My last few weeks have been spent speaking at numerous events and also dealing with the long list of people who are contacting me with their frustrations of the current cancer system in the country! Personally I have become bored with the lack of interest from the three biggest organisations in this country, who are the ones that people naturally contact when talking about cancer care. It is no surprise to my regular readers that the NHS, Cancer Research and Macmillan Cancer Support are the ‘cartel ‘ that I refer to. Through the frequent conversations I am having about the lack of progress within cancer support in this country, these organisations are at the heart of it. The theme is common, the organisations rarely respond, and if they do, they are not interested in ideas that come from outside of their companies.
This closed way of working is now starting to cost lives in my opinion! The three organisations I mention, have become intertwined, with many of the top players moving from charity to #NHS or back again. This applies strongly to Macmillan, where a lot of their ex staff now have senior rolls in the NHS. If you add politics to the mix you can see that we will be pushing the same old ideas round the plate, while all involved in this process are handsomely paid for failure as our results in cancer continue to get worse. The system we have, allows no individual to be responsible as they all move round on the staff roundabout to a new role, and so it continues.
I am involved daily in innovation, either in my personal capacity or through our simPal charity, using technology to connect people across the world. All three organisation refuse to even listen or share. This is happening not just to me but almost everyone I speak too. They are working harder to protect their own brands than they are to seek new ways of solving old problems, which is dreadful use of public money, given with trust that it will be used for the right reasons. As the cancer numbers rapidly increase, and with limited resources you would think that they would be delighted to have the offer of help, but unfortunately we are classed as competition for funds, and the door is shut in our face.
In recent years Proton Beam Therapy treatment has come to my attention. I am now involved with several organisations that offer this therapy, which unfortunately is mostly private due to lack of machines. I am speaking daily to people who have had this treatment, yet I know that the NHS is doing all they can to avoid even talking about it’s existence. Yes there will be two sites offering it in the UK, but it will be many years before it can be used for the general public. This is a treatment being offered around the world for many years and we talk about not having reliable evidence? I have no doubt that like most things there is a problem around funding such an expensive treatment, which I totally understand, but let’s have more clarity and transparency.
Increasingly I am seeing incredible innovation, from giant machines to small retail products that can improve the way we deal with cancer. Yet very few of these are signposted to by the ‘cartel.’ So what if your organisation doesn’t market them, at least tell people they exist! Surely we are all in the same business which is helping people affected by cancer? It seems not, as money speaks, just like in every industry across the world. These guys are becoming more and more detached from what is actually required. The world is changing rapidly now and I believe that these behemoth organisations are stuck in the past. Their massive management and departmental structures, not allowing them to be ‘agile,’ ensuring most of their key decisions are out of date by the time they are ready to initiate them.
I was recently speaking at #HNCCONF2018 in Nottingham and talked to many private companies offering incredible things for patients. But the patients weren’t aware of them because of the current structure. What a crazy system! In my early days, I was told by my hospital, not to look on the Internet, but if I’m honest, it is the only way of finding what advances there are for cancer patients. Even my great friend Brenden who runs the wonderful Grove Hotel, the only hotel of it’s kind in the country for people affected by cancer, is not signposted by any of these guys either. Yet another disgrace! Politics, brand and money are at the route of these issues, with total lack of clarity, particularly by the charities on how your donated money is spent. Who do you think pays for these massive TV campaigns telling YOU how good THEY are! If they were that good, they wouldn’t need to keep telling you!!
Now they are pushing things further, with FREE will writing services. I believe this is a massive conflict of interest, by persuading people who are vulnerable to leave money to them. But legacy is the biggest income for both of those charities. Ultimately it is only us, and the donors that can change things, and look harder before we spend our charity pound. As always these are my views and experiences, please feel free to share yours be
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.