We are so far only one month in to 2017, and I can say that in terms of my cancer work it has been an incredible start. I have frequently talked and written about the frustrating lack of collaboration in the cancer sector, and unfortunately that is still the case now. Large brands only interested in their own marketing and income streams, and the N.H.S going from one crisis to another. Many years have passed since I started my own cancer journey, and my business skills have shown me a very different way to help people affected by cancer. Not just the patient but also family members etc. We ( Your simPal) wanted to provide help directly to people, with all money raised being passed back to help others. Most importantly for us we wanted no red tape to hinder progress as people with cancer need help now!!
With Blair, my partner in this venture, we believed that much could be improved, and we wanted to be very different to other organisations. We do very little advertising and are happy for the word of mouth to speak about what we do. We love collaboration, and have found many wonderful people who also feel the same, so we are delighted to share our work for the benefit of patients. There seems to be now another support hierarchy appearing. Those of us that are smaller and specialising, are now looking to work together to get the word out there. Breaking the stranglehold of many inward facing charities, who have a financial monopoly and a fear of sharing!
We are able to innovate, and with the aid of the Internet we can reach patients directly and no longer rely on attempting to get our work shared, by those who seem to feel we are ‘competing’ with them. As an organisation we are being approached daily, by others that want to help us and be helped by spreading news about what they do. Social media has unlocked the secure ‘gates’ the large health organisations relied on to keep their supporters to themselves and starve them of resource supplied by others. Despite the fact that we offer a service that no other organisation in the world does, we are ignored by most of the large cancer charity cartel.
As each week goes past our service gets busier and busier, and we are even asked to go into schools to talk about what we do. We are helping families and many people with terminal illness. Just making a simple difference to people who have nowhere else to turn. Through ‘cancer poverty’ these people have no money to pay their bills and are being evicted from their homes. Thankfully the commercial world is very much aware of what we are doing and I am meeting weekly with large organisations who want to help, and are very aware of their #CSR Corporate Social Responsibility.
But my question still remains, why don’t the large cancer charities do more to collaborate with other organisations? Of course many give grants, (crumbs from their table) but don’t really interest themselves in sustainability and business plans. It seems these days if we give money to something, that should be the end of the story? All they have to do is make people aware of the services that exist, and help their supporters further. No cost to them at all!! There are so many cancer support resources in this country that cannot be heard above the publicity din made by multi million pound campaigns.
My own view is quite unique, as being a long term patient and service provider I get to see all perspectives, and my frustration is that with a bit more working together ,life for patients requiring cancer support could be a whole lot better. All services like mine are commercially supported and require little money to keep them going, relying mainly on the incredible goodwill of professionals and volunteers, receiving donations as we go. All we need really is the publicity to let people know we are there. Ironically many services struggle to survive because people don’t realise they exist!
I am delighted at the speed of take up for our service from hospitals and we are now connecting people across all parts of the UK. This has happened mostly by word of mouth from many of our good friends, but very little from the charity world in general. In my opinion these corporations are slowing the speed of innovation, as they are getting caught up in brand politics and egos. With social media being invented for easy sharing what stops these guys from pressing the share button for any of our work?
Unfortunately the sharing culture seems to exist very rarely in the cancer world, despite the very obvious need for it. When I listen to issues on the news regarding cancer all I hear about is money. It is so much more than that, there is a political and selfish core to it, that no amount of money will solve. Of course it is all a very personal choice how we donate our money, but I am seeing a gradual change from the public, who are now considering their options more.
Of course charities do a lot of fine work, but many need to go back to their roots to find out what their customers need today. Communication is a two way street, it is not only about broadcasting ‘fundraising asks.’ Lets look more at the larger cancer picture, TOGETHER?
As always these are my views, please feel free to share yours below.
Picture Scrooge counting every penny. You now have a visual for why I no longer donate to larger cancer charities – ones that appear intent on wringing everything they can from the public. I accept that this may be an over-simplified view on my part but, like you Chris, it’s my opinion and I’ve stuck with it a fair while now. There needs to be more collaboration, more genuine help like yours for cancer patients. I know whose side I’m on. Keep up the good work is all I can say! xx
Indeed Deb and thank you! The ones I refer to have so many employees pumping out their own information, as we both know mostly aimed at fundraising and brand awareness! How much would it cost to share work from others? Their supporters would have a lot more varied resource than they have now.
We are dealing with people who have received no practical help from the well publicised organisations and are desperate by the time they find us. So much can be done earlier in the patient journey if these organisations would share and collaborate.
It is clear we have similar views on this Deb and thanks so much for your support, Chris
Chris highlights something really important here. Please, if you have power to change this, please do. If, like me, you are a small part of this jigsaw, take heart and keep being the best you can each day and with each person, sharing skills, experience, compassion, learning, stillness, collaboration and an open, humble heart.
Nicely put Leah. There are many of us out there, all small pieces of the puzzle, and that is what frustrates me when I talk to people who are at the end of their tether, who can’t find us! The large organisations seem quite disinterested in what is happening outside their own door. With all the tools of communication we have this is shocking but not unexpected. Many have forgotten that they exist to serve
The Canadian @cancersociety denied me assistance in 2008 while my child was receiving unsuccessful treatment
We couldn’t agree more. It seems some have forgotten our common aim; to help improve the lives of those affected by #cancer.Yes, we’ve had the same experiences. Smaller charities need to come together to have their voices heard. Thinking caps on!!!
I agree…Many large charities feel threatened by us who work independently & refuse to toe the line – I’ll always be a maverick…thank god.I’ve tried to collaborate -but some have become like an extension of gov – was told what question to ask to a minister-that was me gone…
Chris totally agree and @Linktheribbons was set up specifically for this reason. Collaboration is the key to success.
We need more #collaboration in the #cancer support sector. Many small charities & orgs have a vital role to play but are being ignored
So agree! Us small charities collaborate but not poss with big organisations. Not for lack of trying. Huge loss for patients. Smaller cancer charities are often closer to patient issues. Large organisations ought to use this and help maximise voices.
But it’s changing as many agree we can’t act in silos. We all have purpose. Those who see it will do well #StrongerTogether
Great post Chris – More focus is needed on the ’cause’ as opposed to the ‘business’
An excellent article. As we discussed, getting larger charities engaged is difficult as they can’t make decisions quickly.
Very hard for us to get noticed by #cancer charities because we’re only a N4P org. Ignoring us does nothing to help #wombcancer patients
Excellent blog, some charities do offer support but many ignore valuable work being done
Smaller charities can also provide help that bigger orgs can’t, collaboration is best for everyone
Love this it is all about collaboration and the main reason is to support those with cancer. Great post!
This article and the comments are music to my ears. I’m Chair of a Cancer Patient Partnership in England and have first hand experience of being patronised – and sidelined – by one of the large cancer charities. They appear to have little desire to work with other, small charities like ours and try to apply their national, generic way of doing things to local communities, which frankly doesn’t work for anyone other than the HCPs who provide counselling and hand out generic information at acute stages of the cancer journey.
Once patients are back out in the community though, when local resources are needed, the charity can’t do much to help. Currently it is trying to focus more on cancer rehab, but if only for geographical reasons that isn’t very practical with their current national/generic structure.
Our group consists of health professionals, cancer pts and carers, and a variety of reps from local tumour site specific support groups, PPGs, and other local cancer/healthcare resources. We act as an information hub for cancer resources in our city and the charity concerned keep a close eye on us because we’re doing a good job. But they steadfastly refuse to re-examine their own charity model and build a local service from the bottom up, rather than from the top down which is what WOULD work.
I can’t be Florence Nightingale and run around nationally spreading the word on how to do post-cancer care, and neither can any of my fellow group members. I would love nothing better than for this or another large charity to take up the reins so that local post-cancer support could be developed in many communities, using our simple, cost-effective methodology. We haven’t got the resources or the people-power to do that, and in any case the whole point of our existence is to focus on our own patch.
NB: Out of interest, our relationships with many smaller, local charities are excellent and we are working with them on a variety of allied projects, including the Look Good, Feel Better workshops in partnership with a large local breast cancer support group, a post-cancer rehab workshop project with some local GP practices and PPGs, and some interesting work with a local paediatric cancer charity.
Yours frustrated from somewhere in south-central England!
Firstly thanks so much for sharing your experiences, none of which surprise me unfortunately. Secondly the organisation I’m sure you are referring to, are well known for working exactly as you describe. I also have the same situation with no collaboration whatsoever, not even a tweet to share my work.
I have never experienced such a total lack of collaboration in my work place before I got sick. Even competitors can work together for the greater good. My personal view is that many large charities in healthcare have created a cartel and it is all about money and fundraising now, with shallow words and generic replies from their websites. They only seem interested if there is a fundraising opportunity.
If only the public were fully aware of what was happening to their money! I’m doing my best to change this situation, but many people keep surprisingly quiet??
Happy to have a chat at some stage if you have time, Chris