NHS Specialised Services

Debate between Kerry McCarthy and Mark Tami

Thursday 15th January 2015 Westminster Hall

[Mark Tami]

I agree, and that is a fact that few people know. A white person has a 70% to 80% chance of finding a match. For some ethnic groups, the chance of finding a match can be as low as 30%. For those of mixed race, depending on what that mix is, it can be even worse. We need to do much more work in those areas to try to explain that. It is the same with giving blood, where there is also a problem. The two are connected, but there is a big problem there, and we need to do a lot of work on it. Transplants are also being used for sickle cell disease, which is an important area that has already been mentioned.

Many of the graft-versus-host issues appear during the early days, but that is not always the case. Flare-ups can happen many years later. Hopefully they will become less severe as time goes on, but we cannot say that they will stop at a particular time—100 days or any other arbitrary figure. GVH is not the only problem; most transplant patients will contract a series of infections due to their immune system being compromised as a result of the treatment they have to receive to ensure that the transplant is in the best position to take. Those infections might not prove particularly dangerous to the rest of us, but they could prove fatal to a transplant patient. In the longer term, secondary cancers are another issue that has to be faced. However, without the transplant these patients would not be alive even to think about such issues, so we always need to put matters into proportion.

We have talked a lot about the physical impact of a transplant, but the psychological effects are often ignored, and there is perhaps a lack of support. Transplants are a difficult process, particularly for children. My son was in hospital, off and on, for two years, which is a big chunk of a nine-year-old’s life. Even for adults, transplants are a major step. We need to do a lot more to address the psychological effects by providing better counselling. Some support is provided in hospitals, and I have experience of that, but once people leave hospital they have to search long and hard to get support. It is a fact that transplant patients have a higher rate of suicide than the rest of the public.

[Kerry McCarthy]

I visited the cystic fibrosis unit at Bristol, and one of the key problems for people from remoter, rural areas is accessing the ongoing support, or even the drugs, that they need. In the cities there may be a concentration of patients with the same illness or a unit that specialises in treating it, and one of my concerns about co-commissioning is that a CF patient somewhere in Devon or Cornwall will have very few other patients nearby. The problems that such patients already have with being remote from the hospitals that treat them will be exacerbated if there is a local element.

[Mark Tami]

I totally agree. Thankfully, not many people have these conditions, so particularly in rural areas, someone might be the only person with the condition, and accessing support may be much more difficult.

After the 100-day cut off it becomes far more problematic for both the patient and the health provider. The term “postcode lottery” has been mentioned a lot today, and it is certainly the case when accessing support. After such a traumatic procedure, a postcode lottery is the last thing that people need. We must move away from the arbitrary 100 days, which does not fit what the patient actually needs. We need a more flexible approach that focuses on the patient, rather than just some figure that we seem to think may or may not cover the majority of people.

Support should go arm in arm with a proper transplant pathway that addresses how we look after transplant patients after those 100 days, or whatever figure is used, for as long as necessary. I have always been struck by the fact that we spend a vast sum on each transplant on the medical and hospital side, probably hundreds of thousands of pounds by the time we finish, but when the patient leaves that environment, the level of support is very poor. We need a more joined-up approach, particularly for children. A few years ago I spoke in an Adjournment debate in the House on support for children who have had cancer and are returning to the school environment. I was shocked that there are no national guidelines on how we reintroduce children. It is a scary, traumatic process not only for them but for their classmates, particularly if they are very young. Their classmates might suddenly see a child they have not seen for a while looking very different. Some schools are very good and some are absolutely hopeless in the support that they give. I am going slightly off the subject but the Department of Health and the Department for Education must work together, rather than arguing about who is responsible for providing such support.

My last point concerns patients who have had a transplant but unfortunately have relapsed. A transplant is not an easy option, and it is traumatic enough, but when the transplant fails, perhaps a year or two down the road, the patient is faced with a bleak outcome unless another transplant is available. Indeed, when a transplant is first performed, a proportion of the cells will be kept to have another go, if I can put it in those terms, in the event of such an outcome. That will obviously apply only to a limited number of people, but for that limited number of people it is their only hope. In the past we have seen that a second transplant tends to go ahead because the number of people affected is not particularly vast, but in England a second transplant now has to be provided by the NHS England individual funding request process. I understand that in recent months a number of those requests have been declined. I also believe that NHS England does not intend to address the issue until April 2015 at the earliest, although it recognises that there is an issue. When it does, I do not know how long it will take to decide what to do or, indeed, what the outcome will be. That is unacceptable. It is not too dramatic to say that lives are being lost because of that delay and this unnecessary process.