My last few weeks have been spent speaking at numerous events and also dealing with the long list of people who are contacting me with their frustrations of the current cancer system in the country! Personally I have become bored with the lack of interest from the three biggest organisations in this country, who are the ones that people naturally contact when talking about cancer care. It is no surprise to my regular readers that the NHS, Cancer Research and Macmillan Cancer Support are the ‘cartel ‘ that I refer to. Through the frequent conversations I am having about the lack of progress within cancer support in this country, these organisations are at the heart of it. The theme is common, the organisations rarely respond, and if they do, they are not interested in ideas that come from outside of their companies.
This closed way of working is now starting to cost lives in my opinion! The three organisations I mention, have become intertwined, with many of the top players moving from charity to #NHS or back again. This applies strongly to Macmillan, where a lot of their ex staff now have senior rolls in the NHS. If you add politics to the mix you can see that we will be pushing the same old ideas round the plate, while all involved in this process are handsomely paid for failure as our results in cancer continue to get worse. The system we have, allows no individual to be responsible as they all move round on the staff roundabout to a new role, and so it continues.
I am involved daily in innovation, either in my personal capacity or through our simPal charity, using technology to connect people across the world. All three organisation refuse to even listen or share. This is happening not just to me but almost everyone I speak too. They are working harder to protect their own brands than they are to seek new ways of solving old problems, which is dreadful use of public money, given with trust that it will be used for the right reasons. As the cancer numbers rapidly increase, and with limited resources you would think that they would be delighted to have the offer of help, but unfortunately we are classed as competition for funds, and the door is shut in our face.
In recent years Proton Beam Therapy treatment has come to my attention. I am now involved with several organisations that offer this therapy, which unfortunately is mostly private due to lack of machines. I am speaking daily to people who have had this treatment, yet I know that the NHS is doing all they can to avoid even talking about it’s existence. Yes there will be two sites offering it in the UK, but it will be many years before it can be used for the general public. This is a treatment being offered around the world for many years and we talk about not having reliable evidence? I have no doubt that like most things there is a problem around funding such an expensive treatment, which I totally understand, but let’s have more clarity and transparency.
Increasingly I am seeing incredible innovation, from giant machines to small retail products that can improve the way we deal with cancer. Yet very few of these are signposted to by the ‘cartel.’ So what if your organisation doesn’t market them, at least tell people they exist! Surely we are all in the same business which is helping people affected by cancer? It seems not, as money speaks, just like in every industry across the world. These guys are becoming more and more detached from what is actually required. The world is changing rapidly now and I believe that these behemoth organisations are stuck in the past. Their massive management and departmental structures, not allowing them to be ‘agile,’ ensuring most of their key decisions are out of date by the time they are ready to initiate them.
I was recently speaking at #HNCCONF2018 in Nottingham and talked to many private companies offering incredible things for patients. But the patients weren’t aware of them because of the current structure. What a crazy system! In my early days, I was told by my hospital, not to look on the Internet, but if I’m honest, it is the only way of finding what advances there are for cancer patients. Even my great friend Brenden who runs the wonderful Grove Hotel, the only hotel of it’s kind in the country for people affected by cancer, is not signposted by any of these guys either. Yet another disgrace! Politics, brand and money are at the route of these issues, with total lack of clarity, particularly by the charities on how your donated money is spent. Who do you think pays for these massive TV campaigns telling YOU how good THEY are! If they were that good, they wouldn’t need to keep telling you!!
Now they are pushing things further, with FREE will writing services. I believe this is a massive conflict of interest, by persuading people who are vulnerable to leave money to them. But legacy is the biggest income for both of those charities. Ultimately it is only us, and the donors that can change things, and look harder before we spend our charity pound. As always these are my views and experiences, please feel free to share yours be
I have the same experience in some of these areas as you Chris and feel so frustrated by the way things are. I have some months ago stopped giveing to cancer research or other charities. I would rather give my time and a small amount of money to individuals. I feel your frustration and of many more. I have been clear of cancer for over 5 years and have noticed a great change here in North Wales and afraid not for the better. Thank you Chris as always for your posts always of interest.Georginexx
Hi Georgine. If I felt this situation was just a ‘one off’ I wouldn’t even be talking about it. Both individuals like myself doing work in the cancer sector, and even healthcare professionals are being ignored by these giants. They are trying to promote their brand at the cost of blocking choices for patients. My work at simPal is being blocked by these giants deliberately. As you mention I see it all over the country now, and know from the people we can support how poor their service really is. Why don’t they want to share? I know how difficult things are in Wales too.
It’s always lovely to hear from you, and my best to you and yours X
Hear hear. Most of the care given to my husband was by me and his family and friends. As for the beginning of our journey, we found very little information on his particular cancer. I did use the Internet more than ever, thank goodness for bogs and sites like yours otherwise we would have never had the wonderful help with Simpal and be able to keep in touch and not have to worry about phone bills.
Please keep up the remarkable work you do. Sue x
Thank you Sue! I am quite frankly disgusted the way these organisations have such little care for the patients they speak to. Even I am a patient and all they want to do is block my work! Helping people like you guys is our motivation, but it is frustrating as they could help us reach so many more. What sort of attitude is that from cancer charities?
I am just one of so many people now working together to ensure this behaviour is brought out into the open.
We appreciate your support too, and so delighted we are able to help! Chris
I’ve said to you before, Chris, that I no longer give to CRUK or Macmillan of my own accord and haven’t done for some time. Yet so many friends and colleagues still believe they’re doing the right thing when they train for hours to run marathons, etc, to fundraise in support of them. It’s a dilemma when they think I’ll donate because I’ve had cancer but I no longer believe in the charities they’re supporting! The whole cancer sector needs a good shake-up. Deb xx
Hi Deb. Things are slowly changing in the cancer charity world I can tell you. It was great to see the two bowel cancer charities merge, and I am delighted to hear that at long last two of the larger breast cancer charities are also going to. There is also starting to be a shift in donations. The big boys have hung their hats on corporate partners at the cost of the regular guys, and people can now start to see that! As this happens they will become isolated from the cancer reality. I can’t believe the behaviour I see from organisations that are trusted with money to help people. I hear from people daily about how poorly they have been dealt with.
You’re right about the shake-up and it is coming quicker than they think!
Big love Deb, Chris
Love this Chris, it needs to be said and out there.
Thanks so much Karen. I was always aware of these issues but since starting simPal I am appalled at the stories I hear from people in real poverty. How those organisations treat them. They refuse to share our work and others when I have proof their own services are letting people down daily. I will continue to prod this bear until we get change. After all it is not their cash!! The public are trusting these people 🙁
Keep posting and posting and I will share and share and share, I with many others at Living tree in Bridport who you kindly came to visit share this info with others and we are lucky but so many I meet across the country don’t know and those not part of a support group have no idea. If there is anything I can do to help just pm me as have lots of experience making change and making a voice heard.
Macmillan are very closed I have had first hand experience of this which is dangerous as many people will follow their word to the T but on the bright side they are the first port of call and do some great work for those with Cancer. But yes the charity behind it all I do question how they work as have worked with them in the past. We won’t go there let’s just look forward to getting heard and creating more momentum and trust giving people informed choices and options, a more productive way of working that will get know and listened to but hey do you really need them to spread the word? Have fun.
Thanks so much for your support Karen. Coming down to the group was a defining moment for me with my work. It changed a lot of things and meeting all you wonderful people was incredible! No I don’t NEED them to spread word of my work, but they have a lot of people asking them for like I give and they don’t tell them because we are ‘off-brand.’ That is not right in this world of lessening resource. Hope to speak soon, Chris
Excellent article Chris. Some great points raised too. As you in know I am personally affected by the circus that the NHS have put on for me regarding not funding my Proton Therapy. All the best. Ben.
Thanks so much Ben. Yes your own case finished off my week, where all I heard was complaints about how these organisations were dealing with their customers. I have a unique view too with running my own charity, so I know the reality of what is going on. Not like the glossy ads you see on tv asking for donations! Cheers pal, Chris
Thanks for signposting me to your blog Chris – bang on and agreed wholeheartedly with what you have written. It is frustrating on so many levels – aren’t we not all supposed to be helping the same people – those with cancer to get well and get supported. You are right there are so many great things being offered – often by smaller charities but the big’uns are just not interested in helping support by sharing what’s out there. Together us smaller lot should get together to have a bigger voice.
Hi Sue,
I’m glad you found the blog! Yes it is such a common theme these days. Everywhere I go these days there are large rumbles of discontent with these organisations but very few want to talk openly and the media and politicians will not get involved of course. My only agenda is to do what is best for people affected by cancer, and the current non transparent system is far from that!
Welcome aboard Sue, Chris