It is still very early into 2019, yet my work is already moving much quicker than last year. Our brief but impactful appearance on the BBC News has accelerated interest in SimPal. Not only by more people who want to use the service but organisations who would like to help us expand. This is involving more meetings and presentations across the country, hopefully increasing our donations and allowing us to support more families. Also my personal work is more in demand as social media spreads news quickly of the impact we are having.
This is the year that I stand up taller and challenge the organisations that are there to supposedly help us in our time of need. We are making great progress in that quest, as more and more people come forward to share their negative cancer experiences too. By personally speaking up against the Government, Cancer Research, and Macmillan Cancer Support amongst others, more people are finding their own voice.
Given the fact that the Government is only working in name only, it is blatantly obvious that they are not running any sector effectively, including cancer. Those people are paid handsomely for kicking work into the long grass and have been arguing for two and half years on one subject! I have no faith that any effective change will be driven by them in the near future. As we are all aware, the instances of cancer are increasing rapidly to 50% of the nation! But where is the action? Cancer is not like a document that we can sit and argue about for years. It is impacting all of us now! It does not discriminate by gender or race, it really is all of us.
So who do we go to if the Government is not doing what it should? Where is the pressure from the giant charities who spend so much on lobbying? These guys are practically working with the Government, so are not as independent as they might want us to believe. The media seem to be driven to these people to give credence to their pieces, but I don’t feel that they represent the average person affected by cancer. They have entirely their own agendas, with fundraising at the core. All they ever seem to do is quote what we already know, but do very little to change things! Worse than that they refuse point blank to collaborate with patients who are experts in their own field. They seek to be prescriptive and dictatorial, with very little humility in their approach unless it suits them.
There are so many smaller charities out there, who really have their finger on the pulse, working at ‘grass roots.’ But the big boys are not interested in listening. The situation at Macmillan Cancer Support is a real interesting one. The nurses working in the Trusts are wonderful, fully understanding the varied needs of people affected by cancer. Many not actually employed by Macmillan, but the NHS interestingly. However the voice coming from the charity is entirely different, and non collaborative, it’s all about the brand of course!
This situation has been getting worse for the last few years, but I am now seeing positive signs of change. That people affected by cancer are beginning to take control of their own lives. Social media is playing a massive part in that. Allowing like minds to share experiences and information of how people treat us and spend our money. Can you believe many are still frightened of talking out, thinking that they will somehow be penalised by the NHS or charity giants? Of course there is plenty of good stuff being done, but it is not keeping pace with demand. Technology has meant that we are able to improve so many aspects of our life, but the powers that be seem frightened to grasp the nettle in healthcare.
Unfortunately, positive change will only be brought about by the likes of us. It will not be top down but only bottom up that will make the difference. Not one individual will be able to make that change but all of us working together. Of course people affected should not have to struggle to get the help they need, but unfortunately that seems to be the reality of today. They are all relying on the fact that we stay grateful for what we’re given. That may have been the way in the past, but if we don’t demand better we will never get it.
None of these organisations are paid by impact, and there is a distinct lack of responsibility in the sector. So the same faces continue going from job to job, having no impact and waiting for their pension. We are the people who can change this. Think harder about how you choose to donate your money. If things are not happening, don’t be afraid to speak out, they are not doing us a favour, but spending our money. All of them take advantage of the monopoly situation in the sector. They all protect themselves not look to improve our lives.
As always these are my views and experiences, and please feel free to share your own below. If you would like to join me in pushing for positive change in the cancer sector, please feel free to follow me on Twitter.
So many patient organizations now join the government while that makes finding cures and treatments so mhch harder. Imagine, they use that way our funding against us. Many clinical trials have become employment projects for unemployable scientists instead of real focused and daring medical research targeting better outcomes,
Unfortunately Peter, you are right on so many counts! I have seen so many years of same old same old, by the same organisations that I attempt to disrupt this current structure to the best of my ability. It is totally self-serving and doesn’t have that patient at it’s heart! Appreciate your comments Peter.
Good on you Chris. I also work with my own support groups on the same. Mavericks will get change not compliant organizations that cave to cushy free patient conferences with free registration, free accommodation, free excursions and even free flights often directly or indirectly funded by government (EU, FDA, EMA etc) where we only get dated information and the fake impression we have any say in our care.
Imagine, there even exists a Alliance for a Stronger FDA that is supported by the memberships of many major cancer patient organizations, which means they actually support and organization that delays and kills our direly needed meds and is guilty of tens of thousands if not hundreds of thousands of patients being harmed and killed unnecessarily. The FDA also causes serious meds shortages nowadays. What are these patient organizations thinking?? That appeasement helps us?.
You have obviously spent a long time looking into these issues, and you are absolutely right on all counts. Patients are only involved where it suits and have little meaningful input, despite what it might look like from the outside. I continue with my thoughts that there is a cancer cartel, involving big pharma, Government and charity giants. The way things run in this country suits all of them, which is why you will see little change over time. Maybe you would like to write a piece about your experiences? Thanks, Chris