This year I am focusing on collaboration amongst patient supported work, and how we can affect the current poor outcomes for people affected by cancer. Despite the enormous amount of work and money that goes into it, our survival rates are still some of the worst in Europe. I call this a disaster and like most man made problems, this hasn’t just happened. It is the result of lazy healthcare organisations and a constant stream of politicians from all parties spouting no end of jargon, being massaged by millions of pounds and eager charities looking to further their own influence. Nobody within that cycle wanting to step out of line and lose a cosy career. We all know the increasing cancer figures yet still we can’t improve. Of course this won’t happen overnight, but I honestly cannot see any improvement in the immediate future.
This is a scandal in my eyes and I would like to unpick some facts, firstly about some of our charity giants. We all know that there are too many cancer charities, however I believe that this will change naturally as many will struggle to stay relevant. I would also like to say that I am a supporter of charity, and of course have my own, and collaborate with several nationals. But what I see in certain areas shocks me and I believe if people looked at the figures they would also be. I have taken these figures from the latest reports by the following charities, Cancer Research, Breast Cancer Care, Breast Cancer Now and Macmillan. (You can read the full reports if you just click on the links)
- Cancer Research: Total Income £647M. Cost of fundraising £108m (“VOLUNTARY FUNDRAISING (£108 MILLION) We wouldn’t be able to conduct our charitable activities without fundraising. We invest in a number of areas to generate income and think about how we spend and invest money carefully to maximise the returns to the Charity”)
- Breast Cancer Care: Total Income £16.8M. Cost of fundraising £6.7M
- Breast Cancer Now: Total Income £27.6M. Cost of Fundraising £13.1M
- Macmillan Cancer Support: Total Income £247M. Cost Of Fundaising £72M (“We actually awarded £13.5 million in Macmillan grants to 34,700 people.”) (Campaigning £25.1 million.) (“We campaign for changes to improve the lives of people with cancer and raise awareness of issues most important to them.”)
Sure, you can make figures say what you want them to say, and I am not an accountant, but I am a businessman, and I would not consider that the massive amount invested in fundraising is working as well as it should. If you look further into the detail of these public reports you will also see in relative terms how little gets spent on the actual people who need it. For example with Macmillan Cancer Support, twice the amount of money given in grants, is spent on campaigning! All of these organisations spend a lot of money on political lobbying, and they may tell me things would be worse without it, but I am no longer convinced. I see many charities courting politicians, but what is happening because of it? Are they just promoting themselves to increase their exposure and thus income?
What hurts me even more is that the four organisations named above, duplicate a lot of work under their own brand and have very little meaningful engagement with expert patients. Preferring to drive their own branded agenda under the ‘cover of night,’ telling us that this is what we need! They are always first choice with the media, speaking on our behalf. Yes, these are the people who are not even listening to us! Politicians are even worse. In my work, I get to meet many senior politicians who tell me they admire what I do and wish more could be done. Not one has ever asked for my help in improving things. Fancy trips to Parliament and expensive conferences are only impressive if they lead to something positive, other than PR. They do not!
So here’s the big question. Why do the biggest players in cancer care continue to ignore the real experts? The people who have experienced the system and continue to live it day after day. Can you imagine a business not listening to it’s customers? One key difference is that most of the money being spent is public and charity cash. Who is ultimately responsible for results? No one directly of course, and this is where the system fails. Most charity giants judge success by how much money they raise, not the impact they have. Politicians are rarely in the job long enough to care. It will always be someone else’s problem for them.
There are now a rapidly increasing number of people affected by cancer, including myself, who do not see these above organisations as relevant in their current form, and certainly are not required to represent our views to the media etc. Many small organisations across the country are totally fed up watching this farce being played out year after year. This year I intend to get further into this scandal, until patients are invited to contribute to decision making. Also you charity heavyweights, listen to what is being said, and don’t treat us as competitors to your income stream. We are people affected by cancer using our experience to help others, aren’t you there to help us?
I am aware that this is a delicate subject, but it needs to be opened up and people need to understand where their donations are going. That money is given with trust that it will be spent appropriately. I am not convinced that people really understand what that money is used for, and they can see a little clearer here. Of course the donors will decide, and rightly so! As always these are my experiences and opinions, please feel free to share your own below.