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.