I was listening recently to the head of UK Building Control, discussing the red tape and complexities that had been allowed to develop over the years. This has produced the current system we seem to have, where nobody is sure of who is responsible for what! Regulations originally put there for safety, but now so difficult to unravel that people can hide behind them. Also creating so many cracks that many people slip through the system. This has all come about because of the terrible tragedy at Grenfell Tower. Listening to this guy speak about it reminded me more and more of what has been created in the world of cancer support.
An N.H.S which is struggling to cope with the new challenges that cancer survivorship is bringing, and not really clear where their responsibilities lie. National charities working with their own agendas and rules, all trying to get involved, with currently the most common aim of raising the profile of their brand, thus increasing their donations. Politicians swaying in the wind, being lobbied by the most influential charities. Always the same charities talking to the same organisations. Is it really any wonder that we fail to come up with the most basic solutions, in a sector where everyone has their own rules? So many gaps that no organisation actually covers, leaving plenty of ‘shadows’ for them to hide behind.
Recently I was a guest speaker at a patient conference, where people had come to share their experience. There were about 75% patients/carers, plus clinicians and health care professionals to share their work too. 
One presentation featured work from one of our ‘leading charities,’ where the model of care was introduced, no patient had heard of it, but worst of all this process was started in 2013! The organisation features in many conferences I am involved with, and seems to be the only voice ever shared by anyone quoting anything from cancer work. They are far from the only cancer charity in this country, but it seems they completely dominate the sector, making it now very stale. All presentations have the same look and feel, with little time given to anything that falls outside of the brand.
We have a monopoly situation within the cancer charity world, which is creating a financial problem for many organisations doing good work, but without the brand impact. This is holding back new ideas and ways of working. Any partnerships that may be talked about become takeovers, with little thought of sustainability for the smaller charities. The big boys are good at certain things, but because they dominate the sector, does not mean they are good at EVERYTHING. Seeing how well everyone in that room worked together without being organised by large healthcare, made me question the relevance of some, with todays #innovative ways of working.
The unique issues of cancer survivorship, have not really been planned for, and new ways of working are occurring all the time. We can see this daily with politics around the world. Large, very ‘clunky’ organisations struggling to make quick effective decisions. Long gone are the ‘five year plans.’ Of course we need a direction of travel, but cannot be as rigid as maybe we have been in the past. New problems need new answers, and in the case of cancer we do not have time on our side. Corporate organisations of course have their place, and we all love our N.H.S, but unless there is a much more open way of working, they will not be able to effectively help with cancer survivorship. There is much better grass roots knowledge of what is happening OUTSIDE of the big players in the sector. Much of what people living with cancer require already exists! But their voice is being deliberately strangled by the ‘egos’ that are large cancer charities, for the sake of money!
More and more expert patients are frustrated with the current situation and have taken to collaborating with other like minds, to refresh the very stale sector. 
Big does not always mean best, and I am seeing that these organisations can react quickly to the ever changing landscape. Leaving the large charities with the money and influence but not doing what is really required, still dictating to us with their outdated views. It is time for all of us to look at what we are good at and signpost effectively where we are not. Because you have the biggest coverage and income in the UK does not make you an expert! It is time for more humility I believe. Many of us have far more experience than most working in these organisations, and I believe you should be reaching out to us not pushing us away.
The Internet is the greatest equaliser there is. There is no longer an exclusivity of knowledge and information. People are beginning to ask what many healthcare organisations actually do, and are starting to question more where they personally donate their money. I now have requests to talk about these issues around the world, because people are waking up to the fact that those they trust to help them, have lost the focus of what they are there to do. It really is shocking in this day and age that resources that are there to help people, are deliberately hidden by people supposed to be improving cancer support!
Of course the above are my personal views and experiences formed over many years as a patient and ‘expert patient.’ My frustration is peaking, and it would be great if you would like to share your own views below.
Another great blog Chris. The larger cancer charities have the monopoly, with the ability to tap into the emotional aspect of people donating to “help find a cure” etc but they seem unable to see that not all cancer patients are the same and many require different types of help and support at different times. One size does not fit all. They are very good at talking the talk but don’t always follow through and walk the walk.
I know of many patients who feel very let down by some of the big charities who did not deliver on their promise of being there for patients all the way! Many of the smaller patient led organisations are so much better at focussing on the patients needs because we know what it’s like to live with cancer. Also our priority is being there for others and supporting them, not raising money or working to keep a brand image in the forefront.
As you say, the internet has made it so much easier for people to find support that suits them, when they need it. A few clicks and you can be chatting to someone at 2am in the morning who also can’t sleep because of scanxiety or whatever!!
The big charities need to wake up to the fact that they are not doing the job they say they do – patient care should always be at the forefront of everything they do and sadly at times, it is not.
Hope you are enjoying the summer. 🙂
As you know Kaz, I agree with everything you say. The more conferences I attend, the more angry I get when the same old ideas and Powerpoint slides are presented. Very lazy and stale, with little imagination. The demand for cancer support has increased dramatically and so has what is required. The big organisations just don’t really understand the pace of change, or deliver any innovative ideas.
But instead of admitting that, they continue on the same path. Ignoring good ideas brought to them by experienced patients, thus making it more difficult for people to find what they are looking for. Purely about fundraising in most cases as we know!
Only when the public wake up to where their money is going will the charities change. Very best as always, Chris
Hi Chris, I agree with Kaz, but also I’m seeing some established charities changing focus and giving more priority to certain cancers. I feel this is now happening with womb cancer, for example, presumably because the charities in question see patients providing support and services they’d so far failed to provide and they’re no doubt concerned they’ll be losing donations / funding if they don’t get their act together. Is that too cynical of me?!
While in theory it’s good news for womb cancer patients if help is genuinely available (or becoming available) from established charities, I believe the lack of support and visibility remains with other cancers. Take pancreatic cancer for example where little, if anything, has changed in terms of survival for those patients in what – 40 years maybe? That’s surely a desolate position to be in and, even with well established charities for those cancers, their voice isn’t necessarily being heard.
The increases in cancer cases and the numbers now surviving, etc, weren’t accounted for in the original NHS model. Plus the NHS is now expected to cover the cost of more and more issues and I’m not just talking cancer.
Organisations need to evolve and grow to keep up with constantly changing demands and this isn’t necessarily going to happen with large charities that have a monopoly and also are doing very nicely as they are. If they’re comfortable they don’t what to loosen the stranglehold. While that continues to be the case, patients will continue to support each other because what other choice is there?
I think I’ve said before that more and more online patient support groups are available now for womb cancer but the support systems are still not ‘joined up’, with collaboration and co-operation from the cancer sector still lacking. Despite that, patients and former patients keep plugging away. All well and good where survival rates make that possible.
Thanks for another on point blog! Deb xx
Hi Deb,
No that is not too cynical of you! I have noticed the same thing too. I have been told that they realise they are not engaging online with the ‘key players’ but can’t lose the corporate style which makes people not want to engage.
Of course the major difference is that we come with our heart and not for a salary. It is now very obvious where this is happening, and people are not stupid. I will only attend certain conferences now, where I know there is no attempt to brainwash me to death with kep policy slides and smiley faces.
The Internet has opened up so many possibilities which are just not being used, and the big boys are strangling us by dominating the fundraising with their highly paid staff. Also totally ignoring any innovative ideas and refusing to share.
If the public really knew what was happening with their cash there would be an uproar. Thanks for all you and your ladies do Deb! We know the difference we are making xxx
I too share the cynicism. It is hard not to be cynical about the sudden interest in womb cancer from certain charities when you consider that it is the most common gynaecological cancer with around 26 women every day being diagnosed. Why all the sudden interest? They still don’t seem that concerned about supporting women who have been diagnosed but its all about raising money and their own profile. There is still a lack of joined up working between awareness, support and research.
It is all very well looking for a cure – people have been looking for that for decades, but what about helping those who have been diagnosed? There doesn’t seem to be much of a rush to do that. And when support is offered by the big charities it is very much a “one size fits all” and doesn’t take into account the many and varied issues that cancer patients face – from running up debt because of having to give up work to infertility issues, marriage breakdown, long term side effects and so much more.
Those of us that have been through a cancer diagnosis and come out the other side know where the gaps are and some of us try our best to fill them. We should be encouraged and supported by the big charities not ignored and dismissed because we are stepping on their toes.
The internet has opened up a whole new support network for cancer patients but some of the big charities are slow to adapt and this can leave some cancer patients not getting the support they need when they need it.
In an ideal world, every cancer patient would get all the support they need but this is never going to happen so those of us that can, will continue to do what we do because we know what it feels like to not have that support.
We do what we do because we can and we are making a difference.
I can’t see large charities voluntarily budging over to make room for smaller charities, patient support groups and the like. No matter how they might try to dress up what they do, I think they’re basically large businesses chasing money, therefore, pounds speak louder than patients when it comes to gaining their attention. As you say, Kaz, those of us who’ve had any form of cancer understand patient needs and so provide what help we can to plug gaps because we’re able to make a difference that way. And Chris, your way of working is so opposite from that of large, established charities and, therefore, so admirable to me – and I believe to Kaz and many others – for precisely that reason!
I couldn’t agree more Deb! Thank you for your kind words re simPal. Through my work and experience of the behemoth charities I knew what we didn’t want to do. Time and respect are so important and those are our priorities. We have a small team and know the people we are dealing with both in healthcare and patients. We understand the pressure that a cancer diagnosis brings too.
We are in it because we want to be, not to earn a living, if only! But we are constantly full with people waiting for our help. We spend almost nothing on marketing because word of our work has spread quickly. We want to set an example to the big boys, but can only go as fast as the money comes in 🙂 Appreciate the support as always Deb xxx
Actually Kaz, after our discussion this week, we seem to have been joined by many more people who want to share their experiences too. All very much the same of course. The big boys, particularly the ‘Green Machine,’ have little time for anything/anyone outside of their own organisation. Thus ways of working do not reflect what is required by people affected by cancer. They are just not listening.
We know it is all about money, but why do the N.H.S lean on them so much, without question? The entire area has become bloated and wasteful, comfortable with their position. As you say there are now very few charities involved in cancer support, because obviously it is expensive and time consuming. All of us needing a much more personalised approach than the corporates can offer. But blindly continuing on this road will get us nowhere.
I believe this is a scandal as all people donating, trust the organisations and would be shocked to see the waste that we see, in the name of branding. It feels we have the support we need with even heads of smaller charities seeing what is happening. You will see more about this in the coming weeks, as I am having conversations with many insiders 🙂 Tu Kaz! xxx
Sadly, I think the mantra is an individual one and it has to be “take charge”. It’s incredibly difficult, isolating and sometimes disheartening, but given the current system, it’s up to the individual to see to their care on a physical, psychological and spiritual level. Here in the States there are some stand out organizations. Cancer Pathways is Seattle is, in my mind, the model for how to do it right. But they’re in Seattle, and if you’re not, you’re out of luck.
The internet is changing things. If nothing else, we can all realize that we share a lot of commonalities in our experiences. We are not alone in our sense of isolation or confusion about what to do. Social media and the camaraderie it offers may transcend the traditional role of some charitable organizations and actually provide the type of information, education and understanding support that is meaningful. Perhaps a new model lies in technology not monopolies.
Cancer is a life changing event. May it change each of us for the better and may we share our insights along the way.
Hi Pat,
Like you, I am very much a pro-active patient, always pushing for improved care and support, but unfortunately there are still so many that are not. The system should also provide for these people too, maybe the most vulnerable in society. We too have good examples of how support should be given but unfortunately also very sporadic and a matter of luck if you are in the right area.
Social media is certainly changing things quickly, and the larger traditional charities are struggling to keep up, however currently still dominate the money pool!
I hope you are enjoying your trip Pat!!
A sad state of affairs that you come back to Chris having spoken about it before. I feel your frustration. It is shocking that the large charities dominate so much and I am always suspicious of how much of the money raised by cancer survivors for charities actually goes directly to patients and improving services. Great that you keep writing about it. I am in awe of you
Hi Dawn, so lovely to hear from you. I know you are around less on social and I can’t blame you for that! Hope all good with you both. Yes the issues are getting worse, we had so many people wanting to share their own experiences. Noirin and I will be doing a big tweetchat in September, and I will invite the big charities to come and join us. Big love to you xxx
The extent of ‘support’ when my cancer journey started 32 years ago was limited at best. Unsolicited of wisdom such as ‘It’s all in your mind’ & ‘You’re not fighting hard enough’ were more toxic than #chemo & #rt #GladIFlewSolo
I remember those days too Kathleen, with my Mum. Things are improving slowly, as local community work becomes increasingly important. But so much more to be done. I also prefer to #flysolo 🙂