Organ Donation (Deemed Consent) Bill

Cheryl Gillan Excerpts

2nd reading: House of Commons
Friday 23rd February 2018 Commons Chamber

[Mr Robinson]

We would encourage that across the board. Although my hon. Friend draws attention to a vital area, it is only one of those that we hope to address. As I am sure he will understand, different issues seem equally important to those who are in other categories. I do not claim that my Bill on its own is a panacea for our problems, but I am convinced that it is a vital prerequisite to the imparting of a new impetus to the increase in organ donations that we know the country urgently needs.

[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

I congratulate the hon. Gentleman on the Bill, which I support. May I pursue the point made by the hon. Member for Rochdale (Tony Lloyd)? I believe that in 2016-17, after Wales had introduced presumed consent, 13 out of 33 families withdrew that consent when they were asked about it. Can the hon. Gentleman assure me that the Bill will allow room for relatives still to be consulted and to withdraw the consent? After all, it is being asked for at a very sensitive time. I want us to ensure that families are given that latitude, while trying to do everything possible to increase organ donation.

[Mr Robinson]

The right hon. Lady raises a difficult but important issue. As part of the soft opt-out, there will certainly be arrangements for families and close friends to express their opinions. It is interesting to note that in Spain, which has no register and operates what is effectively an opt-out system, there is always consultation with every family who can be reached in time in the absence of a register, and as a result of those consultations there is a tremendous rate of consent. It can, of course, work the other way as well, and the Bill will make full provision for that. It needs to be carefully worded, and I invite those with a particular interest to look at it, but the intention is to give families in that position an effective veto. I may not have fully picked up the point made by my hon. Friend the Member for Rochdale (Tony Lloyd).

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[Mr Robinson]

That is a very moderate intervention from the hon. Gentleman, for which I am grateful. He is probably looking at the recent remarks and quotes from the Nuffield Council on Bioethics, which relate back a year, if I am not mistaken, to 2016 or ’17, but we are now in 2018 and the situation has evolved. I recommend to him an article I have here in The BMJ; I will leave it out for him if he would like to read it. It gives a full account of the situation in Wales, and is very hopeful. But, as I have said, we are going to monitor this carefully, and we should be cautious, practical and realistic in our approach to the introduction of the system in the UK.

[Dame Cheryl Gillan]

May I give the hon. Gentleman some good news on Wales? The legislation in Wales was pioneering, and was much discussed when I was Secretary of State for Wales. I have been looking at the details of some of the statistics from Wales in the latest report on organ donation and transplantation activity data, and the hon. Gentleman will be pleased to note that back in 2013-14 some 1,005,213 people were opted into the organ donation register in Wales, while for the first three quarters of the years 2017-18 that number increased to 1,220,331. The fact that more people are opted into that register is very positive news from Wales.

[Mr Robinson]

It was because the figure was so low in 2013 that the Welsh Government decided to move to an opt-out system. I agree with the right hon. Lady, and disagree with those who, for some reason or another, will not look at the most recent facts and move with the situation that is developing. The situation in 2013 was bad, which the Welsh Government recognised and they then went for an opt-out system. Then there was a period of bedding-in and there appeared to be no change, but the most recent figures for 2018—as opposed to 2017 or ’16—are showing a marked improvement, and I am sure we can all rejoice at that. This is not a matter of trading economic figures across the Chamber; that is a sheer fact and one that I think we can all take great satisfaction from.

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[Dame Cheryl Gillan (Chesham and Amersham) (Con)]

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.