My inbox is full and our work at Your simPal is getting incredibly busy as word spreads. I often reflect on pieces I have written in the past, and found this one that sums up exactly how I feel today, FRUSTRATED!! Why am I being contacted by so many more people who cannot find what they need with existing organisations? I am wondering what relevance many of our services have today in this fast changing world? I’m shocked that nothing really has improved in this time. Let us remember that cancer is a time limiting disease!
“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 cant 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.
What a wonderful blog again from you Chris. Yes we have to ask ourselves what do big charities actually do for the individuals that are currently coping with cancer for want of finding the right words
We can do our best as individuals but it is shameful that big charities don’t share what you are doing for others Chris.
anytime or anything I can do to help just ask you know I am always here for you. You are always there for others. I muzt say the local charity I support The Beatson where Laura was treated are a wonderful charity who do great work for the individuals who have cancer and their families too. charities have to get back to grass roots and ask their supporters especially the person who has the cancer What do you need? what can we do to help you out here and now? As you say cancer has a time scale for lots of folks. so come on big charities do more to actually help those affected with cancer. hear hear Chris, thanks for another great blog
Firstly I’m pleased to hear that you received a positive response from where Laura was treated, and that you are able to help them support others. That’s what it is all about really, we all do what we can.
Unfortunately, there is a lot of money coming into the cancer sector, and many of the larger organisations focus there instead of what they are really there to do. It seems helping people is not a great money earner!!
Thank you so much for everything you do Lesley, your voice is invaluable and we much appreciate your support. Stay well, Chris xxx
I’ve got to the stage where I feel a bit swamped over social media and rarely venture onto Twitter any more. When I do, I find I’ve missed shares / re-tweets / follows that I really shouldn’t have missed and then have to play catch up. And I always feel bad about it! Thanks for a great blog as always Chris! Deb xx
Hiya Deb, it’s so lovely to hear from you. If I was working in the big wide world you wouldn’t see me on social media either! For me this is my work, and I couldn’t operate without it. But I do understand many who struggle with it. If life is made more complex by it then much better to leave it alone.
You give a fabulous amount of support to many, including me, but we can only give what we can. One day I might feel I have had enough??
Always love your comments Deb, and look after yourself!! Chris xx
Sorry, just seen your reply Chris! You look after yourself too 🙂 Deb xx
Sorry, just seen your reply Chris! You look after yourself too 🙂 Deb xx
Great to read your blog. Generally, grassroots folks do awesome work doing hands on care, etc.which isn’t found elsewhere. So often this is not the case with BIG charities. That being said, ‘the big guys’ often fund research, influence policy and raise awareness that ‘ small guys’ can never hope to do. Yes, it can be frustrating not to see services go where YOU or I feel they are most needed/wanted but we won’t give in. Just try to do our best to!
I agree with the fact that there are two sides to the coin, but the problem is that most of the cash goes to the biggest ones, and us working on the front line do not receive the backing we should.
But as you say, we just have to do our best with what we have!
Looking forward to seeing you in KL.
Hi Chris, loved your post and found myself recognising the patterns of behaviour of some of the cancer establishment.
You may remember I told you about how I approached two major cancer charities for help in launching my doctoral research project and they dismissed my work as “not relevant to their members”. I very soon realized that their own agenda is the only thing that is important to them, not what others are doing to support cancer patients unless of course they want to fundraise for them.
Your work is important Chris and thank goodness you have the motivation to carry on. Good health and may your work continue to inspire others.
Thank you so much Dianne,
Yes I do remember your story, and as you know I hear things like that daily. I have been noisy recently on social-media with our two favourites and I have had face to face meetings with seniors. Not sure If I can make that difference but I will certainly make things very uncomfortable.
Even as I child I worked against adversity, and cancer has shown me what I can really achieve. I have only one agenda, and I’m not influenced by money or position. My situation is very unique, I don’t see problems, only opportunities 🙂
Really lovely to share experiences with you Dianne, Chris