How Much Should A Patient Be Told?

How Much Should A Patient Be Told?

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. 

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8 Comments
  1. This is a really tough one. Do you tell the patient who you know has no way of paying for it? Very tricky.

    • Yes I get that totally Julia. It is surprising how resourceful people can be these days. Crowdfunding etc? But if they don’t know treatment possibilities exist? It is tricky, but I would really like to know the possibilities. Like all things involved with cancer, very individual.

  2. Chris, you raise an interesting point in this discussion-How do patients find out about what therapies are available where? There is no central clearing house for information. Here in the states, it’s pretty much up to the patient to figure it all out. If there is something in say Germany that might be beneficial, finding it may be tough.

    Just an observation…

    • Hi Pat, it’s lovely to hear from you and hope all good in your world.

      We both have very different health systems but the problem is common. Patients left trying to work out what is best for them and where to find it. Money seems to be the driver in most cases. It certainly is not like trying to buy something on Amazon!

      It seems there are always agendas somewhere, possibly generated by pharma?

      The cancer world is certainly a tricky one. Best as always, Chris

  3. Chris

    You are so right – but I wonder if non-referral is a symptom of ‘dog in the manger’ attitude from so many in NHS? I went to France to get treatment because my ‘world famous cancer hospital’ told me skin lesions were due to age. French cured problem, but when I returned to UK I was treated as a whistleblower and told I wasn’t being supportive. Found all the clinical trial notes (translated in English) were dumped in w.p.b. Sad/

    • Hi Verite,

      That is a shocking story to hear! You are a worldly wise lady and your determination/money got the issue dealt with, which is great. But for most that would be impossible. I have found that there is naturally an air of suspicion for anything that is outside of our service. For many, that might be their last option and I believe they should be told it exists, but of course subject to finance, which is generally a problem for most. But the decision then lies with the patient.

      So glad you got that situation dealt with X

  4. This is something I also have wondered. I have personally known people who have tried desperately to raise money to fund treatment overseas, but sadly due to the aggressive nature of cancer by the time they have enough money, too much damage had been done, and sadly they have died.
    I can’t decide if it is arrogance on behalf of the oncologist, or ignorance. It is also possible they fear reprisals or hands being by the trusts for recommending a treatment which they have no control over. It’s more than plausible they fear being sued or sacked for advising people?
    Moving forward though there needs to be clear alternatives to the “system”. As great as the NHS is, sometimes in their approach it seems they bring a sword to a shootout!
    Cancer is so complicated and individual, as such possible treatment plans are bespoke, so I understand the reasoning to a point, but I totally agree with the articles reasoning … either the oncologists provide alternatives at the point of diagnosis, or a “professional body” offers they advice they will not give?

  5. Hi Dan,

    Thanks for your incredibly insightful comments. I would like to answer them in chronological order.

    The first point you make is very important, in many cases the patient is too sick to endure even the most modern treatment. I often ask myself if those possible options should have been discussed much earlier? I have met many oncologists in recent years and I could never accuse them of arrogance. I have found them all to be very caring and passionate for the work they do. Many are as frustrated as I am with the current system.

    As you mention, the biggest problem is the unique issues that cancer creates for each of us. As we know it is not one disease and we will all have different outcomes even with the same disease and treatment. Cancer is a massive challenge to mankind, and here in the UK we are finally realising that the one size fits all approach is not working. However we have worked like this for so many years it is proving difficult to change.

    I also believe there is an element of ‘fear’ of going outside the current system. What may the repercussions be? Is the system too inflexible? Within healthcare there are also so many agendas going on, from multi national pharma to local Trust issues. I do believe that in a lot of complex cases there needs to be much more transparency, and earlier!

    Really love the sword and shootout analogy btw 🙂 Thanks again, Chris

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