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Lord Alderdice: My Lords, I declare an interest as a psychiatrist, and as a psychiatrist married to a consultant pathologist who works in the NHS. I join other noble Lords in saying what an interesting and enriching debate it has been, particularly because of the quality of the three maiden speeches. The speeches of my noble friends Lord Roberts of Llandudno and Lady Neuberger, and of the noble Baroness, Lady Murphy, have been a great delight to listen tovery thoughtful, informed and well articulated.
Those speeches reminded me very much of why I so enjoy this House, and how I have from time to time found it a substantial contrast to another place, where I worked for some time. Indeed, I well remember a debate in that place for which I was in the Chair, and therefore the Speaker and unable to speak, as is the curious meaning of our terminology in such places. I listened to many colleagues speaking with much less knowledge, understanding or appreciation of the issues than has been evident in your Lordships' House.
That leads me to substantial anxiety about this Bill and what has happened, and to enormous sympathy for the Minister as he not only winds up the debate but tries to take through the House a Bill that is so inordinately problematic. In that regard, the noble Baroness, Lady Hayman, expressed what many of us feel, not only so far as the poor Minister is concerned. She also brought a great air of reality for those of us who work with people in the health service, and about what happens away from the rarefied atmosphere of those who devise human rights legislation or even Bills of this kind.
The Minister said that the Bill was to deal with previous legislation that was unclear, out of date and unworkable. It was also to respond to some very difficult incidents. Although those are very commendable propositionsthere is little doubt that the legislation is out of date; I do not dispute thatthe very number of civil servants who have come along to assist the Minister may be an indication of the complexity of the Bill in its present form. It may indicate that the matter is not simple, and that the Bill does not make it particularly so. No matter what is done with the Bill, the issue will be extremely complex. That creates the problems for his aspiration for clarity and workability.
What led us to the Bill? It was the problem that practices of presumed consent that had been around and developing for some time were no longer
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acceptable in the current climate, in some cases for good reason. Also, some practitioners had pushed themselves well beyond what was accepted even by their colleagues as conventionally appropriate. When the matter came to public concern, there was profound anguish on the part of those affected, particularly the families. That was referred to by the right reverend Prelate the Bishop of Portsmouth and my noble friend Lord Roberts.
Thereafter, it seems that the question of anguish and pastoral concern largely disappeared from the reality. In the vast majority of cases, we were dealing with people who had difficulty overcoming the bereavement that they had suffered. I have seen little evidence that their need for assistance in overcoming their bereavement has received much attention. Frankly, if, as parliamentarians, we think that passing a piece of legislation and setting up a regulatory authority will in any way deal with the anguish that there was in the past or will be in the future, we are sadly mistaken and rather infatuated with the power of Parliament. The fact is that those people have suffered and will suffer.
What happened was that their grief, which had not been fully overcome, was revealed, was laid bare, and in some cases was created not just by the events themselves but by the attempt to address the eventswhen people were going around telling the families things that they did not wish to know and provoking more grief for them. We have to be very careful with what we do. The first rule of medicine that we teach junior doctors is "First, do no harm. Thereafter, with a bit of fortune you may do some good". This whole business and the reaction to it has opened up the possibility that we can do harm, and we should be careful.
The question of remainsas we sometimes euphemistically describe themwas brought home clearly to me two or three weeks ago in Peru. I was in Ayacucho in the Andes, where it is said that some 70,000 were "disappeared" by the army, the Shining Path and the MRTA. Of those 70,000 only a few of the remains have been made available. I was present for the handing over of some five sets of remains to families. It was only the fourth handover since the disappearances happened many years ago. I was struck by the meaningful nature of that handover and how important it was.
But we must be very careful about reifying the notion of people and personalities into their bodies. Subsequently I have substantial questions about the notion of funeral services for body parts. When someone who is still alive has an amputation we do not have a funeral for their limb. In fact, we strongly believe that that person should not be regarded as any less a person because they have lost a limb or two or whatever. Yet, somehow when the person is dead and gone, some body part that remains around almost indefinitely qualifies for a funeral. I am not sure that psychologically and spiritually that that is the best way of dealing with it and there may be issues for colleagues such as the right reverend Prelate and my noble friend Lord Roberts to address from a spiritual and psychological point of view
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as to whether that way of addressing the matter is necessarily the best way of doing so. There is a profound paradox within thatthat we are making the body parts into the persons themselves, rather than assisting people to deal with the real problem, which is not the remaining body part but the remaining grief and anguish inside themselves.
This leads me to the whole question of understanding what is going on. It is clear to me that in the drafting of the Bill there was a profound lack of understanding of what actually happens. For example, it was suggested that pathologists were not seeking consent. Of course not. In the vast majority of cases the pathologists never meet or see the patient. How could they possibly be obtaining content? The clinical worker obtains the consentthe person with the patient, the person who is often with a grieving family or with a person in great difficulties or distress over an operation. In any case it is not the pathologist who seeks the consent, although, not infrequently, clinical workers go on to carry out research, publish a paper and do not even put in the title of the paper that it was the pathologist who produced the diagnosis upon which the clinical worker had based the paper. They should not be doing that but such things happen.
Understanding what is going on is very important. The Bill has emerged from a tragedy over the way that post-mortem material was dealt with. Many fewer post-mortems are now carried out. The vast majority are carried out as coroners' cases. In fact, in Northern Ireland the paediatric pathology service virtually collapsed after all of this because people did not wish to do that type of work any more. Indeed, some of the pathologists personally suffered badly as a result of what happened. Therefore, it seems very difficult to see how there can be other than a detrimental outcome.
I asked the Minister whether he was aware of what happened in Northern Ireland. In expectation (which is always a dangerous thing) of what Parliament might decide with regard to this piece of legislation, the Department of Health, Social Services and Public Safety in Northern Ireland introduced regulations and arrangements on the question of consent before the legislation had been dealt with here. I understand, although I am open to correction, that the result of that was that many clinicians working with patients filled in the relevant form with the words "No consent". It is not entirely clear to me whether that meant that no consent was asked for or whether it meant that consent was not given when it was asked for. However, no consent was given.
It is now impossible to have a complete cancer registry in Northern Ireland for the past 12 months because it was not possible to acquire the necessary material. I know that attempts are made within the Bill to ensure that that does not happen in the future, but it has already happened. When people's consent has not been obtained, one cannot then go back and get it.
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Therefore, as I understand it, there is now a lacuna in Northern Ireland, and that says something about the anxiety that the Bill has created. It has not been possible to bring through the legislation in a reflective, calm fashion because it deals with emotions that are difficult and painful. That is why we have great sympathy for the Government and for the Minister as he tries to work on the Bill. He is dealing not only with a piece of legislation but with people's feelings on all sides, and we appreciate that that is very difficult.
One result was that when the inquiry was conducted in Northern Ireland, the health Minister at the time attempted to ensure that no one with any medical knowledge and qualifications was seriously involved in it. I think that that is an unhappy reaction. It may be helpful seriously to consider whether we can make certain that that does not happen in the future by ensuring that, for example, the Royal College of Pathologists is represented on the Inspectorate of Anatomy and Pathology or in some other way in order to make it clear that such marginalisation of those who are involved is not acceptable in England, Wales and Northern Ireland.
The noble Lord, Lord Hughes of Woodside, raised the issue of presumed consent. That is an important and difficult matter, and obviously the Government have decided not to go down that route. That is not surprising because this Bill is going in completely the opposite direction. The whole basis of the Bill is that the presumed consent on which people operated in the past requires not only to be regulated but reversed. Therefore, I suspect and fear that, by following the direction which the noble Lord has struggled manfully to do for some 30 years, he may have some more hills to climb.
I believe that the noble Lord was right to say that the real concern of the public was based on what he eloquently and floridly described as the macabre nature of the collections rather than the proper use of the material. I think that the overwhelming majority of the population is prepared to accept the latter.
Let us put ourselves in the position of some of the relatively young (although it does not make it any easier when you are older) medical or nursing staff who try to obtain consent in the context of a tragic death, or let us consider the vulnerability of someone undertaking an operative procedure. Any of us who have done that know how difficult it is and, as I said, it does not necessarily get easier with the passing of the years or with experience.
What is the easiest thing to do in those circumstances, when a person knows that, if he does not follow the procedure properly, he could face criminal convictions? The easy answer is: do not do it. What mileage is there in doing so? What mileage is there in putting oneself through that and in trying to explain to the family exactly what will happen to the brain, as was eloquently described earlier? It is not an easy or pleasant procedure or one to which a pleasant description can be attached. It is not the kind of thing that you talk about over tea, unless you happen to be married to a pathologist.
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Therefore, the easiest thing is to ignore it and not to try to seek consent. It is too difficult. But the result is that the material is then not available for the work to be done or for the research to be undertaken. We are dealing with human beings who are under clinical pressure. What is the incentive for them to put their necks in the noose? It seems to me that it is much easier not to bother. I wonder whether criminalisation is the way to ensure that people fulfil the proprieties of regulation. When we are trying to move away from criminalisation in so many areas, I find it strange that this is the kind of sanction that we think appropriate when dealing with these issues.
The difficulty is that by not seeking the consent of the patient because of anxiety and fear, we may end up doing the opposite of what the patient and the family want. When one feels anxious and says, "I'll not go down that road; they are terribly upset", who knows, a week or two later it might well have been that they would have said, "If only the body of our loved one had been used, there would have been some value in the tragic loss or the pain that I have gone through". Paradoxically, by going down that particular road, which heightens everyone's anxiety and I am not sure addresses all of the problems, we end up with the opposite of what we want.
The whole question of regulation and whether it is the best response to every problem that arises was raised by the noble Lord, Lord Winston, and others. There is a tremendous tendency for us to follow a pattern: if there is a problem and public anxiety, we set up a committee. Any good committee that does not come back with recommendations of regulations, legislation and someone to be appointed to ensure that the problem never happens again can be quite sure that it will never be appointed to a future inquiry. However, that said, it is a brave Minister who will stand up and say, "I have heard all of that but I do not think that it is appropriate". We have almost got ourselves on a treadmill in which our way of responding to every crisis is to produce more regulation. Of course, the more regulations that are produced, the more guarantee that people will break them because there will be so many regulations it will be impossible to get up in the morning and have your breakfast without doing so.
None of us, having worked on and thought through the debate, can be in any doubt that we are dealing with an extraordinarily complex and delicate set of issues. None of us can have anything other than sympathy for the Minister and his colleagues. They have tried to deal with some of the issues and now know that they have much more work to do. There is no doubt in my mind or, I think, in the minds of other noble Lords, that this is not brought forward by a government with malign intent. On the contrary, it is brought forward by a government with a concern to address some very real issues. What they have discovered is that by the moves that have been undertaken, they have unearthed even more issues. I am sure that all of us would wish them well and promise them our involvement and co-operation insofar as we can as we proceed through the Bill in the autumn.
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