Northern Ireland Assembly

I appreciate that clarification.

The trust with the greatest responsibility did not make appropriate arrangements, so another local trust had to be involved. In this case, Enniskillen very readily responded and made sure that the services were available for the affected families in their own homes, or elsewhere. It should not have been necessary for elected representatives, or anyone else, to have to intervene at such a distressing time for the families.

The upset caused has been mentioned before. The revelations around this issue have been dreadful, and the repercussions will continue for a very long time. There is therefore a greater need for reassurance for the families - reassurance from the highest level. First, the practice cannot continue without the express consent of the family. Secondly, the Minister should immediately outline a departmental strategy to make sure that not only will this not be repeated in the future, but all who need support will have it readily available at a local level.

Go raibh maith agat, Mr Deputy Speaker. I support the motion and thank Mr Shannon for bringing it before us.

We agree that the announcement made by the Royal Victoria Hospital on 12 January was a shock to everyone, but more so to the families and the parents of the children involved. I accept Mr Gallagher's point that it affects the wider family - from brothers and sisters right through to aunts and uncles. When the statement was made by the Royal Victoria Hospital the Minister pledged to do everything possible to improve procedures governing the retention of children's organs. She also said in a media statement that her thoughts were with the families affected and the extreme distress that this has caused them.

Everybody has been aware - and it has already been mentioned by some Members - of the continuing scandal at the Alder Hey Hospital in England. We have been told that over 40,000 organs were retained. I want to place on record that the Minister of Health, Social Services and Public Safety has asked her officials to monitor developments closely to see what emerges from that. The report into the scandal at Alder Hey is due to be published tomorrow, and according to media speculation it is going to be a very damning one. I suggest that the Minister and her officials look closely at this report.

Everybody is shocked that hospitals removed organs from children without the consent of the parents. The key issue is that it happened without consent. I am thankful that the procedure has changed. However, it has come too late for those who were involved. I am shocked by the announcement that the retention was standard practice and that there was therefore nothing wrong with such action. It was standard practice a number of years ago to send children up chimneys; that was not right either. I do not accept the line that it was standard practice. Without consent, it is wrong.

Some Members mentioned the announcement from Altnagelvin Hospital in Derry that it had retained organs. How many hospitals are we talking about? I was shocked that Altnagelvin Hospital stopped this procedure just last May. We need to discuss that issue as well.

Who sets these procedures? The doctors? The hospitals? Questions must be asked about accountability. The Minister has said that she will take on and implement recommendations from the Alder Hey inquiry. The retention of organs is wrong. The seeking of consent from parents would have solved many of these issues. What were the hospitals afraid of? Parents would have supported the need for research into the deaths of their children. I cannot see what the problem was with asking for consent.

Mr Shannon and Mr Gallagher also mentioned that this has caused parents to revisit the deaths of their children, and it is shocking for them. I agree that hospitals need to provide proper long-term counselling - it should not be just a one-off measure - which includes the wider family.

We need to monitor standard practice every year, because standard practice can change from one year to the next. We need to touch on the whole issue of accountability by the Health Service.

I support the motion, and I thank Mr Shannon for proposing it. Go raibh maith agat.

It is noticeable that for once we are debating a topic in a fairly sombre mood, without any attempts at political point scoring. This is clearly an issue of major concern to the entire community and certainly in all parts of this Chamber.

The issue that we are examining is the fundamental right of people - in this case, the next of kin of recently deceased people - to be told the truth or, if dressed up in appropriate professional jargon, to be allowed to give an informed consent.

The central point is that for too long doctors have not been putting people in that position. Until very recently there was a major presumption that if doctors felt that something was right, it was right, and that patients should really do as they were told. This might or might not be good for the patients, but it is certainly not good for the doctors. That is the issue we are facing here. Doctors, who had been put on a pedestal, assumed that they should base their decision on what best suited their clinical needs, rather than what gave full respect to other people.

In a sense, I say that as a criticism, but I am conscious that my own profession of social work might be seen by some in a similar light. However, we learned, rather earlier than doctors did, that professional competence and decision-making are not excuses for getting away with concealing matters from those most directly involved.

Mr Shannon talked about how this practice was carried out with the best of intentions and about how it was best practice. Clearly, it is not best practice to treat any deceased person's organs, especially a child's or a baby's, in that way. It was bad practice. It was just plain wrong. It is right that the Assembly should look at this issue and examine the lessons for the future, so that from now on these matters, which cause considerable grief to parents and, in many instances, a wider family circle, are dealt with in a sensitive, caring and professional manner.

Having criticised doctors, I acknowledge the difficulties under which they were operating. Bereavement causes enough trauma for a family, particularly in the case of a sudden or tragic death - and the death of a child or young person obviously falls into that category. It was natural to try to soften the blow. It is difficult to criticise those who sought to soften that blow by not providing a full explanation of what a post-mortem required.

Hospitals in general, and the Royal Victoria Hospital in particular, have improved practices considerably, especially in regard to written material. That should be welcomed, and we should congratulate them for it. However, the fundamental point is that they failed to provide the necessary information in a sensitive and caring way and because of that a situation was created which left families even more traumatised when the information emerged.

I will not go over all the points made, particularly by Mr Shannon, about the difficulties that individual families have faced. We are aware of the details, and we do not need to prolong them. However, we must ask the Minister today for an assurance that procedures will now be implemented to ensure that such trauma does not occur again. We must also ask the Minister what exactly is being done in the Royal Victoria Hospital, and in other hospitals, to deal with those who are traumatised and suffering either because they know that their loved ones' organs were retained or because they still do not know the full story. Some may still be in that position.

In addition, I ask the Minister to deal with an issue which I believe has been clouded by the use of the term "retention". As I understand it, in almost every case where a post-mortem is carried out, it is necessary to retain some of the tissues taken as samples, because further tests may be required or the lab might have to examine them again. In a large number of cases where the term "retention" is used, it is possible that only a small amount of tissue is retained for a few days for testing. Clearly, as Ms Ramsey said, parents might understand the need for a post-mortem if it were explained that the procedure could help to save other children's lives. We must do everything to ensure that scientific advances are made possible from tragic deaths.

You mentioned the retention of tissue samples from post-mortems. Do you not agree that parents at Alder Hey Hospital were duped into allowing the retention of their children's organs -

Please address the Chair.

I am sorry, Mr Deputy Speaker. The Member will agree that parents at Alder Hey Hospital were asked to sign a consent form to allow tissue samples to be taken from their children. However, that tissue-sample authorisation led to the retention of children's organs.

I do not want to become too involved in the Alder Hey issue. In the light of your earlier comments, Mr Deputy Speaker, that would definitely be beyond the Minister's responsibilities. However, there is no doubt that some people believed that a sample was being kept only to subsequently discover that an entire organ was being kept. That is the kind of problem that arises because of a lack of complete information. Perhaps the attempt to mitigate trauma actually created a situation in which the trauma was increased.

As for the specifics of retention, the Minister must explain if statistics on retention refer to small samples that are retained for specific reasons in the short term. Is there a case for the retention of samples? One hospital lab staff member whom I spoke to raised the possible scenario of another Dr Shipman, whose behaviour necessitated the examination of a large number of his patients' samples.

Subsequently, if no tissue is retained, it is not possible to carry out the checks necessary to ensure criminal prosecutions and to provide lifesaving measures for other patients. We therefore need to compare that to the suggestion that some 300 organs were retained in the Royal and to the concerns about Altnagelvin Hospital and others, where organs were retained for lengthy periods for apparently no good reason. That is the opinion of the families concerned, although possibly in the eyes of medical staff at the time they were being retained with very good reason. We need to be sure that when the Minister gives statistics, those relating to the retention of complete organs for long periods without due cause are not included and, therefore, hidden.

We need to be assured that there will be no repeat of such trauma as parents' facing two funerals, or three, because the issue of retention has not been clarified.

I welcome the motion that was proposed by Mr Shannon. It should concern us, but the important thing that we can learn is what steps the Minister is taking to ensure that families are protected from such trauma in the future and that those who have suffered trauma in the past are helped through it.

This controversy has been raging for some time, and it has now found its way to our shores. The first thing that we should acknowledge is that nothing will ever be the same again. It might give us a sense of how we can make a difference to people's lives, even though people have suffered. I am sure that the Minister will be aware of the importance of the decisions she makes and the guidelines she lays down, given the effect they may have on people's lives.

It seems to me that there is little point in castigating the doctors, and I am sure that some of them will feel very vulnerable at this time. Any profession, including that of politician, runs the risk of becoming case-hardened. You can deal with circumstances all day, every day, that can overtake you and become part of your working ethos. Perhaps you become a little less human than you would normally be to those who are suffering, or perhaps we laypersons just expect you to be.

We have to be conscious of the balance needed. There has been a lot of hype, especially on the mainland where it has been drip-fed, and it has almost taken coaches and horses to draw out of the authorities what actually happened. When the Minister is finally able to reveal everything, the Assembly will be able to know exactly what happened. Not only will we know everything, but every parent who is remotely affected by what has gone on in our hospitals - our "theatres of excellence" - over the last 50 years will also have access to that information.

As an aside, if I had been fortunate I would have had an older brother. However, I do not know whether any organs were taken from him in the Royal Victoria Hospital. I do not know whether I want to find out or if my 89- year-old mother wants to know, for it has been a long time. I think she has got over it, but there are people who lost babies a short time ago, and who are still grieving for them. The babies in some sense have been passed on "unwhole". If we are to strike a balance, we need parents in the future who will allow their babies to be passed on "unwhole".

We will have to strike a balance between protecting life and investigation or exploration. There must be no ambiguity in any guidelines that may be laid down, and it is important that the Minister say that it is not just necessary to obtain consent; the consent must be informed.

The retention of organs is not the issue, provided that the hospital asked permission first. Hospitals may even want to ask for a degree of "ownership" of the organs. However, the parents and wider family must be made aware of what is happening at every step - they must be informed of every dot and comma.

There is no easy way to deal with the issue. It is a sombre and difficult subject, and a hurtful circumstance affecting humans. However, I implore Members to be careful to avoid taking a populist attitude towards the matter. When the Minister of Health, Social Services and Public Safety tells the House, as I expect she will, what the future may hold, it is to be hoped that she will give society the option to have access to those doctors operating under an ethos that cares and that shows it cares. It is to be hoped that the Minister will also tell the House that a life lost was an opportunity for a life to be saved.

I am sure that the Minister and her officials, or the medical staff from the Royal Victoria Hospital, Altnagelvin Hospital and other hospitals around Northern Ireland, are not relishing the media attention surrounding the debate. They too need to be protected. They can be protected by processes, guidelines and the politicians in society who must strike that balance.

It would be disastrous if we were to buy organs from Africa, or carry out some other such shameful transaction, in order to carry out research. Medical science must explore and develop. However, that should not stop us from commiserating with those who do not know if their loved ones were treated like commodities - as we have seen in Alder Hey - or treated with love and consideration, or, as I suggest, dealt with by someone who was case- hardened.

I will be brief, as most of the key points have been made. This is a depressing and distressing situation. However, we must remember that the medical ethos, customs and practices of the past 50 years are not necessarily the same as those today. There was a need for research, and, rightly or wrongly, it was considered acceptable to use organs in the interest of medical science.

However, it is surprising that those practices continue in this day and age when we are familiar with most aspects of the human body and when the understanding of human genetics has reached such an advanced state. It is appalling that those practices still go on without families' being consulted.

It is to be hoped that hospitals have learnt from this crisis of confidence in their judgement. There now needs to be a clear protocol between doctors and families. If doctors wish to engage in this sort of activity, it should be done in a way which is clear and above board. I call on the Minister to develop such a clear system. I support the motion.

I too support the motion, and I was impressed with the sympathetic manner in which it was moved.

When the notices were published a couple of weeks ago and the information was given to the public by the Royal Victoria Hospital, followed by a less informed bulletin from Altnagelvin Hospital, it is no exaggeration to say that a shock wave passed through the community, particularly among the thousands of people who, over the years, had passed through the portals of those hospitals for one reason or another. They were left with a terrible question in their minds. While we know that, statistically, this would not apply to the majority of people, nonetheless it applied to some, and people do not know whether they were among them.

This has caused great distress; I know that for a fact. Many representations have been made to my office by traumatised and distressed families asking me to find out what happened to their children, their loved ones, because they felt that they could not do that themselves. I have heard references to involvement by politicians - unfortunately, whether we like it or not, we are involved. In many cases, we will be a buffer between the hard reality of the facts and the conveying of those facts to the families - the parents and relatives of those involved. There is still an element of doubt in the public's mind as to whether we have, or are going to get, a full disclosure of what happened, and whether we will be able to have confidence in the new procedures which we all hope will be put in place.

In a statement issued two weeks ago Altnagelvin Hospital said that one organ was being held for pathological examination. However, two weeks later in another statement it said that organs which belonged to no less than 60 people - 15 children and 45 adults - were retained between 1992 and May 2000. This is not some old practice; it was ongoing up until May 2000. There is nothing to suppose that it did not continue from May up until the recent exposure. That has caused immense distress, sorrow, pain and grief to the parents. It has also caused other emotions, which I discovered personally, of anger and outrage that they had been so treated.

Whatever happens and whatever the Minister does must assuage those totally understandable emotions, which are deeply held. As a salve almost, we have been told that this is past practice and that "those sorts of things were done in those days." However, we are not talking about "those days"; we are talking about recent history. As I mentioned, in the statement from Altnagelvin Hospital it said that this happened no later than May of last year.

Information was withheld from parents and relatives. This was not done accidentally; there was a policy of ignoring the rights of patients, families and parents. Let us not get away from that. There was an arrogant regime in the medical profession. Its members assumed that the ignorant patient knew no better. The reality is, however, that in what are often very tragic circumstances where bereavement is only a couple of hours old, it is enormously generous of parents and relatives to allow autopsies to be done for medical purposes and for organs to be donated or researched. It is not a question of importing organs from Africa. The goodwill to enable research to go ahead is in the community and has been for many years. We all know that research in these circumstances is essential.

The need for research can be immediate, if the relative or child died of a disease, disorder or complication that might affect immediate family members and may be part of their physical make-up. There is also long-term research into more modern and beneficial medicines. I have no doubt that people will respond, but they resent the deceit that they feel is being practised on them. I tend to agree with them. We have heard about the "tick in the box" forms, which do not really allow for any appreciation of what is happening. A much more open regime is needed.

When the news first broke, I asked the Minister whether she would hold a public inquiry. Her response was that she had asked the Chief Medical Officer to inquire into the issue, but that is, in a sense, an in-house inquiry. I do not want to go into the detail of individual cases, but I think that it would be appropriate to establish the extent of organ investigative work. We need to know for how long it was practised, how many patients were involved, what has happened - and what will happen - to the organs that were removed.

Further information and counselling should be given directly to the families, who have been caused great distress. The hospitals involved should develop an outreach programme to enable them to assuage the suffering. The families must be given answers that will lay to rest their fears. We need not wait for legislation in Great Britain. The medical profession has said in its defence that its actions were custom and practice. Most of custom and practice is prescribed by legislation, so why would we need legislative changes? The practice could change today or tomorrow; the key matter is the ethics. The situation was created by arrogance and disregard for the rights of the bereaved parents or relatives at a difficult time for them.

Anyone who has experience of attending a hospital when someone has died will know that it is difficult for consultants or doctors to ask for permission for a post- mortem, a biopsy, an autopsy, an organ transplant or organ investigation in such circumstances. Nonetheless, our society demands that it should be done, as it is the only way of protecting the health of others. I am no psychologist, but at least some of the pain of the immediate bereavement could be assuaged if the family knew that the death was making some contribution to future betterment. People would understand, if it were explained to them. However, what I resent is the arrogant attitude of ignoring the patient and relatives, which created the situation that has been exposed.

Will the Minister consider having an inquiry, following the Chief Medical Officer's investigation, to reassure the public that what happened took place in a specific context, that it is not happening now, and that there will be new guidelines on the matter? People will not get that reassurance from a piece of paper that has been handed to them in a hospital at a traumatic time.

We need an openness that will be of benefit to the future. In those circumstances, and with such a modern understanding of the need for organs to be used for all the reasons I gave earlier, I have no doubt that many parents and relatives will donate their children's organs, not gladly, but with an understanding of the need for them.

I ask the Minister to consider in her response, or at a later time, whether the terrible trauma - and it is increasing, not decreasing - can be better assuaged by the introduction of some inquiry, in the fullness of time, which will expose what has happened and what the new regime will be.

I support the motion, and I compliment Mr Shannon for bringing it before the Assembly.

I support the motion. I thank Mr Shannon for bringing this timely issue to the Assembly.

I understand, as many people do, that in order to advance medical research it is necessary to use donated organs. However, the important words here are "donated organs". It is a scandal of the highest degree that for 50 years medical staff at the Royal Victoria Hospital have been guilty of removing and retaining babies' organs without the prior consent of the parents. The shock waves that have followed that announcement on 12 January still reverberate around the Province. Like many others in Northern Ireland I believed, wrongly, that it was against the law to remove organs without a signature of consent by the child's parent or parents.

This announcement could have far-reaching consequences. In future, many bereaved parents will refuse to give their permission for doctors to remove organs because of this recent disclosure. Hospitals that have followed correct procedures in obtaining organs could also suffer.

The mental anguish of losing a baby is just too horrible to contemplate. Adding to that anguish the news that organs from the dead baby were removed without prior knowledge or permission is bound to bring fresh waves of grief and despair to the many unsuspecting - until now - parents.

Let me give you an example of the impact that the news has had on one couple who contacted my office and related their experience. Their child died in 1993. The parents were asked whether they wished to bury the baby themselves or leave the arrangements to the hospital. The family, in its grief, gave permission to the hospital to arrange the burial. In 1995, a member of the family - still grieving over the loss of that child - went to the cemetery to see the grave where they believed their child was buried. They discovered that there was no record of the child being buried there.

When inquiries were made, it transpired that the infant's body was still at a hospital other than the Royal. When the parents asked why this was so, they were told that the paperwork had been lost for some time. There was also the excuse that, due to the security/political situation in Northern Ireland at that time, a number of bodies were being handled and so the baby remained at this hospital. The parents eventually took possession of the baby's remains and the baby was buried in 1995 - two years after its death.

Now, because of the news and publicity surrounding Alder Hey in England and the Royal Victoria Hospital's admission of organ retention over a period of 50 years, those same parents were once again thrown into turmoil as they wondered if their dead child's organs had been removed also. After lengthy enquiries and few answers, they were eventually told that the organs had been removed at the time of the post-mortem in 1993. When the parents asked where the organs were, the hospital admitted that it still had them. The hospital asked the parents whether they wanted the organs back for burial or would prefer the hospital to deal with them. Déjà vu.

No one here can begin to imagine the trauma that this family has experienced - not once, but twice - since their child died. The disregard for the family's feelings beggars belief, and surely Members will agree that no one should ever have to go through such a nightmare again. For that to happen, the Minister must take steps to identify how many other hospitals have been guilty of the practice of removing organs from dead babies without the written consent of the parents.

The Minister's recent directive to halt the practice must be strictly monitored, and swift action must be taken against those who might persist in this callous action. The Minister must ensure that all parents and relatives affected by the recent announcement are informed and offered immediate counselling, should they need it. To do anything less would be adding insult to injury. We have a duty to protect the rights of parents to choose whether they wish to donate the organs of their dead children, to respect that choice and to strictly adhere to it.

The investigation initiated by the Minister must be thorough. She must discover how many other hospitals have been carrying out this practice; how many babies were involved; what lessons can be learned; and what ongoing changes need to be made to the procedures for governing the removal and retention of organs.

I support the motion.

I too support the motion. It is such a sensitive issue and, it is unfortunate that we have to debate such an issue in the Chamber today.

On first hearing of the scandal at the Alder Hey Children's Hospital, Liverpool, which Mr Shannon described as the systematic harvesting of children's organs - that sentence alone was a dreadful indictment of a caring organisation - it was so far away from us, and we gave it scant attention. We did not give it the attention it deserved. It was only when we heard the news that the Royal Victoria Hospital had, for the last 50 years, retained organs of children that we began to sit up and take notice.

Although I have worked at Altnagelvin Hospital for many years, I still feel that the Royal Victoria Hospital is my alma mater, and I know of the good work that has been done there throughout the years, particularly during the troubles. Today, while I do not feel defensive, I do feel a certain reluctance to criticise something that happened in a hospital that I know gives such care and attention.

However, it is indefensible that parents who lost a child should be put in such a traumatic position today. It is indefensible that parents were led to believe that they had buried the complete remains of their child, only to discover - perhaps nine years later - that that is not the case. It is indefensible that they had to go through the trauma once again of opening a grave for the reburial of a child. Regardless of what we say or do here today it will be very difficult to advise those parents that what happened to their child was in their best interests - if that is what is now being said.

I understand that the hospital has put out a second statement. We accepted the first statement in good faith, but the second statement informed us that the organs of 15 children had been retained and that the families had been contacted. That was the least that could have been done. At least it was done before the media announced that organs had been retained.

Those families have been placed in the invidious position of wondering whether they have been advised fully, or if there are other things that they do not know. They have been told that the organs were retained purely to establish the cause of death. It is difficult to understand why they were kept for over nine years if not for research or commercial purposes. That is why we must ask the Minister to establish exactly why the organs were retained. Why do we need to retain organs to establish the cause of death of someone who died nine years ago?

That is poor consolation for the parents who grieved at the time, and who grieve again. Having worked in the hospital for many years and witnessed children die on an operating table, I know that it is a terribly traumatic time for the staff also. At times such as these, people do not take in what is said to them. A period of time must be allowed for grieving before they can be approached and told what has happened. Sometimes that is not possible because of our custom of burying our dead. However, some time should elapse before people go through the trauma of being asked if a post-mortem can be carried out.

We are talking about the post-mortems which are carried out by a hospital, rather than by a coroner - they are entirely different. If organs are retained during a hospital post-mortem, we are not aware of it. In this instance, we must ask for answers, and I thank Mr Shannon for proposing the motion. When I first saw the debate listed, I did not think that the issue affected us in Derry and in the north-west, because it had not happened there. Unfortunately, however, it has happened. We really need to know if Altnagelvin Hospital and the Royal Victoria Hospital are the only hospitals involved. Are there others which have not come clean? We need those answers.

I support the motion, and I ask the Minister to do everything she can to implement the recommendations that are now so urgently needed to reassure both parents and the public.

Go raibh mait agat, a LeasCheann Chomhairle. I thank Mr Shannon for proposing this motion. It is timely, and I congratulate him.

The issue that is central to the motion is consent. Once that matter has been resolved, everything else will be peripheral. It is good to see that the emotive element has been kept out of this debate. Consent ought not to be tied up with the emotion that it could engender.

We should also pay tribute to the system of voluntary organ donation, and we should not allow that to be confused in the public's mind with what has been happening for several years in some, or perhaps all, of our hospitals. Bad as things are, what happened here is not comparable with what happened at the Alder Hey Hospital.

I am not qualified, but I assume that there are three steps - removal, retention and the very noble matter of transplant. There is then the matter of the post-mortem and the autopsy. These are all tied to the subject being discussed, as is the difference between research and diagnosis. In certain circumstances there must be a diagnosis. Dr Claire Thornton said in her statement that it is very important to have a post-mortem to find out why a baby died, because there are implications for the rest of the family.

Those are positive steps. However, the issue of consent is central. I rang Dr Thornton this morning to give her a chance, in fairness, to indicate her feelings about the situation. I was not speaking to Frankenstein. These are people who, within the parameters in which they work, have made a very sincere effort to explain what happened over the years. To return to Dr Thornton's statement, I was not aware, until she informed me, that one of the organs dates back to 1944. The senior consultant confirmed that the hospital still has 361 babies' organs - mainly hearts and brains - in a secure store.

In all cases the organs were removed without the consent of the parents. It is good that the people who were there are beginning to admit that those acts were carried out without the parents' consent.

Dr Thornton also said that they felt that any baby was a little person and that all babies should have the same respect and dignified end. With regard to Mr McGrady's comments, if people at that level can retain such an outlook and such a respect for a baby, we are on the way to ensuring that such activity will not happen again.

I thank Mr Shannon for introducing the matter. Most of what needs to be said on the issue has already been said.

I would like to mention the issue of post-mortems. For example, if someone is killed, accidentally or otherwise, on a Friday or Saturday, it is possible that no forensic pathologist will be available to perform the post-mortem because they will be very busy. In my constituency, an 18-year-old girl was killed on a Friday night and her body was not released until the following Monday. That is a traumatic experience, and we ought to look at the issue. It is perhaps outside the ambit of today's discussion, but we are talking about trauma, difficulties, suffering and bereavement.

I support the motion. If we can solve the central issue of consent satisfactorily, everything else will fall into place.

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