Health Bill [HL]

I say with confidence that everyone on the Cross Benches would wish to be associated with the words of the noble Baroness, Lady Barker, in sending condolences to the Minister. I shall start with two cases that outline the need for the amendment. Rachel Leake was registered on the transplant waiting list because of renal failure. Her daughter, Laura Ashworth, was on the organ donor register and had said that she wished to donate her kidney to her mum. Tragically, Laura died of a severe asthma attack, leaving her two year-old daughter orphaned, with her mother, who was on dialysis, to care for her. Laura’s organs were donated to three patients in the UK who were on the transplant waiting list, and consideration of donation to her mother was rejected, even though, in life, she had expressed a wish to donate and was even considering being a live donor. There was wide publicity about and outrage at our system that prevented a mother receiving an organ from her deceased daughter even though it was her daughter’s wish. Interestingly, if Laura had begun the live donor process, her wishes might have been respected, because we have different criteria for live and for dead donors. I shall tell the Committee about another case that had no publicity. A young man collapsed in the gym and was taken to hospital and into intensive care, where it was discovered that he had suffered a subarachnoid haemorrhage and was declared brain dead. The family was contacted. At that point, it was revealed that his father had died three months previously. His mother said that her other child was on the liver transplant waiting list and understandably asked whether the liver of the child who had been fit and well but was now dead could be considered for transplant to the child who was already on the organ donor transplant waiting list. She was told no. This woman had lost just about everything. She had lost her husband and her well son; she was losing her already ill son; and the little ray of hope that might have come from this tragedy was being put out. What does my amendment do? I should say, our amendment; I am grateful to other noble Lords who have put their name to this. It will allow a family member or close friend who is already on the transplant waiting list to be considered in the cross-match process for organ donation, if the family represent the deceased person’s wishes to donate an organ to that specific person. This amendment on preferential organ donation would also have to consider the suitability of the organ and, of course, the appropriateness of the cross-match process, as well as the needs of other patients on the waiting list. This is not directed donation. The family of the deceased cannot direct where the organ goes. We have an increasing problem in this country. The need for organs outstrips the supply. In 1954, the first kidney transplant was a revolutionary and complex treatment for organ failure; today, transplantation is the standard and preferred treatment for organ failure. Organ transplantation is cost-effective; the average yearly cost of dialysis is more than £30,000, while the cost of a kidney transplant is around £17,500. Let us not forget that the closer the tissue match, the lower the risk of rejection—so in related donors your chance of that organ lasting longer is much greater. Today there are 7,877 people on the organ donation waiting list, increasing at a rate of about 8 per cent a year. Last year, 1,000 people died waiting for an organ or after being too ill to withstand transplant. Such is the shortage of organ donors that this morning I had to amend my figures because, since last Thursday when I originally expected to speak, a further 30 people have been added to the waiting list for organs. I consulted widely on this amendment, including with Professor James Neuberger of NHS Blood and Transplant, the British Kidney Patient Association, the British Organ Donor Society and Professor Nadey Hakim, who was the world president of the International College of Surgeons, and others. All have been sympathetic to my amendment. The Minister kindly met me to discuss this amendment, and I thank her and the Department of Health most sincerely for those helpful meetings. She has also written to me, and I shall try to address some points in her letter. Before I do that, I should say two things very clearly. First, I reiterate that this is not directed donation and, secondly, it is not presumed consent. The current law seems to conflict with the spirit of the Mental Capacity Act guidance, which requires staff, when appropriate, to respect an advance statement of wishes and the processes for live donors and dead donors are at variance. That variance seems to be incompatible with the spirit of the Mental Capacity Act. In the helpful letter that I received from the Minister, she pointed out that the amendment recognises the need to ensure that others in urgent clinical need of an organ are not harmed, such as patients registered on the urgent heart scheme, liver patients registered as "super-urgent" and renal patients identified as highly sensitised. The amendment does not exclude any of those people from prioritisation. It is important to recognise that there is no objective test of prognosis, however. Some patients are put on the list late because the list is too long, so time on the list itself does not correlate to clinical need; it is only when you get very close to death that the prioritisation can be said to hold a degree of accuracy. Following a death, the family give or withhold consent for organ donation and that consent can subsequently be withdrawn. Consent becomes irreversible probably at the point of knife to skin of the recipient’s operation, although there is some dispute about it. It seems as if there has been one case in which it was deemed to be irreversible form the time when the organs were taken out of the donor’s body, so they were not repatriated. There does not seem to be a clear statement anywhere as to the point of irreversibility to withdraw consent. The Minister’s letter refers to "guidance" being needed, but rarely do we have sight of guidance before we legislate. It usually comes later, so I humbly suggest that the guidance and details of this could be written once the principle outlined in the amendment has been accepted. The letter also stresses the need for this to be "closely monitored", but monitoring procedures are already in place through the Human Tissue Authority, and all steps of the transplant process are registered subject to audit, evaluation and reporting, The devolved nations must be consulted and I hope that the Minister can tell us that this has happened and will inform the Committee of their response. Let me explain the practicalities of the amendment. A family is told of the reality of their loved-one’s death, and after brain-stem death consents to organ donation. The family says that there is a brother, sister or whoever already on the organ transplant list and that the person who has died expressed a wish to donate to that person in the event of death. The transplant team would explain that this relative could be considered along with others but that there was no guarantee because it will depend on the cross-match and the state of the organ, but that everyone will be kept informed. If another patient is moribund and in desperate need of that organ it would be discussed with the family, and if the family still consents to donate, the organ will be given on clinical need. It will be noted on the clinical record of the relative who did not receive the organ so that the family will still get something in return for their gift. The name of the person who did not receive the organ would be asterisked as having been closely in the frame but superseded on clinical need. Such situations would be rare but should help all groups in our population to understand that we want to support organ donation as giving the gift of life, not raiding their loved-one’s body for organs. Many people want to give the gift of life in the event of a tragedy. If they have another family member or close friend who is awaiting transplant is it right that their expressed wishes should be rejected outright, as at present? Currently families lose someone only to find that they cannot gain some good from that death by donating an organ to another loved one who is dying from the lack of a transplant. I should point out that donors often donate several organs, so it is only one that will go to the person who is named by the family. The other organs would go into the pool. It would be helpful if we could drive up donation rates. The Minister concluded in her letter that the Department of Health was actively considering a change in policy and saw real merit in the proposal. The amendment reintroduces discretion and compassion to clinical decisions for a family faced with the tragedy of a dead loved one who, through that death, has become a potential donor. On concerns that placing this in primary legislation might be too blunt an instrument, I can only say that death is a pretty blunt instrument, so how long will we have to wait and what will be the mechanisms to implement the change needed? If it is not primary legislation what will bring about the changes that we need to push up donation rates? If more detailed guidance is needed, who will write it and when? Will the Committee be informed when this has happened and how? The clinical community to whom I have spoken feel that it needs the discretion that this amendment would give. That community wants to know what will happen if the same situation arises at a weekend, or even next weekend. The organ donation situation is dire and cannot wait any longer. There have been enough committee reports. There is some important history. A family wanted the organ to go to only one ethnic group, which was deemed to be contrary to race relations. It was from that case that the decision was made that a family could not express any wish at all. I wonder whether that was gold-plating on a decision, with which I agree, that no one should be able to specify one ethnic group. A few other cases similar to the one that I outlined earlier have appeared over the years and have been referred to the transplant authority. Anecdotally it seems that compassionate decisions have been made and have not gone down the hard line, but the trouble is that it depends on whose watch such decisions are made. The key is the interpretation of any guidance. I suggest that people have become inappropriately rigid because no guidance can allow for every eventuality, but we must respect the wishes of the person who has died. I beg to move.