Organ Donation (Deemed Consent) Bill — House of Commons, 2018-02-23
Topic: Health
Cheryl Elise Kendall Gillan (Conservative, Centre-right): Thank you very much for calling me to speak so early in the debate, Mr Speaker. I add my congratulations to the hon. Member for Coventry North West (Mr Robinson) on the compassionate way in which he introduced his Bill, and on bringing it before the House. I hope that I am not assuming too much when I say that I think there is good support for it on both sides of the House. More importantly, I believe that the Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), who will be speaking from the Front Bench today, will also be giving it her support. For me, this is a bit like déjà vu, because I went through all these arguments back in 2010 when the Welsh Assembly was looking at introducing what finally became the Human Transplantation (Wales) Act 2013, which took effect in 2015 The permitting of a system involving deemed consent is quite a complex concept. To be truthful, it received many objections from a large number of people in Wales at the time, on a large number of grounds. I was approached by the Kidney Wales Federation, which did a fantastic job, along with a lot of other organisations, in lobbying politicians and explaining the position of families who were waiting for organs and families who had been approached to donate the organs of a deceased relative. The debate got quite heated at times, and it also gave rise to a lot of myths. Looking at the evidence, I have always found that the medical profession and others surrounding bereaved relatives, or those who are about to become bereaved, have handled these matters with great sensitivity and achieved good outcomes. Indeed, the legislation in Wales still permits families to withdraw the so-called deemed consent, which means that their views can be taken into consideration. That is extremely important. One thing I looked at was the success rate of the 2008 organ donation taskforce, which helped to increase donation rates greatly in the five years of its operation. There was a 50% increase in donors and a 30.5% increase in transplants, which are impressive statistics. At the time, I was exceedingly worried that, by introducing controversial legislation, we might do damage to a campaign that was yielding positive results—that needs to be taken into consideration The truth is that there are more people on the donation list than there are organs available. For many people in this Chamber, and beyond, it is worth noting that there was a particular problem in the black and minority ethnic population because, in those days, 23% of the people waiting for organ donation were from the BME population and only 1.2% of the people on the register were from the BME community. That huge discrepancy and disparity caused a lot of aggravation I was unsure about the legislation in Wales, but I am pleased to stand here as a politician and openly admit that I have changed my mind. There is no disgrace in that—when the facts change, I change my mind, which is important. One reason why I changed my mind is that I have a dear friend who, for the purpose of this debate, I will call Jane. I have known her son since he was born, and I will call him John John has primary sclerosing cholangitis, a chronic liver disease whereby the bile ducts, the passages that carry bile from the liver to the intestines, become blocked and narrowed by inflammation, so scar tissue builds up and the liver itself stops functioning. The symptoms can include tiredness, aching, itching, pain in the abdomen, jaundice, chills and fevers. The progression of the disease, although highly variable, usually leads to one conclusion—that the patient needs a liver transplant John has been told that, because of the shortage of transplants, he has to be in cirrhosis before he can be put on the list, and then he will have to wait for a match. By that time, he may not be well enough to have a transplant. I am close to the family and have seen the effect on them. Jane wrote to me: "This has obviously affected the whole family. John still lives with us at 25, and we are, in fact, his carers in some respects, as we know he will only get worse in time. We do not know how much time he has, and he cannot plan for his future. As well as physically, mentally it takes a great toll on him, as he does not know if he will get a transplant when he needs one. Organ donation would help a great deal in this." When you have a friend with a boy—he is now a man, and he is a highly intelligent and wonderful human being—in that position, you have to reconsider where you stand on such legislation The Bill will not be enough in itself, but it will do absolutely no harm and it will again stimulate a debate. If the Bill continues to be accompanied by campaigns to encourage people to register and to donate, it will help to raise awareness, which will help to increase the statistics, as we did in the first five years following the organ donation taskforce We are all living longer, and if we in this House can prolong the life, and improve the quality of life, of people such as John who suffer from rare diseases, we should do so. I will give this Bill a fair wind. Obviously the devil will be in the detail, and we will need to consider the Bill carefully. I would like us to consult, and to learn from the experience in Wales, because there will be a lot to learn—Wales has forged the way. I do not want a hard system, as in Austria—that is not what I envisage. I want this whole area still to be surrounded by the care and consideration of the medical profession, and I want the latitude that allows families and people with genuine reasons not to participate, but I want to see increased numbers of people on the register. I want to see increased organ donation and more lives saved. I give the Bill a fair wind.