The speed of change in our lives is absolutely incredible now! What is known one day, is no longer true the next. Very difficult conditions for a one man business to adapt. Let alone national and global organisations. So most of us are innovating as if our lives depend on it. In many cases they do! We are seeing frightening price rises to unavoidable bills, like fuel and energy.
Will we ever see life the same as it was pre-pandemic, again? Personally I don’t think so. despite so many problems common to all of us, I can only see a world more divided than ever. Every country impacted by global warming. But struggling to agree on even the smallest things. We all know we cannot continue this way, but nobody seems prepared to take any meaningful steps to ensure change. Only looking inwards and not at the full picture.
This situation is very similar with cancer care. In my lifetime we have treated the disease with three major weapons. Chemotherapy, (poison) radiotherapy, (burning) and surgery, (cutting.) Have we been successful? I guess it depends where in the cancer chain you sit? More people survive for at least 10 years after diagnosis now. A good thing I guess, if like me, you are one of those. However, many are living with very debilitating side effects during that time. Caused by the treatment to help us! Resulting in continued hospital visits, treatment, and a poor quality of life for many. This is the case wherever you live in the world now. Importantly, even if you are either paying directly for your care, or indirectly through an organisation like the NHS.
Despite throwing literally billions at it, we are not making a dent in the numbers dying. We have gone from 30% of us directly affected, to 50% in a very fast time! If this cannot prompt a re-think about how we are working I don’t know what will? I am yet to see one business, large or small that hasn’t changed the way it now operates. Learning to adapt is one thing we have all got used to. However, healthcare is still TALKING about change. Cheap talk from NHS and almost none from Government leadership. Suspicion of outsiders with specialist business knowledge having a say. Continuing to promote from a very limited pool of expertise. Mostly internal candidates, or from allied organisations. Truthfully a real fear of actual change.
Big pharma is driving the entire sector. Dictating clinical trials and treatment options. One of the most powerful and wealthy sectors on the planet. Large charities all doing their own thing. Just attempting to keep their brands alive. Government getting involved rarely. How will all these different agendas help people affected by cancer? Can we really agree that patients are at the centre of all this? Not at all!! Somebody once said that the definition of madness was doing the same thing over again and expecting different results. I suggest that this is where we are now.
Of course there are some successes, but nothing really relative to the time and effort spent. We just cannot sustain this way of working. Cancer is not just one disease, it is hundreds. Every case affects us differently. Well and truly gone now should be the ‘one size fits all approach.’ Probably doing many of us more harm than good. Sure, chemotherapy and radiotherapy are relatively cheap to give. But a lot of us will be returning to hospital for years with different, life changing, side-effects. What is the long term cost to the economy and quality of life?
For some cancers, the standard harsh treatment may not be suitable for every patient. It may also do more harm than good in the long term. But our health service is programmed to diagnose and treat. As humans, most of us once hearing the word cancer, will want it removed as soon as possible without necessarily considering what the long term impact might be. Interestingly it has been said that “the more you search for cancer, the more you will find.” So where will this take us? Currently, without particularly effective screening, 50% of us will be affected by cancer in our lifetime. Imagine if we really were looking for all cancers? Very possibly we may all have cancer cells at some stage. Many will live quite happily without any clinical intervention.
What if you take a test that predicted you would have a particular cancer within five years? What psychological impact would that have? How would the NHS react? I know so many people that owe their lives to screening and early intervention. But I’m not entirely convinced that it is the way to go. The economic and social impact are yet to be proven. Many find themselves being over treated, particularly in breast cancer. These test are already available privately, watch the adverts on your tv.
Currently we are on a rapidly downward spiral regarding cancer, despite the amount of money spent on it. Sure we are now living longer with it, basically because we have learned so much and technology has improved dramatically. Having said that, it would be no shock to see deaths increasing steadily, due to covid and NHS staff shortages. This pattern is now global too. The world has changed so much, and I ask can we afford to continue in this way? Every little success feeling like a big one, and making very little difference to the general public. Whilst the massive industry that is cancer continues to gobble up cash like a black hole.
I can’t pretend I know the answer. But the way we are working cannot continue. The results and processes no longer justify the investment in time, money and human suffering. As always these are my opinions based on experience. Please feel free to share your own below.
I think there IS something positive happening – The NHS is losing its arrogance, and we are finally admitting the rest of the world might be better at treating cancer.
Did you see a LOT of UK media attention at ASCO this year?
It’s so lovely to hear from you. That’s a great point you made. I was also thinking the same about the news coming out from ASCO. Maybe that was because we didn’t have much of our own?
I am not sure that anyone is listening Chris. How on earth do we get change??! I am very confused as to why places such as The Rutherford Centres as now in liquidation as not enough patients (customers)???!!! and no alliance with NHS.
I’m not convinced either Gill. The large organisations are just pushing on with their ways and seemingly we must be grateful. Big politics was the problem with Rutherford and #NHS. Too many agendas, none really including #Cancer patients.
Spot on. As always, Chris.
Thanks so much Elizabeth. What is happening in the sector is not really reflected by demand. That tells me that nobody is really listening. Sadly just continuing with their own agendas.
Chris, I have a clinical oncology study carried out by oncologists in Australia that shows chemotherapy kills nearly 98% of people who take it. The oncologists who carried out the clinical study drew the following conclusion.
“In an environment of scarce resources and cost-containment, there is a need for evidence-based assessment before any new or previously accepted treatment is accepted as standard practice. To justify the continued funding and availability of drugs used in cytotoxic chemotherapy, a rigorous evaluation of the cost-effectiveness and impact on quality of life is urgently required.”
This study was subsequently buried. I would be happy to share the study with you if it is of interest to you.
Thanks so much for sharing this Danny, it is exactly the point I’m talking about. So much has changed in the world but nobody see that revisiting how we deal with cancer is so important. No other ‘business’ does this. Especially in these times.
I would be grateful if you could share the report you mention. Very best, Chris
The clinical oncology study is in your inbox, Chris. I sent it through a senior diplomat to 10 Downing Street. All I heard were crickets. We are on our own on this one.
Thanks so much Danny. That attitude hasn’t changed at all since I started my own cancer crusade 15 years ago. Quite used to it by now.
I’m refusing 3rd line chemo, drugs usually used for widespread mets when I’ve only at this point got a local recurrence. I had to play willing and do the 2 lines, to show that physically I can’t do it as my platelets which are low to start with, just plummet everytime. So I’ve finally had radiotherapy which is what I asked for 12 months ago.
The blinkered view on the shop floor is chemo chemo chemo, regardless that it’ll make my quality of life plummet for little gain it seems. Do they feel they have to be ‘doing something’ rather than go gently?
Would be interested in the report Danny refers to if possible?
Hi Denise, very many thanks for getting in touch! Your story is just so common these days, which is why I wrote this piece. It feels like there is a standard menu of treatment, which is offered to most, despite their individual circumstances and quality of life. There are now many different ways of dealing with cancer including not having some of the barbaric options on the NHS. But why are they rarely mentioned.
Happy to share the report you refer to, Danny is a very interesting guy. I’d be happy to continue this conversation in a more private setting.
Very best to you, Chris
Please send report to my email Chris,.would be an interesting share.
I am frustrated that my current nhs Consultant seems so incredibly downtrodden and hand tied. He freely admits he’s nothing else to offer and no trials in the near future.
I’ve been treated for HCC at leading Clatterbridge hospital via an Immunotherapy trial. I will reach my five years since end of treatment this July. That was supposed to finish me back in 2015. I also have a breast cancer recurrence in neck lymph. The contrast in options is so frustrating. How can I survive one of the top 5 killers and yet be under threat of chemo taking me out for a small met? All cancer centres are sadly not equal, in resources or innovation.
Hi Denise, I will send that report of course. Very interesting reading!
Certainly no equality in the cancer sector, still very much a lottery, which is quite shocking in the UK in 2023. All the resources that have gone into it for so long. Very little progress in relative terms. A true disgrace from everyone at the top of that tree.
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