2017 has been my busiest year yet. Thankfully my health has remained consistent, and I have been able to push forward our work with simPal, and develop my own speaking and writing work. During the last couple of months of the year I have seen big signs to show me that the world of cancer support is finally beginning to understand what must happen if we are going to be able to provide the correct resources going forward, to help the increasing numbers of people affected by cancer. We have been aware for many years that there are far too many cancer charities to be sustainable and that politicians are slowing the progress of healthcare support. But most importantly I have seen a massive ‘ground swell’ by people affected by cancer. Social media has given them a voice, and they are now connecting across the world as one. No longer prepared to sit back and be told what is good for them, but now driving the change that is long overdue.
One of the most important collaborations that happened just before Christmas is the merging of Bowel Cancer UK and Beating Bowel Cancer. Meaning that they can now work together sharing expertise for the benefit of the patients. Common sense finally prevailing! In Breast Cancer particularly, we have many large charities all doing similar work, why? Is this just brand ego now? I also have to ask if anyone really knows what Macmillan Cancer Support and Cancer Research actually specifically do? Many even get confused between the two. It really isn’t as simple as looking at their titles.
What we are also seeing is the speed of change too. The way we work, and what is required is not even what it was last year. Our last five years will be no guide at all to what will happen in the next five. This is such an exciting time for us all. I see opportunities wherever I turn, but many in the health sector can only see obstacles. Large organisations are created by people who get paid well to talk. Politicians for example will argue and argue, as they get closer to their pension. Large healthcare runs in the same way. Charity giants run by large boards well rewarded but pay not really commensurate with impact. Quite simply there is little incentive to do things in a much more timely way.
My personal, experiences started ten years ago, yet despite all the exciting innovations regarding the Internet and technology, decision making is still going at the same pace, slowly! The people making real progress in this time are people affected by cancer. We are now using new technology to communicate with each other and produce the support that we know is required. In most cases we work with very little money, but have an incredible impact in the community. A fantastic number of current patients, not only dealing with their own issues are taking time to help others. Filling the many gaps that we see in the cancer support sector. After years of asking the NHS and charity giants, the action is coming from the bottom up. The smaller charities who are in touch with their patients, really ‘get it’ and are also starting to change the way they work, ensuring they stay relevant and forming strong patient connections.
However it seems very strange to me, that the bigger the organisation is, the less they are doing this? The NHS being supported by flaky politicians and intransigent charities, seems to be stuck. All using past ways to solve todays problems. This is the time for innovation as we face problems we have not seen before. Survivorship being the main one! Who really expected so many of us to be surviving cancer, but living with the after affects of treatment? Now is the time for brave and innovative leadership to take us into new territory. But I cannot see that. Few young people at the top, and still the same names who have yet to find the answers after many years of trying. Of course you need experience in organisations of this complexity, but you also need fresh ideas and energy, and most of all a ‘can do attitude.’
The biggest obstacle I ever hear is money, which is easy to put up if you really don’t want to look at the idea. These health giants have got used to using that classic response. It saves them listening. All of what me and most of us out there do, takes very little money, which forces us to think ‘outside the box.’ There is always a way to do something if you really want to. That is why I believe that the cosy cartel of politicians, NHS, cancer charity giants, are happy with the current system. Otherwise, why would they not engage with the people that have the real expertise and answers, people affected by cancer? I truly believe that this is a scandal!
What we must remember is that all of these people earn very large salaries for talking! But all that self importance thing is changing. What we need to see is action. Smaller charities are now working on the front line with their patients and making a real impact. They are also collaborating more effectively to make better use of limited resources. 2018 is the year that many patients will be working together to oppose this current lazy system and ensure the charity giants listen more and waste less. Cancer teaches us about the value of time. We have already wasted a lot, let’s not lose any more!!
As always, these are my views and opinions, based on my experiences. Please feel free to share yours below.
I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions.