As my own cancer journey extends, and my work expands, I am now involved with many different organisations, offering advice and experience, in the hope that support for people affected by cancer will be improved in the longer term. My own work before cancer, was tangible, and I could always see both short and long term results. I always enjoyed seeing the benefits both personally and for my customers. However, having willingly entered the world of healthcare to use my time constructively, I find another completely different way of working, which frustrates me most of the time!
I do understand the reasons why many things are done, but no one seems to realise that people affected by cancer do not have the time to wait, while numerous groups and committees discuss projects and then dispose of them before they even get off the ground. Endless ‘exciting’ new projects, focus groups grants etc, eventually turn to dust as time marches on! Resources constantly wasted on schemes that will never be sustainable, dreamed up by people in ‘marketing.’ Patient opinion sought as a tick box exercise, but no feedback at all after the tea and biscuits meetings. Unfortunately, I am dragged into the politics of cancer.
Politics in my opinion is one of the biggest hindrances to progress, in our society. From the top down, we get caught up in it, and believe it or not, it has even found it’s way into the world of cancer, it even exists in the waiting rooms between patients! Firstly, there are so many different cancers, and there are people lobbying on behalf of them all, so that they gain awareness and then funding. Why is one more important than the other? Is it because more noise is being made about a certain cancer? Has it just become fashionable because someone famous has died of it? How do we decide how our finances are allocated?
What part do drug companies play in the bigger cancer picture? They are so powerful, internationally, I’m sure that they have a very big say in cancer work across the world. With pricing and availability, we are quite literally at their mercy. Whilst on that issue, even in this country, we have the ‘post code lottery’, deciding who can or can’t receive certain drugs. Here you can see a very simple example of how politics is involved with our treatment. Different regimes in Scotland, Wales and Ireland. How can it be right that a successful outcome may depend on where in our country you live!
One of the most surprising areas that I have encountered politics is in the cancer charity sector. Where the person affected by cancer should be the most important thing on the agenda, I am shocked at the competition for brand awareness and ultimately income. Don’t get me wrong, the charity sector do a lot of good, and of course over the years have improved many things for people affected by cancer.But today, it seems to be more about competition than collaboration. My personal view is that all charities do certain things well, but instead of trying to be ‘all things to all men’, for the sake of brand, more signposting between organisations should be done. This will enable resources to be used more effectively, and will prevent duplication.
Do we wear, pink, purple, red, green or yellow? Who do we support when we have to put our hand in our pocket to donate? I am sure that all of us are affected by cancer, either directly or indirectly, and have used the services of one of the charities. Personally I could make a case for giving to all of them. But I need to be more convinced that my money is being used effectively.
Finally I would like to mention, ‘waiting room politics.’ This is something that you may not even have heard off, unless you are a patient and have been sitting in a clinic for some time. Unfortunately, there are some people that feel even as patients, there needs to be some sort of hierarchy. Who has the most problematic disease, harshest treatment, most appointments etc?
Since starting my blog, I am now in contact with people in most major countries in the world, these issues seem to be worse there. Particularly where care is not provided by the state. I communicate with people who can’t even afford to travel to see their relatives who are dying. People who need treatment but cannot afford it. Despite my many criticisms of the system, I do appreciate how lucky we are here, but that will not stop me seeking improvement as we still have a long way to go.
It seems, whether we like it or not, politics is heavily involved in the business of cancer. As a long term patient, I have become frustrated, as cancer care gets embroiled in the ‘blame game.’ Governments spend millions, fighting each other, and constantly changing the N.H.S. It appears that they are using health, as a political football to score points over each other.Surely, whichever party your sympathies are with, we all want/need the same thing. After all, we will all require medical help at some time in our lives. I would say that cancer is a case for working together, politically, nationally, and internationally. It is our common enemy!
Have you encountered any examples of the politics within cancer? Please feel free to share your experiences here.
I think politics is in evidence on certain cancer support pages on social media. I won’t name the organisations here but I’ve seen plenty of threads where arguments, bickering and ‘my cancer’s worse that your cancer’ are the negative themes running through them. Not to mention the trolls who then decide that we should all be left to die because the earth’s already overpopulated and resources are limited. All very unpleasant so I steer well clear of those threads nowadays! Politics definitely exist in the cancer sector and while I believe / agree with you that collaboration would be more beneficial, it seems competition has become so ingrained that all we can do is keep chipping away to try to change things. It’s like taking down a brick wall one brick at a time, chiseling away at the mortar around each one and carefully removing it – in this case what seems like a very large brick wall that’s going to take a lot of time and effort. But it’s one of those jobs that has to be done and the more individuals who join the demolition team, hopefully the easier the job will become over time and lead to a beneficial result for all patients.
I’m in your demolition team Deb! I think you are right that the competition culture is very ingrained, and I am doing my best to improve things there. My worry is that patient focus gets lost amongst the clamour for brand awareness.
With my work, I enter many different areas, of the system, but see very little understanding of ‘mutual collaboration.’ Plenty who want me to help their cause, but only a small minority offering to share mine. They just don’t understand why it is good to share!
I agree also about the disease ‘hierarchy issues,’ and one of the reasons I facilitate this site, to try and do things differently. Thanks so much as always for taking the time to share your own experiences which are truly valued.
An astute analysis of the politics of Healthcare.
Recent events in British politics has of course highlighted the fact that the major parties are so focussed on their own agendas that they appear to have lost touch with a ground swell of public opinion.
One articulate man with strong convictions has echoed the thoughts of many and rocked the establishment boat.
For obvious health reasons I would not advocate promoting your thoughts to the media with a pint in one hand and cigarette in the other, but you may consider a re-branding exercise along the lines of Unscrupulous Cancer Isolates Patients (UCIP).
Keep up the good work !
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As always, you have made me smile, and thanks so much for that. I think your analogy is brilliant, and sums up the situation so well!
There are many times I feel like that articulate gentleman, arriving at the party, but I would like to feel I have more substance!
Thank you as always for your support and encouragement, with my attempt and some culture change. My best to you both, Chris