This year I am focusing on collaboration amongst patient supported work, and how we can affect the current poor outcomes for people affected by cancer. Despite the enormous amount of work and money that goes into it, our survival rates are still some of the worst in Europe. I call this a disaster and like most man made problems, this hasn’t just happened. It is the result of lazy healthcare organisations and a constant stream of politicians from all parties spouting no end of jargon, being massaged by millions of pounds and eager charities looking to further their own influence. Nobody within that cycle wanting to step out of line and lose a cosy career. We all know the increasing cancer figures yet still we can’t improve. Of course this won’t happen overnight, but I honestly cannot see any improvement in the immediate future.
This is a scandal in my eyes and I would like to unpick some facts, firstly about some of our charity giants. We all know that there are too many cancer charities, however I believe that this will change naturally as many will struggle to stay relevant. I would also like to say that I am a supporter of charity, and of course have my own, and collaborate with several nationals. But what I see in certain areas shocks me and I believe if people looked at the figures they would also be. I have taken these figures from the latest reports by the following charities, Cancer Research, Breast Cancer Care, Breast Cancer Now and Macmillan. (You can read the full reports if you just click on the links)
- Cancer Research: Total Income £647M. Cost of fundraising £108m (“VOLUNTARY FUNDRAISING (£108 MILLION) We wouldn’t be able to conduct our charitable activities without fundraising. We invest in a number of areas to generate income and think about how we spend and invest money carefully to maximise the returns to the Charity”)
- Breast Cancer Care: Total Income £16.8M. Cost of fundraising £6.7M
- Breast Cancer Now: Total Income £27.6M. Cost of Fundraising £13.1M
- Macmillan Cancer Support: Total Income £247M. Cost Of Fundaising £72M (“We actually awarded £13.5 million in Macmillan grants to 34,700 people.”) (Campaigning £25.1 million.) (“We campaign for changes to improve the lives of people with cancer and raise awareness of issues most important to them.”)
Sure, you can make figures say what you want them to say, and I am not an accountant, but I am a businessman, and I would not consider that the massive amount invested in fundraising is working as well as it should. If you look further into the detail of these public reports you will also see in relative terms how little gets spent on the actual people who need it. For example with Macmillan Cancer Support, twice the amount of money given in grants, is spent on campaigning! All of these organisations spend a lot of money on political lobbying, and they may tell me things would be worse without it, but I am no longer convinced. I see many charities courting politicians, but what is happening because of it? Are they just promoting themselves to increase their exposure and thus income?
What hurts me even more is that the four organisations named above, duplicate a lot of work under their own brand and have very little meaningful engagement with expert patients. Preferring to drive their own branded agenda under the ‘cover of night,’ telling us that this is what we need! They are always first choice with the media, speaking on our behalf. Yes, these are the people who are not even listening to us! Politicians are even worse. In my work, I get to meet many senior politicians who tell me they admire what I do and wish more could be done. Not one has ever asked for my help in improving things. Fancy trips to Parliament and expensive conferences are only impressive if they lead to something positive, other than PR. They do not!
So here’s the big question. Why do the biggest players in cancer care continue to ignore the real experts? The people who have experienced the system and continue to live it day after day. Can you imagine a business not listening to it’s customers? One key difference is that most of the money being spent is public and charity cash. Who is ultimately responsible for results? No one directly of course, and this is where the system fails. Most charity giants judge success by how much money they raise, not the impact they have. Politicians are rarely in the job long enough to care. It will always be someone else’s problem for them.
There are now a rapidly increasing number of people affected by cancer, including myself, who do not see these above organisations as relevant in their current form, and certainly are not required to represent our views to the media etc. Many small organisations across the country are totally fed up watching this farce being played out year after year. This year I intend to get further into this scandal, until patients are invited to contribute to decision making. Also you charity heavyweights, listen to what is being said, and don’t treat us as competitors to your income stream. We are people affected by cancer using our experience to help others, aren’t you there to help us?
I am aware that this is a delicate subject, but it needs to be opened up and people need to understand where their donations are going. That money is given with trust that it will be spent appropriately. I am not convinced that people really understand what that money is used for, and they can see a little clearer here. Of course the donors will decide, and rightly so! As always these are my experiences and opinions, please feel free to share your own below.
Hi Chris, thank you for opening up this subject, the figures are a shock. These large organisations are in business as money makers while an increasing number of people develop cancer and drug companies demand ever higher prices for treatments that patients are seemingly then denied. The system’s not working. I prefer not to donate to large charities, which is hard when friends take on arduous fundraising feats and I feel I want to support those friends. But I point blank refuse to be pressured into donating by professional fundraisers being paid a handsome salary to part me from mine. Deb xx
Hi Deb. I can no longer sit back and watch those sickly adverts on tv, trying to emotionally blackmail people to part with their cash. As we can now see, most is used to self promote, with just a tiny percentage used to do any good. Of course I do a lot of work in the charity sector including my own, and there is some incredible work being done with very genuine people involved.
But not only are these giants wasting so much money, they are arrogant to say they know what we want. How do they know, as they block us off at every stage? If everyone knew the truth this would be classed as a scandal, but few in the media want to cover it, with our lovely fluffy caring orgs have so much influence, who would want to question them.
Patient power is more powerful than anything, and once donors realise and their income drops, maybe they will listen?
So many incredibly knowledgeable patients totally shut out deliberately from the system. Cancer and politics is like smoke and mirrors for some.
Cheers for sharing Deb! xxx
Well done for good research into what, previously, would have been regarded as a scandal. What you say about where funds are being spent points to a very bad return, and I am conscious that I have probably contributed to this. Recently I was asked by Macmillan if I would like to become part of London Cancer Community (LCC), with first meeting in July. Since then I have attended 3 further meetings: one full day of ‘training’ in July, then two further training days at same expensive venue, with several trainers for seven people working all day. Then have had to fill in ‘application form’, in which I had to supply references – to do voluntary work! Then a massive launch at a very disabled-unfriendly City Hall for 150 people, and although there was coverage in Evening Standard, their Press Office hadn’t managed to get one mention of LCC – what were they doing? ! I thought I was joining up to do something to improve the appalling cancer care in London (survey placed 9 of 10 worst cancer hospitals as being in London). Seven months from when we started, I haven’t been asked to do one thing to campaign for better cancer care. Bizarre!
Thanks so much for sharing your own personal experience of Macmillan. Of course there is plenty going on in the cancer community in London, without Macmillan starting up yet another group! But of course it is purely about brand awareness as we know! Look at the cost of doing all this work! In 6 months all that fuss will be forgotten and hundreds of thousands of pounds will be added to the cost of fundraising!
They are one of the worst examples of big brands and self promotion. Both politicians and the NHS only seem to know that brand. Why? Because they spend a fortune on promoting themselves. Is it any wonder that cancer care in London is so bad? They have far too much influence in this sector. Why don’t they want expert patients involved at all? MMM… X
Hi Chris I was an ambassador for CRUK for a few years and I was truly shocked how much money they wasted. For example they have a yearly event for ambassadors at Westminster and pay for all the trains, planes, taxis and accommodation. I stopped doing it because I thought it was ludicrous. People who donate have no idea where their money goes
Thank you so much for getting in touch. Unfortunately this situation is one of the most common that I experience. I go to so many meetings where it seems that it is all about PR and not about achieving something. I do appreciate that there is a ‘long game’ involved, but I can see no results coming from that approach whatsoever.
I’m glad you felt able to share your own experience here.
I find it difficult to speak out, there’s got to be that reluctance in everyone?
Perhaps caused by the same fear that stops you seeking NHS improvements – you’re scared that it’ll impact your care/ work/ make you perceived as a ‘trouble maker’ etc.
I don’t agree with you so much on the accusations of individual laziness in politics/ charity etc. as I have met some good people. The problem comes from being paralysed by too many years working in corporate environments & losing faith that things can change.
A great article Chris and I wish you great success in your endeavours to get the giant charities to change. I fear the only way to achieve this is through Parliament, but what brave politician is going to stand up and criticise the giants.
Thx so much Ken. These days there are many different ways to do something. Previously politicians and large corporates could just block things but now the peoples voice is more powerful. Indeed many people don’t want to talk about this because it is all about money. But I can’t sit on my hands now. Happy New Year to you all!
I’m so pleased you are highlighting this Chris. CRUK spend very little of the fundraising on Cancer Research, and have you looked at their salary bill and what their executives earn from fundraising? Their advertising really winds me up because it suggests that CRUK fund the research that has saved the life of the person in the ad which is so unlikely. Most of the fundraising is sat in the bank. Recently, they spent millions on researching projects in Europe! The money fundraised in this country should be spent on research in this country.
Another charity called Together Against Cancer spends most of its fundraising in Guatemala and the Philippines on medical supplies for diseases other than cancer. (Heart disease in particular.) I thought they were fundraising for cancer in this country. When I asked about this, they refunded my donation.
There’s a lot of money to be made from cancer and it’s taken advantage of. Plus, the heavy advertising from the cancer charities distracts from many other worthy charities like dementia, multiple sclerosis, Parkinson’s, etc.
Well done Chris. I hope one day CRUK is investigated and exposed.
My question would be, with so many drugs that we know work denied us on the basis of cost what do we stand to gain from finding more?
I really think questions need to be asked about expensive patents where the research was funded by charities. There need to be conditions attached to research funding around cost affective access to the results.
We want to fund a cure for everyone, not just those who can afford one. Profits for patent holders should be strictly controlled and perhaps a share of the patent a condition for receiving funding.
Thx for your interesting question Val. There are so many questions to be asked about cancer funding, and I know that I have only scratched the service. My feeling is that we must continue with research at whatever level, as things are continually moving on. I agree also about the cost effective access. A cure for everyone, absolutely!!
Chris – this is a great question to ask. You, me & all the other cancer survivors care & it’s time for charities to come clean & stop competing against each other but this is n’t going to happen (unless they are forced to) because they are all desperate to compete for vital funds to save lives. There is a much bigger issue here & that is the powerful pharmaceutical industry which is kidding the public & courting the MP’s. Educating people about healthy lifestyles & moving away from a culture where we in the UK see drugs as the only solution needs to change. Chemotherapy has an appalling success rate. Great that you are looking to raise awareness & ask these questions to improve patient outcomes & drive a more customer centred approach. We are all grateful for the wonderful work that charities & their volunteers do – thank you.
Hi Simon, thanks so much for sharing your views within this discussion. Unfortunately we have both seen from the inside the many hidden agendas in the cancer sector. I have spoken to so many people who seem afraid to speak out, about these ‘big names’ and NHS, because they don’t want to feel compromised. Unless these issues get out there, we can’t solve them. Thanks so much for all that you do in your sector. there are so many like us that get totally ignored by the big boys, where we are seen as competition. Very best to you Simon.
The ever excellent @christheeagle1 takes the gloves off to challenge big cancer charities’ use of resources + failure to listen to the most important people – those they’re meant to be helping. I recognise a lot of what he says; what’s your experience? #cancercharities #patients
I know we’ve talked a bit about this, Chris – well done for putting it out there. There are lots of fab people working for these big charities, but I fear you’re right that at top they get too corporate + ‘selfish’ (hogging resources), without adopting ‘corporate’ customer focus
Thx so much for sharing George. Many people even feeling guilty to speak out as they are #volunteering with these organisations, and of course are being treated by #nhs
Agree – people don’t question enough. My point was that it’s more complicated than not wanting to step out of line to threaten a cosy career, or laziness. The workforce aren’t empowered just like patients. So much disillusionment out there!
Hi Laura, that’s a very important point you make! Of course we come from a totally different perspective. For us this work is a passion, but for the staff it is a job, which is very different. But that is why I struggle to understand why they are against harnessing the natural enthusiasm that many patients have. Unfortunately there are so many hidden agendas in the cancer sector. Politicians, pharma, charities. All ultimately about cash sadly.
I have had cancer, worked with 25+ corporates running cancer trials pver 15 years as well as academic research organisations and am an ambassador for cruk.
Ive seen a lot of money spent but there is so much regulation and oversight, compared to 20 years ago (for example) I don’t believe there is much corruption. I think it’s good that cruk pay for ambassadors to have a night out and that money might come from my or my friends donations is ok with me. I deserve a night out! Cruk run lots of trials and the people that work on them care hugely. There are dishonest people in every company but just because these guys are doing what they do well, shouldn’t make them a target. Being specific about trials that are a waste of time and money would be more interesting but even then you’d find that it a probablybduw to a dosing change and that vendors are costing x or y a d that is why the trial is needed. Is money being wasted? Maybe, probably….but not deliberately.
Thanks so much for sharing your obviously vast experience. It certainly sounds like you deserve the odd drink out. Of course we need all these things that charities do, I personally have also benefitted from research into rare disease. I also agree that staff/volunteers should get together in a social setting, which is a very important part of working in an organisation.
I am also not inferring that there is any dishonesty involved of course. My main point is that a vast proportion of donors do not really understand what happens to their money. Of course funds must be raised, I have to do that for my own charity. But I do know from this piece that many people are unaware how much money gets swallowed up in FR. “Not deliberately” is well put.
It’s always good to feature all the different perspectives and keep up the good work!
Great writing Chris! Have shared and added a long comment to it on Lylac: Live your life after cancer page. I assume you know that charities don’t pay tax? I always had this vision of the UK being a vessel with holes in the hull. Those holes are filled with corks, representing charities. They keep the vessel afloat. The vessel would sink thought if you remove those corks…. the dependency on charities is mind-boggling. Charities are solving ‘problems’ within our society that should be government responsibilities, and the better the charities perform, the lazier government gets. Etc. etc. My view, from a Dutch perspective.
Hi Isabel, delighted that you enjoyed the piece, and thx for joining the discussion. There are many profs/patients feeling uncomfortable to go public on this issue, but I couldn’t stand by and watch this situation get worse. I like your analogy 🙂 I have read your piece on LYLAC and have copied it as a comment on my blog, where people can follow the whole debate. That example is very indicative of all the things I see and hear. As you point out we all need charities but not ones that don’t listen and pretend to speak on our behalf. We also work by collaboration only not dictatorship! Keep up the great work that you guys do!
So true!! I tried to raise this issue a few months back but couldn’t find the right words for it, and was even asked to remove the post as it seems to have been too offending! Such a delicate topic for sure!
“A study of leading cancer charities by Manchester Business School found that, in 1997, just 65% of the money raised was spent on the cause, compared to 90% in 1992. Across all charities, the average was 67% spent on charitable causes in 1997, compared to 80% five years earlier.” (The Guardian). Like you mentioned Chris: where does the money go?
Often people think/assume that LYLAC is also a charity but we are not as we would spend too much time on fundraising, competing against the 400+ other cancer charities in the UK.
We don’t believe in competition, especially not in the field of cancer. We believe in working together, we want to cooperate, adding coaching support to the menu of the existing services of cancer charities, as most don’t offer this. No competition, just adding value. This has been an ongoing process for many years, with hardly any results.
We’ve built cooperative relationships, we’ve lost them again also. We used to work for years with Breast Cancer Care (BCC), delivering a part of their Moving Forward courses. Not anymore because we charge for our service, a service that we’ve created by investing our own time and money, using our own cancer experience and coaching skills. Not that we didn’t perform or that we didn’t create impact (feedback on our topic was often the best received); just because they expect everyone to work for free. Is there really no money in the kitty to pay for professional speakers or workshop facilitators with their wealth of personal cancer experience and know-how? Local health care professionals (paid by NHS) now have to deliver the ‘meat’ for their workshops and offer their time for free to BCC while not spending it on their patients. How odd can it be?
The good news is that a few charities are open to embracing coaching support, and we’ve been successfully working together for years with e.g. The Living Tree and Macmillan Support in Portsmouth, where patients, carers, survivors and their needs are taken at heart and where we have been welcomed to deliver the positive, long-lasting impact of coaching.
LYLAC is too small to change this big ‘charity world’, we just trot on, and help as many people affected by cancer as we can in our own practical coaching way. And sorry, yes, you have to pay a modest fee for it, because we are not a charity.
Hi Chris. All of the big charities are at it – the British Legion is another. I volunteered to be a public speaker for CRUK a number of years ago and had a day’s training in a magnificent building in Regent’s Park, with M&S sandwiches thrown in at lunch time. I was NEVER given any speaking engagements of any note, except making a presentation of a thank you letter to a Masonic Lodge and a small event at a school. However, I was invited to an all day jolly and lunch at the Emirates Stadium and an evening bash in a Fleet Street pub. I still think the world would be a worse place without these charity giants, but do feel they get too used to spending their income where it is not supposed to go. And then of course there is Oxfam…… Bob (from Purley)
Great to see you on the site and thanks for sharing your own experience. I am not anti charity of course, and I agree the world would be poorer for the big boys not being here. My issue is that they are not transparent how they spend their money. So much goes back into advertising, to increase their revenue. Most of the money could be spent better on the people that need support.
Importantly, charity giving is a very individual thing and most of us have our favourite charities for whatever reason.
The big ones do seem to be very wasteful though! Cheers, Chris