Organ Donation: Opt-out System

Kerry McCarthy Excerpts

Thursday 13th July 2017 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is a pleasure to see you in the Chair, Ms Buck. I want to start by congratulating my hon. Friend the Member for Barnsley Central (Dan Jarvis) on not just securing this debate but taking the opportunity to raise this incredibly important issue at Prime Minister’s questions yesterday.

I am pleased to hear that my hon. Friend the Member for Coventry North West (Mr Robinson) will be introducing his presumed consent private Member’s Bill when he gets his opportunity on a Friday. I hope we will not see a repeat of the usual filibustering, which means we cannot have a proper debate and do not get the opportunity to vote on the Bill. It is really important that the House finally gets the chance to express its view on this matter, and that will not happen if the Bill is simply talked out.

I want to reiterate the concern that has been expressed about our not being on target to achieve an 80% consent rate for donation after death by 2019-20. We have missed the strategy’s interim targets every single year. More needs to be done to make a difference and to save lives. We have a moral obligation to do something, which in this case means introducing presumed consent. It is neither perfect nor a panacea for all the issues surrounding organ donation but, as we heard from my hon. Friend the Member for Barnsley Central and others who spoke in the debate, it would make significant difference.

A constituent contacted me today about her severely disabled son. She is concerned that he lacks capacity to opt out and she is worried that in the medical profession’s view some lives may be worth less than others. It is important to give people such as my constituent the reassurance they need, and that is not just about the right to opt out. As we have seen in Wales, where there is a soft opt-out procedure, families still get consulted. It is important to put people’s minds at rest.

Across Bristol, there are more than 182,000 people on the register, with more than 38,000 in my constituency. In March, 27 people in the city were on the active transplant list, 13 of whom were in my constituency. Last year, there were 10 deceased donors and 22 deceased donor transplants. At the moment, we are not quite keeping up with demand.

Cystic fibrosis is a subject dear to my heart, not least because my 12-year-old niece, Maisie, has it. It is a life-limiting illness that affects 10,800 people in the UK and most of them will need a lung transplant to extend their life and improve their quality of life. I want to take the opportunity, slightly gratuitously, to pay tribute to Maisie’s 14-year-old brother, Isaac, and her 17-year-old sister, Lilli, who did a 65 km—40 mile—walk across the Peak district the weekend before last to raise a few thousand pounds for the Cystic Fibrosis Trust. It was quite a trek.

The trust does brilliant work to raise funds and to support the families of people with cystic fibrosis, most of whom will need a lung transplant at some point. About 50 cystic fibrosis patients receive a transplant each year. It is the third most common reason for lung transplantation. Such patients have the best outcome, with 60% of recipients living at least five years after donation.

At any time, about 60 people with cystic fibrosis are on the transplant waiting list. Patients on the list are generally not expected to live more than a couple of years if they do not receive a transplant. One in three will die before they can receive one, so you will understand, Ms Buck, why it is important to me that we up the donation rate and make sure that lungs are available whenever possible.

The Cystic Fibrosis Trust does not see opt out as the only answer. I am sure the Minister knows that it has been calling for a national allocation system so that there is less of a postcode lottery and it is not just people who are fortunate enough to be in a place where lungs are available for transplant who get them. Last month, NHS Blood and Transplant announced that it would move from a regional system to a fairer national allocation system for urgent cases. The Cystic Fibrosis Trust has, of course, welcomed that.

Organ donation is complicated. It is not just a case of finding available lungs and a donor who wants them. According to the Cystic Fibrosis Trust, 75% of clinically usable donor lungs are not used. It wants more training for doctors because only three doctors in the UK can downsize lungs to make them suitable for smaller patients. It is often teenagers and people in their early 20s who have poor lung capacity and need new, downsized lungs. Will the Minister consider training more people to ensure lungs can be used?

Repairing sub-optimal lungs to make them suitable for transplant is also an issue. Spain has the highest organ donation rate in the world not just because of its opt-out system but because it has medically trained transplant co-ordinators, uses intensive care beds better and more frequently, has different admission criteria for its intensive care units and uses more high-risk donors.

I appreciate that we are talking specifically about presumed consent, but I want to ensure the Minister is aware of all the wider issues. I hope she will work on those as well as supporting the opt-out Bill.