I have heard this expression for many years in the charity sector. As our world has become more divided and diverse we see more groups being created. Personally I’m not a fan of this way of working but I do understand why it exists. My feeling is that in a very divisive society we should focus on what we have in common, cancer is now one of those things!
However, we have so many different organisations. Created by sexual orientation, colour, nationality, male, female etc. There is also now the issue of vast inequalities in our sector, including the extremely important area of clinical trials. Giving us the post-code lottery effect, and the increasing rich/poor divide. Our giant charities are also involved here. Watching on with interest as all the groups break away from the regular ways of working. This situation has occurred over many years. But since covid entered our lives many of the traditional ways of working are no longer appropriate.
Our large corporates have little idea how to transform their ways of communication, and their relevance gets less by the day. I’m seeing surveys daily, as many seek opinions from their audience who had switched off years ago. Nobody listened, as we told them their methods were outdated and no longer appropriate. Always thinking they knew best, with no appetite for listening or change. I describe that way of working as arrogance.
These niche groups are now referred to as the ‘hard to reach communities!’ Has anyone asked themselves if their communication is suitable now? I don’t believe there are many that are hard to reach. That is only the case if they don’t want be reached. Our charity giants and NHS use this phrase as a common excuse. We don’t only want to hear from you with your latest campaign or yet more fundraising asks. Engagement works both ways and I have seen little attempt at that. Many patient groups no longer rely on out of touch charities to help them. You are now not relevant to a big portion of the cancer audience! This recent communication from Cancer Research has prompted my piece.
It started with these tweets. You can check out the role profile here and make up your own mind.
Am I the only person who got bored after reading the first few sentences of this? I do appreciate that you need to explain what people might be signing up for, but this certainly doesn’t feel like a welcoming document. Especially given the fact that many of the target audience will not be used to working in this way. This is yet another corporate communication from an organisation who is further away now than it ever has been, from talking to the people who should be at the centre of their work.
Is it any wonder there are so many health inequalities, when most of the communications look and feel like this? Patients have got so tired of listening to the same tunes from these companies, we have chosen to work on our own. With many small impactful and innovative groups springing from the cancer darkness. We don’t have corporate teams and millions of pounds income but we are changing the landscape.
Personally, I have no working relationship with either Cancer Research or Macmillan Cancer Support as we have different ideas about what people affected by cancer need. But against my better judgement, on this occasion I decided to share the above tweets to be helpful. That released many private messages from small organisations up and down the country as to why they would never work with these people! No surprise there, but I had remained ever hopeful of collaboration in this sector.
So after many years of this work and nearly two years of covid, I have concluded that nothing at all will change whilst we continue with the same structure we have. Both charities pre-virus received a combined £900 million+. Is it any wonder they are not interested in change? Is this above request yet another tick-box exercise?
Now I am seeing so much hard fought progress in the sector disappear in front of my eyes. Every organisation working just to survive. Everyone talking about the need to work together but nothing happening in reality. I am likening this to the global climate issues. The world is almost prepared to eat itself because of so many different agendas.
With rapidly increasing numbers of people affected by cancer it looks like we will be entering ‘every man for themselves time.’ If the above is the best we have got, then we really have window dressing and no substance. Something I have felt for a long time in this corrupt sector. Don’t forget that ” together, we will beat cancer!” It must be true, they tell us in their videos.
As always these are my personal views and experiences and please feel free to share your own below.
I too am tired of all the different charities that are supposed to be asking help for the same “problem” why oh why don’t the small ones join together but not too large or the same thing will happen again. Get off the bandwagon of big is the best. As always I enjoy your community love to you and your lovely family. Georgine x
It’s so lovely to hear from you. Yes, the charity issue has become a real question now. Of course we need some, but not necessarily in the form that we see now. Community/National we need both, but working for the good of their supporters. Not dictating and broadcasting because they can. I believe that currently many charities are part of the problem and not the solution.
Big love from mine to yours as always, Chris XX
Interesting piece, Chris. Thanks for sharing.
Thank you Shirley, I’m pleased you enjoyed it.
Really interesting and relevant article on how out of touch with the needs of patients the big cancer charities are.
Thanks so much for sharing Lesley. They tell us they represent patients? Very much part of the problem and certainly not part of the solution.
It’s the endless surveys I despair about! And was shocked at the amount of money they get each year between them- what on earth are they doing with that cash? What’s their spend:good deeds ratio?
#Cancer is an incredible business for many Lesley. Using fear to increase incomes, from pharma to charity. With people affected increasing rapidly, they have a growing audience. The charity pound decreases dramatically in value once the corporates get it
UK patients regularly contact Breast Density Matters UK (a patient advocacy in FRANCE! with access to imaging experts/medically sourced resources). They want answers to questions, health transparency & importantly someone to listen to them.
@CR_UK @BreastCancerNow #LetsBeHonest
Spot on there Cheryl! Honesty and transparency are 2 ingredients missing from the #Cancer giants. No hope for improvement or change until their income drops significantly. Biggest concern is always ££££s
Thank you @christheeagle1 for writing this. Breast density education is supported & shared by medical organizations; European radiology & patient advisory groups. Health information & informed conversations can potentially save lives. Charities need to listen #TooBusy #HeadinSand
Charities should read this & go back to why they set theirs up in the first place. If they have grown into a monster of just fundraising or be focused on not listening to the patients & adapting they need to relook are their aims… #cancer
So well said Chris!
Thank you Marie. I see little sign of lessons learned from all the giants. Incapable of change as all target driven with patients rarely the priority.
Very large, semi large #charities do a great job for overarching advice, or very specific help, such as #benefits helplines.
But for detailed understanding or peer to peer support, nothing beats disease specific groups.
Bigger charities should signpost to them to help #patients.
All about egos and income I’m afraid. How they can help people affected by #Cancer is rarely the main focus. Until this changes everything in the sector will remain chaotic as it is now.
The need for disease specific #charities is understandable given how heterogeneous and specific many #Cancers have become. In same way as oncologists and haematologists subspecialise. Important to recognise, value and use each others strengths and SIGNPOST #StrongerTogether
I’ve always said, best to support the smaller front line user led charities, this country would be in even more of a mess without them.
I run one of those Tony so I know what you mean! We do need larger charities btw, but not necessarily in their current guise. These guys want to dominate the sector for their own agendas.
I walked 2355 miles for a large Cancer charity back in the mid 80s, I plan to repeat that walk, but next time it will be for smaller charities like @ChasingStigma
Donations really are the key to change Tony. Important we all consider carefully what we want to achieve with our charity giving. Of course money is needed and is important to what we do. But not at the cost of trust and goodwill.
It seems with the big charities the main focus is always raising funds when helping/supporting patients should be the main priority. @WombCancerUK is often contacted by Macmillan nurses who want info in order to support patients because they feel we offer better support/info.
Indeed Kaz! We also work with #MacmillanNurses who understand better than anyone that their organisation only has a proportion of the answers. They are very far from #Cancer gurus. Of course there are many other experts!!
Yes Chris – thank you for voicing this! Such little interest in the actual people so it feels like an EDI tick box exercise!
Thank you! Major organisations are so out of touch and I don’t see a genuine desire to change. Everyone earning money from #Cancer. Little thought for the patients
Really interesting. National patient orgs also need to think hard about their roles and relationships vis a vis patients, users and carers.
Thanks so much for sharing David. Our world is changing rapidly, not sure if #HealthCare is aware?
Not only cancer, in touch with a Stroke charity regarding someone and they were giving out numbers either no longer in use, no one answered or answer phone. Very frustrating!
It certainly isn’t only cancer Jackie. The entire sector needs a shake up to see if the way they are working is suitable for their audience. Many are not innovative or agile enough.
I totally agree – I was naive about some of the big warm & friendly #cancer charities until recently. They don’t serve patients as well as they might and indeed *should* – it’s a sin!
It is indeed a sin Jennifer! Maybe they stated out as ‘warm and friendly,’ but they are now cold and calculating. Focussing on the vulnerable to increase their cynical #Fundraising.