Those of you that are regular readers of my blog will know well that I am not a lover of large cancer charities or healthcare organisations. Simply because, most are run with self interest at the heart, focussing mainly on fundraising and brand awareness. With little or no interest in collaborating or listening to innovative ideas from outside their own brand. This sector is now dominated by the same few names, who have a bulk of the funds to promote themselves more often. They are now the same faces who pop up on our television or in the media, talking about how things should improve. There now exists a cartel of charities which doesn’t listen to what is really going on for people affected by cancer.
Many of their ideas are stale, due to the corporate ways of working, where no one wants to make a decision. Also their refusal to listen or collaborate with organisations working closely with patients, who really understand what is going on. Things have progressed dramatically since the Internet, and we deserve better than being signposted to branded publications, forums and helplines. There is very little desire to share resources of another organisation. My opinion is that this all based on fundraising. Charities are even worried about who you decide to leave your money to? Hence offering ‘free’ will writing and advice. This is causing a very insular service which is certainly not there to benefit the patients and families.
Services should be collaborating to help, not just plugging their own brand. After all none of us can do everything! Surely we do what we can, then signpost to what we can’t? I write from my own broad experiences of working with the charity world, and constant conversations I have with people working in the sector, large or small. There are so many wonderful smaller resources out there that just do not get a mention and struggle, with no marketing budgets. Make no mistake, this situation is getting worse. As we are all aware, each case of cancer is totally unique and we need to find new ways of supporting people. How can this happen if our cancer cartel is getting stronger. All duplicating many things because of ‘brand ego.’
There is of course a need for national work, but there is also an important need for strong work in the local community. Unless there is a greater will from national charities to work more sympathetically in their communities, these resources will wither and die from lack of support. This will remain stale unless these organisations look closely at how they work.
I wrote the piece “Why the lack of sharing from cancer charities?” recently and have just received this new comment, to highlight what is actually happening within the ‘cancer support sector.’
“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.”
Thank you so much for taking the time to share your experiences, and I find this situation incredibly frustrating, as you obviously do. There are now some incredible resources out there, struggling to be heard over the constant large charity appeals. This is not about money but a culture change for the greater good! Please feel free to share your own views and experiences below.
I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions.