"Having worked for myself nearly all my life, I had been used to things happening in a timely manner. In my world, time literally was money, and I was paid by result, so it was important to learn how to get people to work in the same way. Of course life always threw obstacles at you but it became second nature to find ways round the problem.
Then I got seriously sick, and thought that my healthcare would work in the same way, but boy, what a lesson I had! To be fair I had no experience of serious illness or the inside of a hospital, but I really thought that I would go through a process in a certain period of time, and then pick up my life again.
How wrong could I be? Of course healthcare is nothing like that; each case is unique and doesn’t necessarily have any connection to previous ones. We all react differently to treatment, so ultimately the doctors cannot really say what will happen and when.
Very quickly I learned that I was no longer in control of my life, and had to get used to being the passenger rather than the driver. So many drugs, treatment and appointments, my life was being run by the instructions I received from my medical team.
Spending time waiting for treatment and appointments was like learning to live a new life. My calendar was now full of hospital visits and not business or social engagements. Worst of all for me was the fact I had to rely on so many others for help. My wife, family and friends had to ferry me backwards and forwards and wait whilst I had a lot of tiring treatment. It became so frustrating for me.
But there was no option and I knew that I had to accept that or forever torture myself with frustration. I came to realise that I should be grateful for what I had, as I was still alive despite all the odds.
After some time, I felt the need to improve things for people affected by cancer and started public speaking, and running my own website etc. I felt this might be my chance to return to a business type arena. But again my hopes were dashed.
I came to the cancer support sector, thinking that being the time limiting illness that it is, things would happen with appropriate timing. Again I was wrong, and quickly my frustrations were coming to the fore again. Basic lack of communication skills is something I encounter so frequently now. Phone and email responses are at best sporadic; sometimes it can take weeks to get a reply. Leave messages and it is 50/50 if the call is returned.
Over the years I have been doing this work I have also learned to be persistent! Although I know that communication is generally poor in this sector, I cannot accept it in this day and age, with so many mediums available.
The red tape I encounter is incredible and makes things difficult to do even if there is a will. My wife always laughs when my frustrations come out, and she says” why are you still surprised?”
I have some really wonderful people I work with, and everyone has the same issues. The incredible thing is that there are people like us, not being paid for what we do, offering goods and services to improve the lives of people affected by cancer, at no/little cost, but still the large organisations will not let us in?
It feels like cancer support is being run like a cartel. The large organisations taking the lion’s share of the money and publicity, and allowing the more local good causes to slowly wither and die.
Is this acting in the interest of people affected by cancer? Free/low cost services existing but people not knowing about them, because of a lack of interest in promoting anything outside their own organisations.
This week I spoke with a very senior member of staff in a large hospital, who asked me about my new charity. He said it was a brilliant idea but don’t bother taking it to their charity, as it will only get lost in red tape. Sad but true!
I really do have patience now as I understand totally what is happening. Thankfully the Internet will help us reach the people we need to, and we no longer need to be stuck in a log jam in someone’s inbox. Yes it will undoubtedly take us longer but I have accepted that. Patience is very certainly a virtue in my life now."
Thank you so much to Chris for taking the time to write this piece for us. If you would be interested in writing a guest piece for the blog then get in touch via the contact form.
xx Kaz xx