversial. Firstly, I think it is important to remember that a life was saved. Secondly, although I am an anti-racist and would die for that cause, I believe strongly that in the privacy of their own homes and lives, racists must have the right to express their views and to make personal decisions. If we invade or police these inner spaces, we must have good reason to do so. The videos of the young thugs accused of killing Stephen Lawrence were private, but they did need to be brought into the public sphere because they provided some vital evidence in an important case.
In the case of the family at the centre of the donor controversy, I think that while we might say we abhor their attitudes, we cannot deny them the right to say what they think. For white Britons, in particular, the sense that there is a sanctuary where the state cannot intrude is of fundamental importance. I think this is why there was such an adverse reaction to the recommendation in the Lawrence report that suggested consideration should be given to amending the law to allow prosecution of offences involving racist behaviour in private places.
You could also argue that people are entitled to express all sorts of wishes, even unspeakable ones, to those who are dealing with them professionally. In other words, they might attempt to take their private beliefs and urges into the public sphere. But they do not have the right to have all their demands met.Unfortunately, the NHS (and other sectors, too) has created a culture where many individuals feel that they do have this right.
Ever since the Patients' Charter, which was put in place by the Tories under John Major in 1992, an atmosphere has been created where service providers have been told that their "customers" or "clients" must determine the care they get. The only limits placed on these choices are those to do with resources. This has led to untold problems which are rarely ever discussed. For example, we never hear about the large number of black and Asian health care workers rejected by patients who are exercising their choice not to be touched or treated by them.
Last year, after I had written about discrimination faced by black nurses in this country, I had a rush of letters and phone calls from these nurses and other staff, including doctors, complaining about what was happening to them. One Asian nurse told me that she went to a post-operative patient in the middle of the night to see if he was all right. He woke up and started shouting abuse at her, demanding a white nurse, and when she confronted him, he hit her with a vase. She was completely unsupported by the senior nurse who told her she should have quietly submitted and sent a white nurse because he was a "client".
A midwife sent me photocopies of two birth plans written by articulate middle-class white women. We have been told that, as modern mothers, we can decide exactly how we want to deliver our babies and that, unless there are medical reasons, our desires will be met. These two mothers specified that they wanted only white staff around at the time of delivery. In both these cases, without very much being said about it, these wishes were met.
When black midwives objected, they were told by a superior that although she was not a racist, birth plans were an important development that gave power to mothers and that it was not her job to upset the women at a difficult enough time. This is the dilemma, a spokesperson for the Kings Fund tells me: "The principle of consumer choice, which is now a core value in the National Health Service, can come into conflict with the founding value of equity which remains at the centre of the Government's health policy."
That conflict is what makes this donor case so important, and why I think that we need more than a fast and furious response, which will do little more than settle our raging emotions. We need to broaden the debate and to work out more carefully just how much say people can have in institutions providing essential services. The law is too crude an instrument here because so much is done that is within the bounds of confidentiality and discretion. And the debates need to go beyond race.
Would hospitals accept the organs of a dying militant feminist who insisted that her parts only go to a woman? Or take one of my closest friends who has written on his donor card that he would not wish his organs to go to a private patient. Is his choice any less dangerous and obnoxious than that made on grounds of race?
Much of the confusion about the case of the racist kidneys has come out of the cult of client choice that has been promoted with such enthusiasm in the NHS. This has created dangerous expectations and conditioned professionals into acting as efficient suppliers with no ethical responsibilities. Now it has begun to usurp such profoundly important principles as equality and fairness, which in turn damages not only black people but all those using the service. I really think that to focus only on this particular fiasco is to miss the point utterly.Reuse content