My working life has changed dramatically since the start of 2019, and it is all incredibly positive! SimPal is now serving families across the entire UK and we are working with some incredible partners, which is making life a lot easier. As things in the charity world continue to evolve, we are being contacted by national companies who are disillusioned by giant charities, and can see the impact we are having in the community. Being small we are restricted what we can take on due to limited finance, but we are open and honest with people. Our work is innovative and we are very agile, due to the way we work in a fast moving sector. The projects I do personally are getting more high profile, and I am working with some of the largest names in cancer today. Attempting to improve the communication between clinicians and patients, removing politics and making time of the essence!
I have been involved with the cancer sector for approximately ten years now, and I have become totally bored with most things I see and hear in the UK. We have moved on from booklets to flashy internet communication which is a lot more user-friendly and convenient. The information is up to date and appropriate, and we have created groups on social-media where like minds can discuss and share as much as they like. But what of substance has actually improved in that time?
Recently I have attended meetings from local to national level, and still the issues discussed remain the same as ten years ago. The inequality of life for people affected by cancer. How poorer people have become once they get cancer. The lack of job opportunities for people affected by cancer. Hospital parking charges, not enough money given to certain cancers, the lack of progress in specific tumour types and staffing numbers decreasing. The same questions coming up time after time, year after year. Just this week there was a meeting of minds from Macmillan Cancer Support and Cancer Research to talk about many of these issues, and they were proud when they talked about COLLABORATION, wow! These two organisations can’t stop massaging their egos over what incredible work they do. Everywhere you looked were adverts about them, and of course the obligatory ‘patient story’ to make everyone feel better about what they do!
This is not a collaboration but a cartel, which was also attended by ex-employees now plying their trade in the NHS! These are the organisations that are supposedly there for us when we need them most. But what are they doing? We know they are successful in the advertising world, where you certainly have to be wealthy to exist. Most people know their brands of course, but I suggest not for anything they have done for them? More about being drip fed by constant advertising on tv, social media, and public transport etc. It is obviously working as they are financially the two largest cancer charities in this country. What impact are they having in the cancer community? Their opinions are the first we ever hear when cancer makes the news. It is as if what we are seeing is not official unless they have had their comments. Cancer research and cancer support are two of the broadest terms used in the sector. So who can argue with them? Trying to get specific answers though, is like asking questions to MI5.
With our country in such a political mess, we are seeing absolutely no action at all in healthcare, but who is challenging the Government? I see a lot of money in their accounts for ‘lobbying and campaigns’ but what is the result? Everyone concerned seems very happy with the status-quo, all drawing healthy salaries, being rewarded well for failure. The same names and faces travelling on the cancer roundabout. Some of the worst communicators I have ever met. No private business would be run like this, with a ‘jobs for the boys’ approach.
Meanwhile cancer continues to take lives on a daily basis, as the number of people affected increases. My belief is that it is the ‘modern day plague.’ Everyone is affected so why is there such a lack of urgency? The system is totally broken, if there was one in the first place. Silo working is as apparent now as it was when I started my work. Everyone is only interested in their own empire with no one responsible for looking at the bigger picture. Unfortunately the facts are very stark, that we cannot rely on the people who tell us they are there to help us. Nothing will change unless we make it happen. Of course it is difficult enough to cope with the disease, let alone fight for what we need, but this is the state of affairs we find ourselves in. Things will not change within this current system.
This issue is not only about money it is about desire to make change happen, and I don’t see that from any leadership in the cancer sector. It is stale and washed up, and certainly doesn’t reflect the people it is there to represent. This is becoming a national disgrace!
As always these are my own opinions based on my own experiences. Please feel free to share your own 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.