Back in 2008, I realised that I was going to donate whatever time I had left, to help improve life for people living with cancer. There was so much wrong with the ‘system,’ and I knew I had skills that would benefit the organisations involved. Why would I start my own if there were plenty already there? I really didn’t want to reinvent the wheel. But it became quickly obvious why I would have to. Those with the most influence were/are incredibly ‘clunky.’ Top heavy with management, and nobody actually taking decisions in a timely fashion.
This was totally different to my own working experience! Firstly, the delays were truly costing lives. I could see no organisation looking to innovate new ways of working either. Above the charity sector was the Government. They were/are happy to continue paying token attention to the subject of cancer. Leaving a stale senior management team in charge, despite continuing failure over many years. This team being particularly ‘cosy’ with Macmillan Cancer Support, Cancer Research and Breast Cancer Now, amongst others. Is it any wonder why we experience no progress?
So as you can see, working in that system would never achieve the change we need to see, certainly not quick enough to slow the needless loss of life that continues daily. Even working on my own for over 12 years I have at least achieved a voice, all be it a small one, for patients. The Internet has helped us achieve what we have not done before. Although, for some strange reason we are seen as competition by many charities, and obstacles to overcome by NHS leaders. This is never about ‘us and them,’ we are ALL affected by cancer. Nor do we want to break the current system. We just want to be part of it, and use our valuable experience to improve it. Why are there so many barriers put up to stop that?
As many of you know I also run my charity SimPal. We are the only organisation in the WORLD, giving phones and prepaid sims to people financially disadvantaged by cancer. This has been going for nearly 4 years, when we could see the importance of digital inclusion for all. The cancer charity giants choose not to share news of our work, and the NHS is far too complex to even talk to, so we don’t.
But we are known by nurses in every hospital in the UK, who we are able to help in different ways. Unlike many professionals, I don’t earn any money by attending meetings, so I choose very carefully how I use my time. It has to be productive for me. As Covid19 took a grip on the country everybody saw the impact for people without good digital connections. Physically with broadband, or through lack of devices.
Naturally questions were asked of the Government why this problem existed, and they set up their own task force. Yes I know! Given the fact that we have been doing that work for so long and were used to dealing with vulnerable people, I volunteered our help. They invited me to join their coalition, which I did. We had our first ‘Zoomathon,’ recently which consisted of 3 Powerpoint presentations from large corporate organisations. Wow, I’m just wondering how people get paid so much to disengage their audience? I had to privately introduce myself to the group via chat, as there was no time to tell other members what we do. Many people contacted me afterwards. What was achieved in that hour, I have no idea!
Our work is already miles in front of this! We are supplying people across the country, with our infrastructure already in place! They are running a public fundraising campaign to buy devices. Is this really all we can offer when we have such a need in this country? So crucial for EVERYBODY to be connected in times like this. How can we pretend that we really want to solve a problem when this is our best shot at it? Still I suppose it could be worse, Dido Harding could be in charge!!
I have seen the total lack of organisation and impact from the Government. Refusing to use existing knowledge and leaving the big decisions to people who have no experience in the roles they are doing. Many only there because they have friends in power. Chaos at every turn, which is why I cannot give any of my time to anything that puts me into this system. It is broken, and I am finding it better to create my own. This may not be considered the best thing to do by many, but it is how I work best.
I have no interest in changing mind sets and company structures. My work is about making positive change for people affected by cancer as quick as I possibly can. There are many ways of doing it. But if the system continues to put up barriers to innovative working, I will continue to stay outside of it.
As always these are my personal views and experiences. Please feel free to add your own below.