Organ Transplants

Jason McCartney 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.

--- Later in debate ---

[Jason McCartney]

The hon. Lady has just raised the campaign by the Anthony Nolan bone marrow trust—it is called Register and Be a Lifesaver. As the hon. Member for Stretford and Urmston (Kate Green) pointed out, there is still an issue when it comes to different ethnic backgrounds. As the bone marrow register has been mentioned, I want to point out that northern Europeans have a 90% chance of finding a bone marrow donor, but that figure falls to just 40% for people from black, Asian and minority ethnic backgrounds.

[Luciana Berger]

I was just about to come to the specific challenges of regional differences and of people from different communities having access to organs. To finish my point about the important campaign by the Anthony Nolan trust, as part of that campaign the organisation wrote to all MPs to encourage us to write to schools in our constituencies to inform them about the opportunity to have the Anthony Nolan trust come in and inform 16 to 18-year-olds about the chance to be a life saver. I want to put on the record that I strongly encourage other Members to write that letter if they have not already done so—I sent mine off only last week—because it is something that we can do as MPs to encourage people locally to get involved.

In response to the hon. Gentleman’s point about specific communities, the challenge, as we have heard from a number of Members, is not simply getting more sign-ups to the register but targeting specific communities and areas that we know are losing out from the stark inequalities in our system. In the north-west, for example, where my constituency is situated, patients are waiting longest for a transplant and we have the highest death rate among those who are waiting: 62.2% of patients in the north-west wait more than six months for a transplant, compared with an average for England of 47.3%. Some 23.2% of patients in the north-west have waited more than 18 months for a lung transplant, compared with an average for England of 15.8%. We need to take regional differences into account.

Many Members have referred to lung donation. My hon. Friend the Member for Bristol East (Kerry McCarthy) referred to the zonal lung allocation system, an important issue that I will focus on in more detail. The Cystic Fibrosis Trust has raised legitimate concerns about that system and is concerned about equity in lung allocation.

Currently the allocation of lungs to transplant centres operates on a rota system. When a donor becomes available, the organs are offered to the closest transplant centre if a matching recipient has been identified. If no suitable candidate is found, the organs are then offered to the next centre, as per the pre-agreed rota. The likelihood of getting a lung transplant and the time frame for the procedure will therefore vary according to where an individual is listed. A donated organ will not currently always reach the candidate most in need anywhere in the country. Will the Minister give her view on the zonal lung allocation system? Does she have any plans to develop a more needs-based system?

It is not just where someone lives that can affect their chance of having a transplant operation if they need one. People from BAME communities are up to three times more likely to need a transplant than others, yet, because organ matching is likely to be closer when the ethnicity of the donor and the recipient are the same, they have to wait much longer. For example, on average a person from a BAME community will wait a whole year longer for a kidney transplant than other patients.

The #Spit4Mum campaign to find suitable stem cell donors for a woman called Sharon Berger—I am not related to her—highlighted the specific challenge of finding suitable donors for members of the Ashkenazi Jewish community. I am a member of that community and I have done my bit to contribute to that specific campaign. But we know that there are many different ethnic minority communities that struggle to find donors of organs and stem cells.

Such inequalities are not acceptable. We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government will be taking to tackle it?

Many Members on both sides have raised their concerns about what more we can do to support families in honouring the wishes of their loved ones. It is very difficult when someone passes away, but we know that in 2011-12, 125 families overruled an individual’s intention as recorded on the NHS organ donor register to become an organ donor. Many people do not realise that if they have not made their donation decision clear, their family could be asked to agree to a donation taking place. Nobody wants to leave their family with such a burden, so it is vital that we encourage and support families in having those conversations earlier. The theme of the current national transplant week is “Spell it out”. Will the Minister outline what she is doing to promote that message further? There is a great disparity between those people who sign up and share their intentions with their families and those who do not, and there can then be issues with vetoing.

I will touch briefly on the issue of the opt-out or presumed consent system, which was raised both by my hon. Friend the Member for Bridgend (Mrs Moon) and by the hon. Member for Montgomeryshire (Glyn Davies). There are many obvious advantages to the system. I return to the point I made earlier: there is a gap between the 51% of the population who definitely want to donate their organs, the 31% who would encourage it and the 31% who have actually signed the register. The system will be introduced in Wales in 2015. Any change in legislation will need to take into account the impact of the system in Wales and must have the backing of the public. What consideration is the Minister giving to learning from the introduction of the system in Wales and to introducing a similar system in England?