We are very much a global community now, and the Internet has made the world a much smaller place. There are very few secrets these days, and if you really want some information, the chances are that you will be able to find it. Most advice from medical professionals is still “don’t look on the Internet.” I understand of course why that is said, as you can soon be part of ‘the worried well’ if you took to your computer every time you felt under the weather. But I am concerned what is happening now, regarding cancer treatment for complex cases in the UK.
Of course, you can only offer treatment that is at your disposal, and this is where I believe we need to change drastically, for many cancer patients. The NHS is not the only provider of cancer treatment in the world. Of course, to those of us that are entitled to it at no cost, we are very grateful for the incredible treatment we receive. But in fairness because of this situation we are not always aware of treatments that may benefit us, outside this system. “But we will have to pay for that” I hear you say. Of course, and that would be a matter of individual circumstance.
Many of these treatments, may be unproven to our current standards, but many are! They are not recommended because we don’t have them, not because they don’t exist. My point is that people with a very complex cancer should know that there may be better options for them outside what is currently offered through the NHS. It would then be for them to choose if they want to try and fund it or not.
I have just returned from a visit to the Prague Proton Therapy Centre. This involved speaking to doctors plus patients past and present. Also two new patients from UK having prostate cancer treatment. Yes, we are having proton therapy in the UK but the hospitals are in their really early days. This has been a treatment of choice across the world for many years. Even the health insurance companies in these countries understand that it is cheaper to give the better treatment first, and reduce the late effects visits. For the patient no more endless visits with problems from surgery or basic radiotherapy. Importantly giving a better quality of life to them.
The new patients from the UK found the centre by searching the Internet. They were not told about this treatment at all. What was offered was standard treatment, surgery to remove the prostate, and all the issues associated with that, plus radiotherapy. Neither wanted that and decided to fund their treatment privately in Prague. My point is that they should have been told about this treatment, even though we don’t provide it as standard.
Strangely we are sending rare cases to the US, where it seems we have long term relationships, but not to Europe? You may remember the case of young Ashya King whose parents took their child from the UK for proton therapy in Prague. Incredibly he is cancer free after four years! Of course this won’t be the result for everyone, but after yet another four years why are we refusing to use these European centres regularly?
Should we not be telling patients that these services exist? Why do we have working relationships in America and not in Europe? Please draw your own conclusions from that. I recently watched the very sad programme about Dame Tessa Jowell, who managed to obtain the best possible treatment for her brain cancer, from outside the NHS. She was very upset that the system was so unfair and that regular people could not access those treatments. It was estimated that her life was extended by nine months.
Of course I am aware of all the people out there offering treatment that is unproven and risky. I also understand that doing nothing is not an option, when you are going to die taking that route. I believe that people in this position should be given all the information at the clinicians disposal, even if this means treatment that is outside their normal jurisdiction. Many of us can’t deal with too much complex information, but personally I feel I need it to help me make an informed choice.
My years of personal experience in the cancer sector have made me question everything, and I am probably one of the most educated patients around, having experts across the world available to me. But I see constantly strange decisions being made under the pretence of ‘saving money.’ Mostly in the longer term they do not, and means that the patients get a much poorer quality of life. Surely they deserve to know all the facts?
The one size fits all approach is no longer the way forward as we can see. Much more targeted therapies are becoming available, But cancer ‘will wait for no man,’ and we need to quickly rethink our treatment strategy. The current system is far from transparent and I believe a lot is hidden from the patient for political reasons. If there is a better treatment outside our system they should be told about it. The choice is then for them to make.
As always, please feel free to share your own experiences and views below.