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.
” …. 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.” Yep, yep, yep, yep, yep … very frustrating, but well done you for highlighting this, Chris! Off to share x
Hi Callie. I am so frustrated hearing from incredible causes offering wonderful support that are being blocked by large health organisations. In many cases their services are free to patients, but lack of vision and effort is halting their progress by the very people who are supposedly working for the best interests of people affected by cancer.
With the support of people like yourself, I am doing my best to help as many as I can to become ‘public knowledge’ and let patients decide if the service is right for them. I still can’t understand the lack of signposting from the large ‘brands.’
I am determined this year to do my best to break some of these old barriers down and make the area of cancer support much more transparent. Thank you for your support which is much appreciated Callie!
As you know, I too am constantly frustrated by the lack of any interaction from some of the larger charities with the work I do with Womb Cancer Support UK. I’m not here to step on any one else’s toes – I’m here to offer help and support to womb cancer patients and, as I well remember what it felt like when I was diagnosed 6 years ago, the more support, advice and information there is out there the better.
I look forward to hearing more about your new collaborations as I know that whatever you do, you will be doing with patients interest at the core of everything.
Regards as always.
Hi Kaz, you know I feel your frustration too! I really didn’t want to set up my own community etc as I wanted to work with people already doing the work, but there didn’t really feel much of the personal touch to what was already there.
Since I have become established I am approached by so many people who are coming up against brick walls trying to develop their support services. This year I have seen some that can make a difference across the world. The ideas are innovative and so simple! I have decided to try and get them into the main stream.
Indeed everything I do is to try and improve the lives of people living with cancer! Thank you and everyone for your support, without which my work would not be possible. xxx
It’s not just the UK. Medicine (and charities) in the US live in their respective boxes. They can be oblivious to the reality of the market. A case in point: Can anyone believe that medicine didn’t even believe chemo brain existed until recently???? Talk about being disconnected from your market! I can site a hundred other disconnects.
Social media is changing things. Patients need to plug in on line for better information and take charge. Because the powers that be have demonstrated their disconnection from their market, it is opening up new ways of addressing old problems that have been ignored by the status quo.
You go, Chris!!!
Hi Pat, yes I’m aware this situation is similar across the world. You are spot on about the disconnect between health organisations and patients. Many are so large and have lost real contact with the people they are there to help.
Social media is vital to our work as we both know. Gone are the days of being fobbed off by people who don’t want to talk about the issues.
2016 is the year I do my best to break through some of this as things don’t look like improving on their own.
Appreciate your support as always Pat x
As patients, survivors, etc, we know what we need and so set about providing it. I think I said once before that trying to remove barriers and encourage collaboration in the cancer sector can be like trying to demolish a wall one brick at a time. Keep chipping away Chris! x
That’s an important point Deb, patients and survivors know what they need. So why when approaching large health organisations do they find a brick wall? Shouldn’t we all be working together?
I have started my JCB ready to do some heavy demolition 🙂 Thx as always Deb x
A very thought provoking post Chris. In my non leukaemia life I help companies of all shapes and sizes find ways to improve, including through their digital and social channels. If I had £1 for every time a business has been “surprised” that social is a 2-way conversation – 50%talking and 50% listening I’d be a millionaire and could donate some more to cancer research!
I applaud you for pursuing this worthy line and hope you can help more involved in the whole area of cancer support understand that they need to truly walk together in order to support us.
Thx so much Aileen. Yes of course social media is only truly effective when there is a two way dialogue, I am also surprised at how few understand that. Much appreciate your support in my quest to get people working together with the aim of making life better for people affected by cancer. Unfortunately there are still many other agendas on the table!
You have hit the nail on the head there Chris . Great post.
Thx so much Fiona. I see these issues so frequently now that the time for pussyfooting around has stopped! The patient should be at the centre of things, not locked out of the process. Best to you as always xx
Totally agree Chris! Happy new year by the way! (Is it now too late to say that?) x
Thx Emma and no it’s not too late 🙂 Hope 2016 is going well for you and Shine xx
Have a found a hierarchical clique in charity cancer support world..always turned down when offer my advocacy to big charity for free as well!
It seems collaboration from small orgs like mine with the big cancer charity clique is virtually impossible, shame!
This is the part that grates on me…am now doing teencancer mentoring, #chemo support & only the internet savvy find me!
Hi Kate, unfortunately your experience is very typical of what I hear constantly, which is what prompted me to share this piece. So many people who have personal experience of the issues and have innovative ideas to help solve old problems, are politely left chasing people who don’t respond or told that they don’t fit with current policy!
I am aware of so many fabulous services that are free for patients but so few people know about them. Larger charities seem to only be interested in their own brand and less concerned with what is good for the patient.
As you are well aware you have a very different perspective of time, when you are affected by cancer, and so many organisations are strangled by layers of management and suffocated by bureaucracy.
Hoping I can have some impact in this area in 2016. Keep up the great work Kate!
This is exactly what we were talking about the other day, Chris. It’s so frustrating at how ignorant some of these groups and HCPs can be.They’re also failing to give their patients the best care possible by not making them aware of all the support and help on offe, some of which is so much better than what they offer.
Only today I spent a long time on the phone with a charity who wants me to write about sex and cancer, both of us singing from the same hymn sheet to be emailed a list of criteria I have to adhere to, approved resources I have to use and to have it peer assessed by three different sources!They aren’t going to pay me to do this, I write for free!So sadly their members will not get that article as I don’t have time to jump through hoops for them, I just wanted to help their members with a topic that isn’t talked about, yet affected so many people with cancer.
I write free articles about sex and cancer to help people enjoy sex as healthcare professionals are so reluctant to have the sex conversation with their patients or offer them practical solutions rather than a 6 month wait for therapy or prescribe a pill. Hopefully we will get there but it’s going to be a long journey!
Hi Sam, thanks so much for sharing your own experience of trying to share valuable information with health care charities. The internet has made information much more freely available so the patients can actually find it if they wish. It would certainly be helpful for everyone, if they could at the very least be signposted to it. Healthcare doesn’t seem to want to opn their eyes to new ways of working unless it either fits within their brand profile or falls within their current strategy. Things are chaging rapidly now and there must be a place for being able to adapt quickly to new services that become available. In many instances, the people bringing the ideas forwards are patients that have experience of what is required. In the commercial world these people would be welcomed in with open arms! I’m glad you decided against writing the piece btw 🙂
Oh how I can totally relate to this!!!! I’ve had the same with charities Chris… So annoying #breastcancer #bccww
I had an interesting experience the other day that tracks with this conversation. I was asked how a particular charity spent it’s money. It’s annual report looked respectable–until you dove into the numbers. Under “program expenses” the majority of expenses were for extra staff! Only 7% of the money ever touched the patient and half of it was for brochures!!! Brochures??? Really???? How helpful.(/sarc)
In the US, we walk, we shop and we run to support all sorts of charities. The money mostly goes to bureaucracy and some research. None of this actually touches the patient, here, now, today. The absolute lack of empathy/compassion is unbelievable–or more sadly, perhaps its representative of the world today.
Looking forward to your new endeavors Chris!
Unfortunately the situation is very similar in many ways across the globe Pat. I have seen these issues here too. My feeling is that there is a large lack of transparency in the industry and it has been left to self regulate for too long.
The world is changing rapidly and the media seem to be on this case, and are now looking at how some of these organisations are run.
This post has been very busy as people are sharing their own experiences.
Hoping to go public with the new projects within a few weeks Pat 🙂