My working life has changed dramatically since the start of 2019, and it is all incredibly positive! SimPal is now serving families across the entire UK and we are working with some incredible partners, which is making life a lot easier. As things in the charity world continue to evolve, we are being contacted by national companies who are disillusioned by giant charities, and can see the impact we are having in the community. Being small we are restricted what we can take on due to limited finance, but we are open and honest with people. Our work is innovative and we are very agile, due to the way we work in a fast moving sector. The projects I do personally are getting more high profile, and I am working with some of the largest names in cancer today. Attempting to improve the communication between clinicians and patients, removing politics and making time of the essence!
I have been involved with the cancer sector for approximately ten years now, and I have become totally bored with most things I see and hear in the UK. We have moved on from booklets to flashy internet communication which is a lot more user-friendly and convenient. The information is up to date and appropriate, and we have created groups on social-media where like minds can discuss and share as much as they like. But what of substance has actually improved in that time?
Recently I have attended meetings from local to national level, and still the issues discussed remain the same as ten years ago. The inequality of life for people affected by cancer. How poorer people have become once they get cancer. The lack of job opportunities for people affected by cancer. Hospital parking charges, not enough money given to certain cancers, the lack of progress in specific tumour types and staffing numbers decreasing. The same questions coming up time after time, year after year. Just this week there was a meeting of minds from Macmillan Cancer Support and Cancer Research to talk about many of these issues, and they were proud when they talked about COLLABORATION, wow! These two organisations can’t stop massaging their egos over what incredible work they do. Everywhere you looked were adverts about them, and of course the obligatory ‘patient story’ to make everyone feel better about what they do!
This is not a collaboration but a cartel, which was also attended by ex-employees now plying their trade in the NHS! These are the organisations that are supposedly there for us when we need them most. But what are they doing? We know they are successful in the advertising world, where you certainly have to be wealthy to exist. Most people know their brands of course, but I suggest not for anything they have done for them? More about being drip fed by constant advertising on tv, social media, and public transport etc. It is obviously working as they are financially the two largest cancer charities in this country. What impact are they having in the cancer community? Their opinions are the first we ever hear when cancer makes the news. It is as if what we are seeing is not official unless they have had their comments. Cancer research and cancer support are two of the broadest terms used in the sector. So who can argue with them? Trying to get specific answers though, is like asking questions to MI5.
With our country in such a political mess, we are seeing absolutely no action at all in healthcare, but who is challenging the Government? I see a lot of money in their accounts for ‘lobbying and campaigns’ but what is the result? Everyone concerned seems very happy with the status-quo, all drawing healthy salaries, being rewarded well for failure. The same names and faces travelling on the cancer roundabout. Some of the worst communicators I have ever met. No private business would be run like this, with a ‘jobs for the boys’ approach.
Meanwhile cancer continues to take lives on a daily basis, as the number of people affected increases. My belief is that it is the ‘modern day plague.’ Everyone is affected so why is there such a lack of urgency? The system is totally broken, if there was one in the first place. Silo working is as apparent now as it was when I started my work. Everyone is only interested in their own empire with no one responsible for looking at the bigger picture. Unfortunately the facts are very stark, that we cannot rely on the people who tell us they are there to help us. Nothing will change unless we make it happen. Of course it is difficult enough to cope with the disease, let alone fight for what we need, but this is the state of affairs we find ourselves in. Things will not change within this current system.
This issue is not only about money it is about desire to make change happen, and I don’t see that from any leadership in the cancer sector. It is stale and washed up, and certainly doesn’t reflect the people it is there to represent. This is becoming a national disgrace!
As always these are my own opinions based on my own experiences. Please feel free to share your own below.
You’ve hit the nail on the head, Chris. X
Thanks Deb! It seems like it as the comments are building. I know you are busy and I hope all positive XXX
I’m doing OK thanks Chris. Still dealing with bits and pieces following Mum’s death. Both my parents lost to cancer within four years of each other, both diagnosed too late. Your headline here couldn’t be more true. I’m so cynical about these slick TV ads aimed at encouraging donations to large cancer charities because the money ‘will help find a cure’. And critical care staff are angry about the way newer treatments such as Immunotherapy are pitched to patients who, seemingly, frequently end up on their ward like Mum did. I suspected she was a guinea pig; we were told only a very small number of patients have survived any real length of time on Immunotherapy for the cancer she had. All a bit raw for me at the moment. There’s a definite lack of support for smaller charities in terms of where the public donate their time and money. While the larger charities watch the smaller ones and rehash their campaign ideas to make themselves millions. XXX
Fantastic blog Chris! I gave a talk about enjoying sexual intimacy and pleasure at Ovacome wellbeing day yesterday. What incredible women and an amazing charity, such an honour to be invited to work with them. However several times Macmillan was mentioned about their lack of support and practical advice. One woman is a palliative care nurse in a hospice working with people with terminal cancer to improve QOL, not just EOL. She is a former Macmillan nurse but said there were many restrictions to what they could offer, share or commercial organisations they could recommend. If it wasn’t Macmillan they couldn’t share it which is why she left. She said the hospice work with so many charities, commercial companies which means she can offer the best care available beyond the NHS budgets and Macmillan constraints. I work with several Macmillan nurses and one nurse is giving a talk at a Macmillan sponsored conference who will be sharing our health brochures and showing products yet Macmillan will not work with me. I keep telling them their sex advice info in their literature is outdated but always get a genetic reply, we’ll update it, this has been ongoing for last 2yrs! I give up with them. I love working with small cancer charities because you know your members and what they need. Sadly the big brands will continue to get the money but we’ll keep raising awareness and promoting all the fabulous small charities making much bigger impact to care support and QOL. Huge thank to you x
Thanks as always Sam, and I’m glad the Ovacome conference was good for you. They are indeed an incredible charity, one of many ‘smaller charities’ doing incredible work in this sector. I know personally about the way Macmillan operate and have been told they are not interested in sharing details of simPal work despite many Macmillan nurses in the centres using it! I was told by CEO if I wanted to complain I should go through the website 🙂 Ha!!!! She wasn’t even interested in our users that complain about how they have been dealt with by them.
I see a massive split between their professionals and the organisation itself, their name provokes laughter whenever it is mentioned around me. Your own situation is mirrored by many Sam including myself, which is a disgrace to the many people dying of cancer in this country.
They cannot continue working in this way, and I will do my best to show the public what is really happening and thanks so much for all you do out there Sam. Don’t worry about those guys, they are no longer relevant as things change so quickly! Keep doing what you do best XXXX
Chris this is a brilliant article and I agree with you 100%. Not everyone will agree, some are quite happy and will continue to support cancer research for example, but like Nigel farage has done to the U.K. by exposing the greed and corruption of the EU and thus creating the most controversial but powerful move for political change we will know in our lifetimes, the same must happen for exposing the control, corruption and greed of big cancer charities, because it is killing us!
Thanks so much Daniel. I don’t write pieces that everyone will agree with, just what I see and experience. Of course there are 2 sides to every story, but these two charities are not transparent about what they do, and refuse to get involved with patients and smaller charities who have much more expertise in the area. They refuse point blank to work with me and YoursimPal and pointed me to their website if I wanted to complain. That came from CEO 🙂 They are both just marketing machines who want to see their own names as many times as possible. If only the public were fully aware of where their money goes! These giant charities are standing on very shaky ground now.
Well said, Chris. I was just thinking of all those hundreds of fellow patients I created and maintain patient support forums for and how the silent patient and family majority is absolutely inactive as if they are entitled to get my work for free.
I also noticed that the trend in Europe is now of government9together with docs, clinics and pharma) organizing more and more not really empowering patient conferences that are well funded but lead to NOTHING as the information given there is often manipulated and no actions are discussed, no real patient involvement! It is just onesided information distribution. They are just appeasement attempts of government and doctors and pharma to get us to be less vocal demanding change. I think we should ignore them, even boycott those conferences as they corrupt us.Too much sort of patient bribery type conferences for patients to distract them and appease them with free excursions, free information free, accommodation, even free flights and sometimes even direct monetary subsidies per patient participating. All these conferences and seminars are is employment projects for pseudo-patient advocates who have strong ties with government so politics and have no added value. Quite different from those patient advocate like you who actually offer valuable ideas and services and do not dance to te tune of the inert appeasers.
Hi Peter, your experiences are exactly the same as mine unfortunately, and why wouldn’t they be? I have almost given up speaking in the UK as the conferences in general have very little impact. Full of people paid to go there and tick another box. Very little time for patients, just a nice sob story to remind people why they are there. Nothing can change whilst this is still the process. Large charities cosy with NHS senior staff all enjoying a free day out. What is going on involves deception of the public, so I feel sick every time I watch any dreadful advert from those charities. I will not stand by and watch this carry on! Thank you for all the
Exactly my thoughts too Chris
Thanks so much Georgine. I hope you both are doing well XX
I attended a conference @ Cancer Research @ Southampton University Hospital a few years back. When asked to give a brief bio I mentioned that I also volunteered for Macmillan. The reception was awful. I felt really uncomfortable & stopped supporting Cancer Research in any way.
I still get emails after unsubscribing.
Chris you’re doing a brilliant job.
Thanks so much for your kind words and support Christine. Unfortunately your story is all too common. So much chest thumping from these two charities you might actually forget they are there to help people. Politics and financial muscle exist very high up in the cancer world and it is up to us to speak out. People see frightened, I don’t know why? The media will not touch a story to do with those two and politicians won’t believe what goes on. Only when their income is affected will things change.
Smoke and mirrors I’m afraid Christine. All I want is them to work WITH patients and spend the money more respectfully. Not on their ego massaging. Appreciate you sharing your own experience
Chris – what you have said is music to my ears – its my daily mantra and rant all of the time. I even had a wonderful story published by the MAIL online by one of our beneficiaries who asked for the charity to be mentioned in the article and as the charity link at the end of the article – Guess what happened? Yes to Life was removed and replaced with Cancer Research UK. Such a sorry state of affairs. US smaller voices need to join together and get a bigger voice – we are the charities who struggle to stay afloat – people are brainwashed to send all their money to those two and we are actually directly helping people – not wasting our small pot! Thanks for you honest article – brilliant – we will share.
Hi Sue, thanks for your kind words and joining in the discussion. I see issues like that happening all the time including those guys using other peoples work and claiming the credit themselves. They totally want to dominate the sector and squeeze all the competition out, which is my definition of a cartel! Basically they are so corporate and have forgotten what they are there to do. Marketing, marketing and more marketing! Don’t worry Sue, I am happy to take this challenge on. Is it any wonder that the public are losing faith in the charity sector? Cheers, Chris
Right with you Chris. Great post. Thankfully, I think the public is increasingly aware of what a cosy club the world of cancer research and treatment is and that the best action for patients is coming from passionate small charities that are really looking to make a difference. Thanks for posting.
Thanks so much Robin. Cosy club sums it right up unfortunately. There is so much money to be made from this sector, that no one in charge is in a hurry. Only us patients understand the issues of time and cancer! Very best to you.
So many people wanting to have ‘meetings’ because that’s what they get paid for. Full of lip service and no action!
Indeed Francesca! I do very few meetings anymore, we are still kicking the same cans down the road as we were 10 years ago. Big love to you guys XXX
Hallelujah Chris ! My charity role is to ensure the meetings I have follow through timely and with results ! I don’t see this in the big charities ! They are not accountable anymore
Unfortunately not Caroline! They are on a charm offensive with the public, with their awful videos and will-making requests. They have no respect for the people who donate to them. Totally smoke a mirrors, with politicians bamboozled by these big money generating machines. People give to these orgs with trust that the money will be used to help people. If only they knew 🙁
Don’t suppose Macmillan or CRUK will respond to this Chris Couldn’t agree more; they have both just become great big machines.
Indeed not so far Fiona! I see so much rubbish spouted by those two, especially after talking to applicants for our YoursimPal service. Even the Mac nurses call us directly, while the charity wants to ignore us. They can try 🙂
Pretty much our experience
I don’t really care about them from a personal perspective! You, us and many others have the publicity and impact they seek. As a business they have become alienated in the past. That can’t continue for too long as their income will start dropping as people see through how they work. Their attitude stinks!
People would support smaller charities, where donations are actually spent on trying to find cures/better drugs, but as they can’t afford to advertise most people don’t even know they exist. I can’t see how things are going to change anytime soon without IMMENSE pressure.
Immense pressure is the answer Angela. The current system is not good for patients, it is a monopoly. We must speak out against it, many are still frightened to go public 🙁