When I was initially given such a short time to live, my ambition was just to make a noise about how random and disjointed cancer support really is. But now after many years of unexpected life I have a strategy, a plan and an infrastructure to help with that cause. There have been many improvements in that time of course, but this week emphasised how there is still a massive lack of desire to collaborate. I am now working with three organisations who offer life changing opportunities to people affected by cancer. However in all cases the N.H.S has explained how difficult it is for them to promote the services, and charities have shown little appetite to look unless there is a major brand benefit for them. There are so many service providers like me out there, that are finding this situation and I hear the same story constantly. Below is a piece I wrote eighteen months ago so am disappointed but unsurprised to hear that little has changed since.
“More and more people are contacting me with wonderful work which they are doing in their community, yet cannot find a voice. They all tell me the same story, of approaching charities or N.H.S, but being blocked at every turn, by red tape and unhelpful people. These are people who in most cases, have personal experience, and are funding things themselves, in an attempt to get the service going. I have even heard this story from charities trying to work within the N.H.S. In many cases all people are asking is to let them know they are there, which in todays world of social media is not difficult at all!
But I am finding more and more, a sector where the people who control it, are loathe to use their financial muscle and power in the market to think outside the box and help others outside of their network. With my business hat on this reminds me of the competitive world I worked in. The big got bigger, and everyone else got left behind. I have always been successful on my own as I look to do things differently to others, and not to compete. In cancer support I have used the same process. There is very little new around, but my USP is that I want to help people! Not really a science, but you would be surprised how many out there are not doing that.
Social media is now a large tool for most organisations, but is it being used properly, and for the benefit of people affected by cancer? Sure, we have advertising about forums and helplines etc and helpful things, but in most cases all on brand, with little appetite for anything outside of that organisation. Also you really have to look hard and sift your way through the barrage of fundraising opportunities. I spend my day sharing work on Twitter from around the world, so that we can all benefit from innovation.
Of course not all organisations are like this, but my own experience shows me that smaller organisations are much more open to new ideas and collaboration. I work with many different sized organisations, and I struggle to get my own work shared in some of the larger ones, but others around the world share regularly, as they understand the impact that it is having in the community. There was a great irony when I was announced as Health Blogger of the year recently. Many charities contacted me to tell me how good my work is, but still can’t bring themselves to share it! If I am finding it hard going with some organisations I work with, then I know how difficult it must be for most.
I did an experiment on Twitter recently, and tweeted one major charity daily with my blog. I received not even an acknowledgement, but when I re tweeted one of their tweets they did! This very ‘closed’ approach is so obvious on most organisations social media feeds, constantly full of self praise and telling us how good they are, and asking us to raise more funds. This week I was asked what I felt the secret was to effective social media, and I said “engage properly with your audience.” All effective communication must be two way, it is as important listen to what people say, as it is to tell them your message.”
My concern is that where I see the most patient engagement and innovative ideas is the area that is struggling for money and voice, generally those two things are linked! There is a lot of passion coming from people who really care, but are continually frustrated by organisations that should be there to help and encourage. Life is difficult enough dealing with your health of course, I also find the same thing, but I feel strongly about this issue and will do my best to improve things. I am now proactive in a couple of partnerships which will become public soon, to hopefully dramatically change some aspects within the landscape of cancer support. We may well encounter some downsides to the projects, but we will at least try some new ways of working!
For my work, sharing is the thing that is most helpful, and I am always grateful for. By following this blog, and connecting with me on Twitter and Facebook, you are really helping to get our message out there. If enough people connect we can really make a difference.