Organ Transplants

Kerry McCarthy Excerpts

Tuesday 8th July 2014 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

Mrs Osborne, it is a pleasure to see you in the Chair, as always.

I thank the hon. Member for Strangford (Jim Shannon) for securing this debate and for raising awareness in the House of the desperate need to increase organ donation. I will focus on cystic fibrosis. As the Minister will know from an Adjournment debate I secured a few months ago, I have a nine-year-old niece who has CF. Thankfully, she is in pretty good health at the moment, but as a family we obviously live with the knowledge that her condition is likely to deteriorate, particularly as she gets into her 20s.

In that Adjournment debate, I spoke about the excellent CF centres that we have in Bristol for children and adults with the condition, and one of the key things that I discussed with people when I visited Bristol’s adult CF centre was the desperate need for lung transplants. Thankfully, life expectancy for people with CF is increasing; it used to be very much a childhood disease, as people with CF did not survive into adulthood. However, it is still a life-limiting illness and most of the 10,000 people with CF in the UK will need a lung transplant to extend their lives.

CF is the third most common reason for lung transplantation and CF patients have the best survival rate among those who receive lung transplants, with 60% of them living for at least another five years and some for much longer. Obviously, given medical improvements, the situation is getting better all the time. The Cystic Fibrosis Trust gives the example of 43-year-old Vicky Petterson, who was successfully given a transplant when she was 28, enabling her to watch her son grow up and to celebrate two decades of marriage. A lung transplant is not a cure for CF, but it can give the recipient and their family the priceless gift of more years of life.

Generally, there are about 60 people with CF on the transplant waiting list at any given time. On average, they will be on the list for 412 days, and it is quite shocking to compare the UK’s statistics in this area with those of some other countries. In Austria, the average wait is 107 days; in France, 110 days; in Spain, 180 days; in Belgium, 194 days; and in Germany, 244 days. The Netherlands is much worse than those countries, with an average wait of 594 days, but the UK figure is one of the worst in Europe, with an average wait, as I said, of 412 days, which obviously puts a huge strain on patients waiting for transplants. While they wait, their condition will deteriorate quite significantly; many of them will become dependent on oxygen and will have to spend most of the time they wait in hospital, as they require intensive treatment. Usually, they would not be expected to live for more than two years without a transplant, so a clock is ticking as they wait for the call about a transplant coming through.

A few months ago, the case of Matt Lodge was reported in The Bristol Post. Matt was 23 and had done pretty well throughout his time at university, but then his condition had suddenly deteriorated. While he was waiting for a transplant, he always had to stay within four hours of Birmingham, so that he could be ready to drop everything and go there for a transplant. One night, he received a phone call at 1.30 am to tell him to go to Birmingham. He obviously headed up there, only to be told that there had been a mistake and his blood type was not compatible with the donor organ, so the operation could not go ahead. Several months later, he is still on the transplant waiting list; we can only imagine how traumatic that must be for him. It was very brave of him to have gone public with his experience and to use it to support the opt-out campaign and to try to encourage more people to come forward as donors.

As the hon. Member for Strangford said, the Cystic Fibrosis Trust is campaigning to maximise the use of organs. The trust’s “Hope for More” campaign has already been mentioned, as has the national transplant week’s “Spell it Out” campaign.

Some 32% of the UK population—just over 20 million people—are registered at the moment, but it is important to note that lack of registration is not necessarily a problem, because fewer than a third of donors would have been registered in the first place. The biggest issue is consent. The CF Trust reports that the UK has one of the highest rates of family refusal in the western world. Obviously, it is difficult for families to face such a big decision when they have just lost someone: they might feel that it is a violation of their loved one’s body or they might just not be ready to talk to doctors about such issues, particularly if the death has been sudden. That is why it is so important for people to discuss the issue with their families. It is one thing carrying an organ donor card or being registered online, but the best thing people can do is tell their family in advance that they would want that done, because then the decision is much more straightforward.

The hon. Member for Strangford talked about resizing—downsizing—lungs. The “Hope for More” report details ways, including resizing lungs, to reduce the time that people spend on the waiting list, other than just increasing people’s willingness to be donors.

Just 23% of donated lungs were successfully transplanted last year. Some of those not used may have been clinically viable, if only certain procedures could have been followed. As the hon. Gentleman said, the CF Trust is concerned that the criteria used to assess whether a lung is safe and to designate “extended criteria lungs” may not reflect current scientific knowledge because those criteria were mainly developed 30 years ago and need bringing up to date. The trust’s report accordingly calls for a

“renewed focus on understanding what lungs are suitable for transplant”

and for more transplant surgeons to be trained in downsizing donor lungs. As the hon. Gentleman said, only three people are trained to do that. Downsizing is particularly important for CF patients, as the hon. Gentleman also said, because they tend to be smaller than usual and cannot necessarily cope with average-sized lungs.

Techniques such as ex-vivo lung perfusion could be used to assess and potentially repair sub-optimal lungs. I understand it is still experimental at this stage, but the CF Trust reports that researchers suggest it could improve transplant rates by up to 30%.

The hon. Gentleman has obviously been well briefed by the CF Trust—I was listening to him, thinking, “Okay, cross those bits out”—so I will not go into too much detail about the national lung allocation system. However, as he said, lungs are allocated to the nearest transplant centre, which will assess the patients on its own list for the most suitable match. That would apply even if there were a patient in more urgent need on another transplant centre’s waiting list.

This year, NHS Blood and Transplant has developed a super-urgent group—some people will be considered a national priority and will be able to receive compatible lungs from anywhere in the UK. However, the CF Trust is keen for the measure to be rolled out and used anywhere. Of course, it is quite difficult to assess who is the most urgent case, but the issue needs to be looked at. As the hon. Gentleman said, there is already a similar system for heart transplants.

[Jason McCartney (Colne Valley) (Con)]

I, too, work closely with the Cystic Fibrosis Trust here in Parliament. I have hosted a number of events and have met people who have had lung transplants. The hon. Lady is right to highlight the UK’s average waiting time of 412 days, one of the highest in Europe. I lend my support to the CF Trust’s idea of a national lung allocation system, which could be a big step forward in reducing that waiting time and could make the use of those organs a lot more effective.

[Kerry McCarthy]

I understand that the hon. Gentleman chairs the all-party group on cystic fibrosis. I am grateful for his support.

My final point is about the importance of psychosocial support for patients preparing for and recovering from a lung transplant. It can be a stressful process, yet support is not commissioned as a demand-led service. The fact that lung transplants have been cancelled because patients did not feel psychologically prepared or able to go through with them, despite all the desperate waiting, indicates that more consideration needs to be given to psychological support and a more holistic approach to the whole process.

I hope today’s debate has underlined the need for a more joined-up approach across the board to improve organ donation. The issue is not just about registration and donation rates; it is also about innovation, to improve the availability and allocation of donor lungs. I look forward to the Minister’s response.