It’s been a few weeks since I have written a new post, so this one will be packed with plenty of goodies for you to enjoy! Writing is probably the favourite part of my work, but I am being pulled more away from that, to do more practical tasks. There is only so much you can put out through your website and social-media until people want to meet you in ‘real life!’ My personal work has reached a crescendo, and I have just returned from speaking in Kuala Lumpur at the World Cancer Congress. Now I am back into face to face meetings for the next couple of weeks.
But I am not complaining! Yes, it takes a massive effort to do all these things, especially the travelling and presentations. But to be talking to people in influence throughout the sector has been my goal since I was just another person with cancer, eleven years ago. Then, cancer support was mostly books and very little practical help. Things have certainly improved, thanks mainly to the Internet, but we still have a long way to go.
As most of you know, I have never been a lover of corporate charities or the NHS, because I believe they have become too big to be run well, and expensive chaos reigns within. All paid for by public money or donations. Nobody is accountable, and if they are not successful they get moved around until their pension. Most of these are now brands and look to protect themselves rather than try new and innovative ideas, frightened of failure. I have always believed that this is not what is required today and have kept away from that area to try new things that don’t rely on anything from those guys!
Yes there is only me and my wonderful team at simPal, and we don’t hear no! I have held my ground against a majority of organisations and will fight for what I believe is right. Patients must come first and be listened to. Despite all the waffle and expensive advertisements this is still not happening. Of course I realise that these corporates have all the money but everything is temporary. There is a huge groundswell happening, and people are moving towards smaller more impactful organisations, where they can relate to the cause and see transparently where their cash is being used.
Change is happening so quickly now and these charities are just not agile enough to cope. Even getting an email answered can take at least a couple of weeks. Whilst I was away I attended a session that included Macmillan and Cancer Research talking collaboration!! I have to hear this I thought. So CRUK told us their latest collaboration is with the giant Tesco brand, telling us that they were looking to change our diets, of course they are! Not because of the global fundraising opportunity, I’m sure?
The mighty Macmillan told us how they were collaborating with banks to ensure people with cancer got help. Mmmm, not the multi-million advertising campaign that went with it then? This told us to contact your bank and they will have a Macmillan trained person there to answer your query. To say what? Freeze your mortgage or overdraft? Repay your loan? Lend you some money? Of course not, what a load of hogwash. Anyone knows that when you talk to your bank about cancer they want to withdraw your facilities and check on your employment situation!
This from an organisation that has told me face to face they will not share my personal work or anything from my charity simPal, despite more people attending their centres asking for it! These people stand up and say they talk on our behalf. They do not represent people affected by cancer, but their own organisations and interests.
So the two largest cancer brands in this country are trying to out do each other in the hubris stakes, getting further and further into the corporate world in the ever increasing battle for income. They are large charities for sure, but a mere blot on the landscape when it comes to Tesco and international banks. Let’s not be kidded that this is for our interest, these are very cold business deals. It seems that they are more than happy to become vehicles to engage with the business sector rather than help people affected by cancer.
Ironically these two brands are the two that listen least to people affected by cancer, and are so prescriptive with everything they do. A never ending string of meaningless campaigns and media pieces, with absolutely no humility given. Plenty of smoke being blown and very little patient engagement. Quite honestly I am concerned that these guys were held up as shining stars at the world congress!!!
Keeping my faith and focus for so long, has got me to a position where I can offer a credible argument on the same stage that they are on. I can’t influence Tesco or banks, but neither do I want to! We have some incredible partners who are with us because they love what we do, certainly not for any commercial gain. Of course we want to help more people and will need more cash for that, but not at the risk of sacrificing our ethos.
I have certainly been lucky with my health, but all the rest is due to hard work. I have always believed that anything is possible if you want it enough. I am eternally grateful, but now I will be pushing even harder! As always these are my own views and experiences and 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.