Until I got sick back in 2007 I had very little idea of the devastation that cancer can bring to a life. Of course I had read the stories, and even my own Mother and Father had been touched by cancer, but it wasn’t until my own experience that I could fully understand the impact it can have. Since I have chosen to take the ‘cancer path’ to work on now for the rest of my life, I am understanding and learning so much more from listening to others and how they have been affected. But my naivety has certainly been removed over the years, as I deal with more and more organisations, trying to wade through the red tape and systems that seem to be used by many as reasons for lack of improvement in the sector.
Before I continue I obviously need to declare my interest, as many of you may know I have now started my own charity. This was not something I really wanted to do, as I always believed that there were too many around anyway, which naturally presents a ‘sustainability issue’ for most. With the larger ones dominating through their marketing channels and receiving the lions share of available money, meaning the big get bigger and most smaller ones eventually fall by the wayside. But as the years have gone on I am still seeing the same issues with larger organisations, being obstacles to their effectiveness. Lack of two way communication and not clearly engaging with their audience being two key ones. I describe many as suffering with ‘Dinosaur Syndrome’ the brain wants the tail to wag but that only happens after such a long time.
Recently I have purchased some innovative equipment using my own charity fund at hospital. Money I have raised and choose with the hospital where it is spent, I am still waiting after 6 weeks for a cheque to be raised! Paperwork, administration, annual leave, unanswered emails and the list goes on but ultimately things don’t get done in a timely fashion. This would not be accepted in the business world but why is this way of working broadly accepted as ‘the way it is?’ The deeper I get involved in healthcare the more examples of this I see. Cancer is something that waits for none of us as it continues it’s relentless march through the human race. So I still fail to see why there appears to be no lack of urgency with much of the work that goes on behind the scenes.
Watching the news in recent years seeing the way our incredible N.H.S is being dragged into the political arena as each party blames the other for its failure to keep up with modern day needs is so frustrating. But I also see at first hand why there need to be changes made. The dreadful waste of resources and shocking management which I have seen up close and personal, are just small examples of what seems like an epidemic of wasted finance and extremely slow methods of dealing with that.
I want to show that support can be given to the people who need it in a timely manner, with great collaborations and a ‘win’ for everyone. Already after one week we have some very generous donations from people who understand what we are doing and our first partner who is delighted that they can also help more people. Admittedly this principle is a simple one, which I have planned deliberately so that it can be scaled easily. I can’t say it is perfect but we are willing to watch and learn as we grow to ensure that things still continue to happen in a timely fashion.
In all my years as a patient I have only ever been treated by wonderful caring people and that continues today, but I can’t help but think that if all the peripheral services were organised as well as our acute care, the cancer world would be a far better place. Many people that work in the charity sector have little idea of what life is like living with cancer, and little is done to improve that via education and experience giving. Naturally there are exceptions to that of course, but many spend their working life moving between charities to work their way up the career ladder. Most of these organisations have become businesses in their own right with massive budgets for advertising and marketing. But to whom are they accountable?
In the days of wonderful technology how is it that we are still really unable to know where our local support services are? Why is it still hit or miss whether we can find the help we need? There is some very closed thinking going on and a reluctance to share resource and information. Brand ego is impacting on the services that people affected by cancer need to locate quickly. In many cases those services exist but people just do not know how to find them. I have never wanted to reinvent the wheel and there are many wheels in the cancer sector, all different colours,but wheels just the same! However I feel that I can offer a fresh view of things. My only agenda is to help those affected by cancer in the best way that I can in a timely manner. Thanks to some incredible support we are now well and truly running, how far we can go I don’t know but we will give it a good go and who knows maybe some of our ways of working may become ‘best practice’ in years to come!
Above are my thoughts and experiences, please feel free to share yours below.