For People Living With Cancer

Is There A Cancer Charity Cartel?

Is There A Cancer Charity Cartel?

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.

The Grove Hotel Bournmouth
 I am very pleased to be an official Support Partner of  The Grove Hotel in Bournemouth, which is the only hotel in the UK specifically for people affected by  cancer.
12 Comments
  1. I think you know my views on the big cancer charities by now Chris. It saddens me that so many cancer patients are left without the ongoing support they desperately need, especially when their treatment has ended and their safety net of regular hospital visits comes to an end. Being able to access support when you need it is vital for emotional and psychological well being and when a well know cancer support phone-line only runs Mon to Fri (& not on Bank Holidays)that can be upsetting and frustrating for some, especially those without a close family/friend support network around them.
    So many small cancer charities and organisations are feeling the pinch, especially when it comes to funding to do their work. Everyone is feeling the pinch so donations are drying up and people are more likely to donate what little they have spare to a well known charity. It does seem that with some of the bigger charities the brand is more important than the service they provide and that surely can’t be right.
    Social media has opened up a whole new area of support which can be accessed as and when the patient needs it. You can usually guarantee that if you post online in one of the many forums at 2am in the morning you will find someone else there willing to chat, and very often that’s all people want. To be able to talk to someone who knows what they are going through. This kind of support will never take the place of “real world” support as I call it, but it should complement what is already there. We are all different and need different levels of support.
    All we can do, as small charities and voluntary organisations, is to continue to focus on supporting the people who come to us and offering them the kind of support and help we would want. There are so many of us about these days and if we collaborate more and support each other in what we are doing then I believe that can only be a good thing.

    • Hi Kaz, I agree on all counts and your experience are mirrored by my own. Traditional services are no longer doing it, and new ideas and ways of working are the order of the day. The problem is that these organisations spend so much on marketing that the average person only knows those names, and are not encouraged to look elsewhere.

      The same applies to fundraising. People see these very professionally filmed emotional blackmail adverts and give their money to them. These brands are strangling many good services, as they are only interested about how often they hear their own name.

      Although I have many private communications about these issues there is still a resistance to talking or writing publicly. I don’t want people to think it is only a few of us constantly moaning. So need some more experiences to be shared here.

      We do indeed have a great community online Kaz, and through Your simPal we are seeing first hand what patients really require, and that is a more personal support. This is certainly something that the large organisations can no longer do, with their massive corporate structures.

      Thanks for your support across all the cancer work Kaz, your help to all of us is invaluable!! XXXX

  2. Chris,

    It’s not just in the UK. Here in the States, I think the large charities are very removed from the patient experience. One, which shall go un-named, claims that 76% of their revenue goes directly to helping patients.

    FALSE.

    If you go through their financials, buried in every category, are huge amounts of allocated to staff and overhead. Again and again in every category. Their overhead is massive and in the age of the internet, they, like most not for profits, operate as if it’s 1980. It’s all about them. The human experience of cancer isn’t part of their experience bank.

    Add to that the fractured environment where everyone thinks they are competing for every dollar, and it’s not a pretty sight. This market desperately needs innovation. But to innovate means risk and money. Surely risk and money with the return of helping people are not mutually exclusive! After all, nearly half of us will have a cancer diagnosis. No one is untouched.

    Good luck! Carpe diem, today and every #anticancer day! Follow me on http://www.CancerRoadTrip.com @CancerRoadTrip. I’m about to take off on the trip of a lifetime! I’m tired of fighting the powers that be. I’m off to travel, to play and to share. Talk soon, Chris.

    • Hi Pat. Yes indeed, many charities around the world operate in a similar way. Quite shocking really, but I guess by giving, people ease their own conscience a little, but do not really check how the money gets used. The sector is extremely bloated and dominated by self interest.

      Most are not interested in promoting any service outside their own brand, hence the market is flooded with lots of generic information. But currently the big are getting bigger, and their is little time/cash given for local services.

      The staff bump around from charity to charity with very few having their heart in the cause. There is no hunger to try innovative ideas at all.

      I love the fact that you are ‘making a break for it’ and look forward to hearing more detail! Carpe diem to you too Pat xxx

  3. Excellent blog Chris. I feel the same as Kaz. You, she and so many others are offering free advice, help and support, often with little or no funding which is completely overlooked by many large charities. Kaz said Womb Cancer was left out of a recent Macmillan booklet despite being the 4th most common female cancer! Also some of the content on their websites is too generic when people need specific advice, sometimes incorrect and often offering advice which may be harmful to health too. As Kaz says, social media is making a difference to how people access information and come across charities like yours and it is where I met you both. By hopefully continuing to collaborate together we can make a difference to those who know about us.

    • Macmillan also refused to add WCSUK details to their website in the “support” section because they said we offered nothing different to them!! Well, we offer online support 24 hours a day, 7 days a week not just Mon to Fri 9am to 8pm. Are cancer patients not supposed to need support at weekends or Bank Holidays?
      As you say, without social media none of us would have met each other. You have provided advice to my ladies and some of them have also made use of Chris’s charity YoursimPal. By working together we can make a difference to so many people.

      • No surprise unfortunately Kaz! They don’t share the news of Your simPal service either despite many of the centres around the country using our resource! They don’t share my community work either, not even a RT 🙂 There are plenty of others like that too.

    • Thx so much for your comments Sam, and of course I totally agree with them all. My experience is showing me that there are so very few local services working effectively with any large cancer organisation.
      If they are interested in a service that is not their own, they will want to brand it as if it is. Unfortunately, they have become so big now, that they have taken their eye off what truly matters. So much resource is used in just trying to run the organisation.
      Focus groups and trials that go nowhere. No meaningful long term engagement with proactive patients. Raising more funds seems to be the eternal goal. Things are changing so quickly, and I wonder how in the long term these corporates will be relevant, as unless you embrace change you will be out of the game. The way you engage with others is the key in a forward facing business.
      I am so glad that social-media has connected us all and we work so well together. Shame the big boys can

  4. Interesting post Chris. As you know I help out Macmillan but providing direct support to patients rather than any fundraising role. And I was once a Cancer Research UK Campaigns Ambassador – for all intents and purposes, an MP lobbying task rather than fundraising. I gave that up to focus on my own cancer projects.

    Having worked swith people at the coal face in both organisations, I found they are very committed. But they are so big and manage such large donations, they are very very much like a corporate organisation (i.e. like a business). Macmillan has been very good to me and shared my own projects several times. I didn’t get that with CR UK though.

    As for my own cancer, both organisations need an update of information. In terms of a willingness to listen to ‘outsiders’ about the accuracy of the cancer information on their sites, Macmillan are ahead by a country mile.

  5. Hi Ronny, great to have a man of your experience join this discussion. You are doing some incredible work within your community, and I would certainly class you as an expert in your field. Why would health organisations not want to share your work?

    Your perspective is very similar to my own, and I do work with most cancer charities in the UK,generally sharing experiences and information. So I also speak from personal experience, and am delighted that you feel you received some support sharing your own project.

    Personally speaking CR have never shared anything of my work at all, and I don’t know anyone else who chooses to work with them. Macmillan have shared nothing of mine for many years. These are professional organisations with marketing and promotion staff being paid a kings ransom. I have my own charity of course, which helps people across the country, so why would any cancer organisation not share info like that?

    It is not a competition of course but there are so many community organisations struggling to get heard. The only voices we here are national charities telling us that things must improve. Generic information and large corporation politics will no longer cut it for people affected by cancer.

    Keep doing what you do Ronny! Thanks, Chris

  6. this is very informative about cancer charities, it’s very disheartening people enriching themselve with cancer funding yet people are suffering

    • It certainly is a difficult sector Tanui! So glad you enjoyed the piece.

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