I think it's not unkind to say that healthcare is a bit of a lottery in the UK. It's particularly the case with ovarian cancer which is a rare cancer that is frequently diagnosed too late to hope for a cure. We find ourselves outside the body of known science and this makes for an uneven playing field.
Once we're diagnosed with an advanced cancer the standard treatment is a radical hysterectomy taking out as much of the disease as possible. Given the medical profession have no idea which treatment will work on any one of us they opt for the one that's generally been seen to be effective in the majority of patients. The NICE gold standard is Carbo-Platin and Paclitaxol given intravenously every 3 weeks. It seems reasonable to offer this to each one of us so long as our kidney function is robust. In that sense we have parity of treatment and resources.
So far so good, but then you start to notice that the system is a lottery. If you're lucky enough to be near a centre of excellence that actively involves itself in ovarian cancer trials, and you're invited to take part, then you're in the fortunate position to choose whether or not to participate. That's patient choice, but not all of us have that choice.
This is where it all breaks down. Small centres might not attract clinical trials because there would not be a large enough sample group, because they are strapped for cash, or simply because there's no one with capacity to take on additional work at the moment the clinical trial goes online. This is less likely to happen in the major centres and they therefore build up more expertise.
It's a frustrating experience for those of us who are unable to access trials. If you look at hospitals across the UK the average survival rates are significantly better in some centres than others. Making an uninformed guess I'd imagine that's because in any clinical trial, even if it's not significant, there will be some patients whose cancer responds well to the novel treatment or pioneering surgical techniques. It could also be said that the larger centres will attract the best clinicians and surgeons and because they are specialist centres staff gain more experience and expertise in a narrow field. This body of knowledge will hopefully get us closer to a cure for us all. It seems unfair but logical.
I don't think we should just accept we get treated in our nearest centre and what that centre offers is necessarily the best. A clinician isn't going to offer a patient a breakthrough drug or a surgical procedure if it isn't offered in their health board area. Equally they may not be forward in telling us about trials that take place 25 miles away because it makes life difficult for everyone and particularly our overworked oncology staff. They have an obligation to manage their patients' expectations and there may be a tendency to downplay exactly what is on offer 'out there'.
So often I read that women ask for a second opinion at a major cancer centre when all local resources have been exhausted. As our disease progresses and we have more lines of chemotherapy we're less likely to be eligible for trials and radical treatments. To my mind it's better to ask for a second opinion early on in the disease. Once the disease progresses it seems to me the best centres such as the RM or the Christie offer no more options than the most remote and modest cancer units. You could say we all start and end our cancer journey equitably.
I rather feel that if a patient is interested in taking part in trials they need to play their part in finding out where the centres of excellence are, where the trials are, and what procedures are available. If a patient feels they would be better served elsewhere then it needs to be discussed. Of course there are many things to consider. Not everyone has the ability or the volition to relocate in order to increase their exposure to a range of procedures. I'm not so sure it's impossible but there are certainly challenges. What happens, for instance, if you're on a trial and have side-effects or get an infection? Where do you go for help if you're 2 or 3 hours' journey from the prescribing hospital? Where do you live if you want treatment hundreds of miles from home? Who takes on your family responsibilities? What costs would be involved in relocating?
It does indeed seem a bit of a lottery. I spent a half hour with the Minister of Health for Wales and I think he would agree that there are huge flaws in the system. A cancer centre may be a centre of excellence but not your type of cancer. I begin to understand the logic of having centres of excellence but recognising that in the smaller centres there will be fewer trials so that many patients will be offered only the standard 'known' routes. I don't think we're going to resolve the political dilema in the short-term. All we can do, if we object to what we have now, is to do what is necessary to change our own personal cancer experience.
These private thoughts result from a number of discussions with ovarian cancer charities, politicians, oncologists and other women with ovarian cancer. I share them with you as it might help explain in some ways some aspects of why we have a postcode lottery in the UK in the treatment of ovarian cancer and why it is likely to stay that way.