Northern Ireland Assembly
Monday 29 January 2001 (continued)
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Mr O'Connor: I support the motion in the name of Mr Shannon, and I thank him for tabling it. I appreciate the need for sensitivity in dealing with this important matter. Many Members have already discussed organ donation, but that is not what we are debating. The parents of those children did not donate their organs; the organs were taken without consent. To take something without consent is to steal - some may feel that that is strong language, but it is a fact that the law determines theft as the taking of property belonging to another without that person's consent. Why should doctors be above the law? It may have been custom and practice, but custom and practice is not the law and is not necessarily right. In regard to full disclosure, I appreciate Mr Ervine's point that there may well be those in our society - perhaps people who are old or infirm - who do not want to know about cases that date from over 50 years ago. Mrs Iris Robinson recounted an incident that occurred in her constituency. I can touch on a case that happened in my constituency, where a baby girl was born in 1954 and died shortly after birth. Her mother, having been told by the hospital at the time that it would take care of the burial, died in 1979 not ever knowing what happened. That woman carried to her grave a suspicion that something was not right. People need to be made fully aware of what documents they are signing and what the implications are. There can be no repetition of the cases in England where people were told that a baby's tissue sample was being taken, only to find that the baby's heart and lungs were retained. Most people in our society get comfort from the fact that if a loved one dies he or she receives a Christian burial. If something like this happens, we cannot begin to contemplate the trauma inflicted. 5.15 pm We must deal with this issue with the degree of sensitivity it warrants. We need a statement from the Minister that this has not happened in other hospitals in Northern Ireland. This has come right onto our doorstep, and people throughout the country are now worried that similar retention has happened in their local hospitals. The public needs to be reassured. On the question of full disclosure, I appreciate that some people might not wish to know about that, but for those who do, the information should be made available. They should be given whatever help or counselling is required to ensure that they can fully recover from the tremendous grief they have suffered. I support the motion. The Minister of Health, Social Services and Public Safety (Ms de Brún): Go raibh maith agat, a LeasCheann Comhairle. Ar dtús caithfidh mé buíochas a ghabháil le Jim Shannon as an díospóireacht thráthúil seo a thionscnamh. Ceist í coinneáil orgáin páistí, agus go háirithe saincheist thoiliú tuismitheoirí i ndiaidh scrúdú iarbháis, a bhaineann leis an Teach seo, agus is ceart go mbaineann; is ábhar mór imní í do na teaghlaigh lena mbaineann agus don phobal i gcoitinnne. Le linn na díospóireachta chuala mé sonraí teaghlach ar chuir foilsithe gur coinníodh orgáin gan fhios dóibh agus gan chead uathu go mór leis an bhrón phríobháideach a d'fhulaing siad nuair a cailleadh páiste dá gcuid. Tá an tráma seo os comhair cuid mhór tuismitheoirí. Ní amháin go gcaithfidh siad cuimhní pianmhara a athbheochan, ach caithfidh siad an dara tórramh a bharraíocht. Caithfear aghaidh a thabhairt ar an ábhar seo le tuiscint agus le hoscailteacht. Ní bhaineann an t-eolas gur le dea-rún agus chan mioscais a coinníodh orgáin páistí nó gur gnás coitianta é SSN seo a dhéanamh gan chead tuismitheoirí, ní bhaineann sin de bhuaireamh na ndaoine ar bhain seo leo. Tuigim gur glacadh leis san am a chuaigh thart, agus leoga go dtí le deireannas, nuair a thoiligh teaghlach le scrúdú iarbháis ospidéil go gcuimseodh sin coinneáil fíocháin agus orgán iomlán i dtosca áirithe. Bhí an gnás seo coitianta ar fud na SSN ach is léir nach bhfuil sé inghlactha agus gur cúis mhór buartha é. Caithfidh mé a rá go soiléir agus ar taifead go bhfuil coinneáil orgán gan lántuiscint agus toiliú dearfa na dteaghlach lena mbaineann iomlán doghlactha. Agus mé ag tabhairt aghaidhe ar an ábhar seo, ba é na teaghlaigh lena mbaineann mo phríomhchúram. Is é mo thosaíocht a chinntiú go bhfaigheann siad an t-eolas agus an cuidiú atá de dhíth orthu go gasta agus go tuisceanach. Tuigim gur chuir na hospidéil iomchuí socruithe speisialta teagmhála ar bun agus go bhfuil siad ag tairiscint comhairliú agus tacaíochta eile mar is gá. Tá coinne agam go ndéanfaidh siad gach ar gá le baint den strus atá ag teaghlaigh sna tosca deacra seo. Tá sé tábhachtach go bhfaigheann teaghlaigh an t-eolas atá de dhíth orthu go gasta agus go dtugtar aghaidh láithreach ar cibé ábhair chúraim atá acu agus ar cibé éiginnteachtaí atá orthu faoin mhéid a dúradh leo. I thank Jim Shannon for initiating this timely debate. The question of the retention of children's organs and the issue of parental consent in regard to a post-mortem are matters that rightly concern the House. It is a matter of great concern to the parents involved and to the general public. In the course of the debate I have heard details of families whose private grief at the loss of their children has been compounded by revelations about organs being retained without their knowledge or consent. Those are harrowing stories. Many parents face the trauma of not only reliving painful memories but having to cope with the prospect of a second funeral. The matter needs to be approached with sensitivity and openness. The knowledge that the retention of children's organs was undertaken with good intentions, not malice, and that the practice of doing so without express parental consent was common practice in the NHS does not diminish the anguish of those affected. Indeed, as Mr Ford said, attempts to mitigate the trauma have ultimately increased that trauma. My understanding is that in the past, and until fairly recently, consent given by the family for a hospital post-mortem was taken to include the retention of tissue and whole organs in certain circumstances. That was common practice throughout the NHS, but it is clearly not acceptable and has caused much distress. I must state clearly, and on the record, that the retention of any organs without the full understanding and explicit consent of the families concerned is unacceptable. People need full and open information and explanation. My first concern in regard to the matter has been for the affected families. My priority has been to ensure that they obtain the information and help that they need, promptly and sensitively. The hospitals concerned have set up special contact arrangements and are offering counselling and other support, where required. I expect them to do everything necessary to minimise the stress experienced by families in those difficult circumstances. Mr Shannon, Mr J Kelly, Mrs Courtney and other Members referred to parents' need for - indeed, right to - full information. It is important that families now receive the information that they require quickly and that any concerns or uncertainties about what they have been told are addressed immediately. I welcome Mr Gallagher's emphasis of the need for local support for affected families, particularly those not living near the hospitals. He spoke of the support that Sperrin Lakeland Health and Social Care Trust provided for families in his constituency. I am determined to ensure that our health authorities collaborate to support the affected families. That must include firm arrangements to assist families living at a distance from the hospital in question. Mr Shannon asked about the timing of the RVH announcement. That was dictated by the reconciliation summit that had taken place in London the previous day, which led to a specific enquiry from the media to the hospital. As a result, over that weekend the hospital put in place arrangements with Dr Claire Thornton to deal with the many calls from parents who had gained the information in a way which caused great distress. As soon as the issue emerged, I set up an immediate departmental investigation. I aim to establish the exact position of each of our acute hospitals. That work is continuing as a matter of urgency. The current assessment is that around 400 individual children's organs have been retained since 1944. The Department's investigation continues and I will keep the House informed of the latest situation. The organs have been retained primarily at the Royal Victoria Hospital and at Altnagelvin. That hospital is in direct contact with the 15 families affected. The state pathology service has also retained some organs following post-mortems conducted under the Coroners Act (Northern Ireland) 1959. Some are held at the Royal Group of Hospitals and have been included in the census of retained organs there. Others are held by the state pathologists outside the hospital service, and I have no information on those organs. I will ensure that when I establish the full facts, as I have set out to do, Members, families and the wider public will be made aware of those facts. I am informed that the regional paediatric pathology service, based at the Royal Group of Hospitals, revised its working practices in 1999 and that the changes introduced were underpinned by the Chief Medical Officer's interim guidance issued in March 2000. Copies of the interim guidance, the current consent form of the regional paediatric pathology service and an accompanying explanatory booklet have been placed in the Assembly Library. While public concerns to date have understandably focused on children's organs being retained, similar practices have occurred with adult organs in the past. To establish the situation, I have asked for detailed information about the retention of adult organs in the North. I am clear that absolutely no organs should be retained by the Health Service without the explicit and informed consent of the family of the deceased. That is essential. I have received assurances that all post- mortem examinations now carried out are in accordance with those guidelines. This means that proper informed consent to a post-mortem must be obtained, with parents given explicit explanation in regard to the removal and retention of organs as part of the consent process. Any organs that are retained following consent are subsequently either returned to the family or otherwise handled according to their wishes. Information provided by the hospitals indicates that, for those organs being retained by the hospital service, there is appropriate documentation and organs are sensitively stored. Mr McGrady asked whether an inquiry should be set up subsequent to the departmental investigation that I have already launched. I am still establishing the full facts concerning the retention of organs without informed consent and I will take whatever steps are necessary. I am determined to move quickly to repair the damage done by former unacceptable practice and to ensure that such practice cannot reoccur. At this point, I am ruling nothing out. I assure Members that I will be taking careful account of their comments this afternoon. I believe that the investigation that I have commissioned will cover the ground highlighted by them. Mrs Robinson, Mr McFarland, Mr McGrady and others talked specifically about the need for a change of practice. I absolutely accept that any change must include the requirement for informed consent. I am committed to taking whatever steps are necessary to honour parents' wishes regarding the organs being retained at present. I will expect the hospitals to deal with all inquiries promptly and sensitively. I also expect hospitals to review their arrangements for responding to parents' enquiries and to establish a mechanism for addressing any problem identified by parents. Before reaching any decision on the necessary actions - which may include changes in current legislation - it is important that I be in possession of the full facts. I have outlined how I am setting about that process. I also want to benefit from seeing the report being prepared by Dr Liam Donaldson, Chief Medical Officer in England, offering guidance on the handling of the 40,000 organs retained in NHS hospitals in England. It is difficult for us now to understand how the practice of removing tissues and organs from children without parental consent developed. However, I am advised that our paediatric pathology service is now working closely with parents and clinicians in this regard. I will give careful consideration to the many points emerging from today's debate in determining the way forward, along with the information emerging from the departmental investigation and from the report by Dr Liam Donaldson. I reiterate that at this point I am ruling nothing out. One of the key issues to which Members returned many times in the debate is that many parents coping with the loss of a child have not been given the full information and explanation. 5.30 pm Indeed, as Sue Ramsey and David Ervine said, many parents coping with the loss of a child may have given consent for the removal of tissue and organs in the knowledge that others would benefit. However, as Members said, the point is that they were not asked. They should have been asked; they must be asked. The death of a child is a traumatic experience for a family. We are under obligation to deal sensitively and comprehensively with the question of organ retention to ensure that proper respect is afforded to the wishes of the families affected. In doing so, we must work in partnership with parents and not take them for granted as has happened in the past. The interim guidelines that were issued, copies of the consent form and an information booklet have been placed in the Assembly Library. Members will be able to see how that is currently being handled. With regard to legislation, I want to see what emerges from Dr Liam Donaldson's report and the departmental investigation before progressing. I am absolutely committed to ensuring that the legacy of past practice is carefully and sensitively dealt with. Future arrangements covering post-mortems and organ retention must be open and transparent. Future practice must be based on the principle that informed parental choice is paramount. No parent should be left in the position that so many find themselves in today. My Department and, I believe, all sections of the Health Service are now committed to taking the necessary steps to ensure that this is what happens. Mr Shannon: I thank Members for their honest contributions to the debate - it was conducted in a fair manner. Members made valuable comments, and all were able to tell a story from their constituency that clearly illustrates where the system has fallen down. The theme evident in all the speeches is that there is need for criteria and a system that is suitable for today's modern society. Mr Ford discussed that, as, I belive, did every Member who spoke. Iris Robinson provided the illustration of parents who lost a child. The hospital was meant to bury the child, but the family discovered that it did not, and they had to bury the child two years after the death. That shows that the system was cold, unfeeling and unaccountable. Perhaps, the Minister and the Health Department are today providing some commitment to important changes. Mr McGrady showed that the old practice did not finish years ago by stating that organs were being retained in May 2000. The Member also illustrated, as did I in my contribution, that Altnagelvin Hospital issued one statement in which it said that it only retained a brain and a spinal cord, but it subsequently emerged that it had retained 15 organs from children. This shows that the system is not, and has not been, accountable, at least until now. We want openness, and a commitment has been given along those lines. We need to learn the lessons that have been raised in today's debate. We also need to learn from what has happened at the Royal Victoria Hospital and Altnagelvin Hospital and to know why the state pathologist is retaining organs. We welcome the inquiry, the investigation by the Department and the fact that the Department has decided that it is necessary in order to address people's concerns. People need to feel that the issue has been addressed. That is vital to the constituents who are represented by every one of us who spoke today, and many others who were not able to speak. The consent process is essential - people must feel that they are part of it and must not feel ostracised by it. The Department is starting to address the fact that many people should have received counselling and did not. I know that the people who came to me needed counselling. They shed real tears, even though the twins were lost 19 years ago - the loss was just as real as it was on the day that they died. Counselling is needed, not just for them but for everyone affected. We want an assurance that the findings of any investigation will be made known to the Assembly. We are looking for that assurance from the Department so that, whatever investigation or inquiry takes place, we can see what happens and that it is acted upon. We all want to see that. That is where we are coming from. The change of practice on informed consent was also mentioned. We welcome that as a very satisfactory way of making progress. We need a strategy that will take all our concerns on board so that we can tell our constituents that we have achieved something: that there will be an investigation, that it will be acted upon and that this will never ever happen again. The theme of this debate has been parental consent. It is crucial that they feel part of the process. They have not done until now. Those parents whose children's organs were removed were never asked for their opinion. They were never asked "Would you agree to it?", "Is it all right?" or "What is your opinion on it?". They were ignored; they were never asked. They still feel the trauma, pain and emotion of what happened. The Minister said that the Health Service is committed to providing a new or better service. That is something that we all wish to see - a better and more accountable Health Service that every one of our constituents can feel part of. It is important that they feel that it represents them and their concerns well. The Health Service has let them down. It is time to address those issues fully to meet the interests and demands of the people whom we represent. That is a way forward. The Minister also mentioned a review of the system for dealing with parents' enquiries. One of the aspects that always grieves me, and many other elected representatives, is that the inquiries that we ask for are not always carried out as we would like. There will be a review of that - and we will hold the Minister and the Department to that - and we will have a better system at the end of it. If we achieve that, at least we will have made progress. Our thoughts at this time are with all those parents who have had to go through trauma and emotional pain. I ask Members to support the motion, because that is the will of the people that we represent. Question put and agreed to. Resolved: That this Assembly notes with concern the announcement on 12 January 2001 by the Royal Victoria Hospital, Belfast, that the organs of deceased children have been stored without parental consent during the past 50 years; and calls on the Minister of Health, Social Services and Public Safety to outline the measures she will take to alleviate the distress caused to the families of the children concerned and to confirm that this practice was not carried out at other facilities in Northern Ireland. Adjourned at 5.40 pm. |