This week has been one of my busiest in recent times, with a variety of engagements fulfilled, meeting many different people, from patients to Chief Executives. I have also done several presentations to different audiences. Firstly I’m grateful that currently my health is holding, enabling me to do these, but secondly it is a great opportunity to continue to find out personally what is going on in the world of cancer support. Reading and talking is one thing, but there is nothing like first hand experience. I would like to think that my previous business life, and my current patient experience gives me a unique perspective on things.
But I have to admit to writing this piece with a dark cloud of frustration hanging over me. There was a constant theme during this week, and that came every day from very contrasting people, and something I experience more and more personally! A distinct lack of engagement from many health organisations, to people offering new innovative ways of helping in the cancer sector. I have listened to many presentations in recent years about how the ‘patient voice’ is so important, and of course it is! But I know from my own experience how this is just not happening.
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 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 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, don’t even ask about the N.H.S! 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. This will only change if you want it to. 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.
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.
Above I have posted my experiences, and those of others who have contacted me recently, my opinions are based on facts, but are only my opinions. I would welcome your comments on your experiences of sharing ideas with support organisations, to enable me to expand this discussion.