During the last few weeks it has been incredibly busy with a rush to finalise some plans and partnerships for 2019. Both for simPal and my personal work things are accelerating, with many projects being discussed for the coming year. Social-media of course needs constant updating so my mind is staying continually active. My own campaigning has been in the public eye for more than seven years and there are times when I wonder if I have reached my ‘sell-by date!’ I am aware that our needs are changing rapidly, but I am moving very quickly into the tech areas, which is helping share my cancer work with people who up to now were not aware of it. Fresh ways of communication and exciting new doors opening because of it.
Having recently done some high profile conferences, I have a steady stream of people looking to use my platforms to share their campaigns. This has now become a constant theme! Charities, healthcare, and private corporations are looking to improve their exposure in the right areas, despite the fact that they all have entire digital departments to run their own!! We are all now able to determine a genuine campaign from the continual feed of brain washing adverts. Often I feel hypnotised by the constant stream of ‘gentle persuasion’ coming down our phones and television screens. I am already sick of Black Friday and Christmas!! It is not about the quantity of advertising you can pump out, but more about true engagement with your audience.
My story is authentic, and I have passion for helping people because of my own experiences with cancer. I am meeting incredible people weekly, and have no interest in monetising the website and social media. My international speaking has increased demand for my services, because my only agenda is to help people affected by cancer. After many years of building this reputation my name is known globally, and has become a ‘trusted brand.’ Something that cannot be purchased by any amount of money. People listen to me and share my work around the world. I am the most influential cancer patient in this country.
To have some form of influence in the cancer sector, is what I wanted to achieve when I started my work so long ago. I wanted to have a real say from the patient perspective, and influence simple changes that can make massive impact in peoples lives. I am finally in that position, and it was whilst having a conversation with my Consultant it sunk in! We are often discussing changes that should be made, and I was talking about the dreadfully slow computer system being used in my hospital to arrange blood tests. I jokingly said that the software was obviously not designed by someone who had to use it, he laughed and nodded. I asked him why nobody complained and said, “you have more influence than us Mr Lewis!”
And actually he is right. I am totally independent and can make criticisms where and when necessary. I am known at CEO level by all cancer charities and most hospitals. Unfortunately these large organisations take little notice of their employees but do listen to people from outside. I now feel freshly energised as I can see the influence of patients beginning to grow, and smaller charities being recognised, as the importance of community work grows. Partnership and collaboration will be the buzz words in 2019. If you feel that you are lone voice pushing against the tide, you aren’t. There are many of us out there wanting to see change from the current cosy arrangements, with a failing cancer system propped up by the two largest cancer charities in this country, continuing to pay lip service to politicians who are on the merry-go-round of jobs.
The Internet has made things much more equal on the publicity front! What we have to do is believe. Unfortunately there are millions of us out there affected by poor support after our diagnosis, and this is just not good enough. We are still being discriminated against at every turn, as we are a soft and easy target. Personally I will not be sitting back in 2019, and will be sharing these continuing injustices far and wide. It is time that these guys got their house in order and worked for the benefit of us, and not for self gratification. My belief is that change will only happen from the bottom, as politicians continue to scrap amongst themselves, and the years pass by. As we all are aware, this disease will not wait for the bickering to end.
Cancer is something that should unite us, but like all things these days, we are side tracked by ‘red herring’ issues and become divided. Very convenient for the cancer policy makers. Let us focus on working together for what we believe in. If any of this piece is ringing any bells for you please feel free to connect up on social-media and get in touch. We do have a voice so let’s use it!
As always these are my own views and experiences, please feel free to come and join the discussion below.
I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions.