New Cancer Strategy — House of Commons, 2015-11-19
Topic: Health
Mark Richard Tami (Labour, Centre-left): I should start by saying that I am, with the hon. Member for Enfield, Southgate (Mr Burrowes), the joint-chair of the all-party group on stem cell transplantation I want to raise a few brief points in respect of the care of blood cancer patients who have had transplants and the ongoing care they receive. It is fair to say that at present the level of support can be described as patchy at best. There is a considerable lack of understanding of some of the issues that transplant patients face Anthony Nolan estimates that, by 2020, there will be 16,000 people in the UK living with the long-term effects of a stem cell transplant, and they will have a higher risk of secondary cancers, infections, particularly in the early stages, infertility and problems with muscles and joints. Then there is an area not touched on much: the psychological effects of both the diagnosis of blood cancer and a transplant. Graft-versus-host disease will affect the majority of patients in the early post-transplant period, but it can persist for many years. Some element of the disease is not necessarily a bad thing, because it shows the transplant is working, but if it gets out of hand, it can cause organ failure and a host of other problems that can, and do, kill patients. In the longer term, the effects can be as minor as skin irritation, but, if in the gut, they can lead to more complicated problems, resulting in the patient having to go back into hospital. As I said, the flare-ups can occur not only in the first few years, but many years down the line, yet a survey of 27 transplant centres in the UK found that while they all provided support for a year post-transplant, only half followed up after five years. Importantly, only 28% offered mental health support. This problem affects not only cancer patients, but a whole host of healthcare issues: we address the physical side of an illness, but then the patient walks out the door without our addressing their mental health needs or asking how they are coping with the diagnosis and other ongoing problems Some years ago, I spoke in the Chamber about my son’s experience of having a stem cell transplant. We had to look for support and counselling. Children, particularly younger children, will have questions such as, "Why has this happened to me?" and "Why can’t I run like I used to?", but we had to ask for that support. It was not necessarily there in the first place or as part of an overall package, as one might have expected I said in the Chamber that I was particularly concerned about the lack of support for children going back to school. I believe there are still no national guidelines for how schools should deal not only with returning pupils, but with other, particularly younger, children. How might they feel about seeing a child they have not seen for a while? The last time they saw them they looked like them, but now they might be on steroids or have no hair—a particular issue for girls, although it is not great for anybody. I was concerned about the poor provision and the lack of guidelines. Some schools do it very well, but some show very little understanding. CLIC Sargent has done a lot of work in this area, but we need to do more. We have to look beyond cancer. Cancer is what people are treated for, but there is a host of other issues around it. We need to look at the whole, rather than just the illness itself, and at how we support people after that illness We define the transplant period as 30 days prior to and 100 days after the transplant, but this assumes that all patients need the same support and have the same outcomes. It takes very little account of some of the late effects that patients will experience. No patient is the same or will have exactly the same demands, yet there is this idea that we can set an arbitrary period of 100 days, as though at the end of it we can say, "Well, everyone’s fine. We don’t need to give them the same level of support." However, patients go to their local area and then we are back with this postcode lottery, where some get very good support but some get very little, particularly if people are not exactly sure where they should go to receive support I do not think that is particularly fair, so I would like—and I know Anthony Nolan would like—a system that looks a lot further than 100 days and instead looks for support for a five-year period at least. Clearly there will be different requirements within that. Hopefully, some patients will not need a great deal of support, whereas others may need a lot of ongoing support. We need the flexibility to respond to that, rather than taking a one-size-fits-all approach We need to do more on ongoing support, and we should not forget either that stem cell transplants are now evolving—they are a lot more common than they were—and it is not just blood cancers we are looking at. Through the work of the all-party group on stem cell transplantation, I know that this is an area that offers us a great opportunity. Equally, we cannot ignore the fact that 50% of transplant patients die within the first two years, so there is a lot of work we need to do—generally, it is not the transplant that kills them, but some of the associated problems and immunity issues Finally, let me say to the Minister that we need to look more broadly at how we support transplant patients, get beyond this arbitrary figure of 100 days, and support people with the physical illness but also, very importantly, with adjusting to some of the psychological issues that can arise.