Raising Awareness Must Lead To Change!

I am writing this piece after spending a very sociable evening with the team at Leukaemia Care and Quality Health. We were there to hear the latest patient statistics around blood cancers. After a few slides in, I felt a dramatic case of deja vu! It was as if my life had stood still for eleven years. Early diagnosis, emotional and financial support were the key findings. Exactly as they were when I was going through treatment in 2007. We were also talking about educating GPs to better recognise blood cancers, which I must admit worried me. Although there are some rare ones, I believe I can personally recognise most of the main signs myself! 

‘Raising awareness’ are the words I hear most when talking about cancer. From diagnosis, treatment, survivorship, drugs, finances and discrimination in the workplace. The Internet has been an incredible resource for us patients. It has meant that we now have a voice and can campaign equally well in our own way. Newspapers and media are now full of incredible personal stories and pictures of people that have survived complex cancer treatment, and others that haven’t. Of course, even after all of this there are cancers that get little money spent on them and others that receive millions. Some charities have a large voice and others don’t. Politics swings in the wind, not knowing which way to blow, meaning the leadership in this sector remains weak and rudderless. 

Now we are aware of so many cancer related issues. A much better situation than twenty years ago, when it was referred to as the ‘Big C,’ and  seen by most as a death sentence. People are now proud to show their scars and pictures of chemotherapy and radiotherapy. It’s wonderful that we can talk so freely now. However if we have made progress there, why is there no improvement on the actionable things? Technology has made incredible advances in that time too, enabling us to do so many things we couldn’t do then. Social-media helps us to connect with like minds across the globe, so why have we ground to a halt as far as it goes, for patients? 

It’s really quite simple as far as I am concerned. I can’t really ever find one person who is responsible for a particular task. All of our giant charities work in the way that suits them, very differently and with little collaboration. Most now concentrate on research and very few actually focus on supporting people living with cancer. Those that do are so protective of their brand, they see change as a risk to hurt their future fundraising potential. The NHS is frightened of making any decisions and for them sitting on their hands is the safest thing. Politicians are busy feathering their pensions and do not really want to make any big calls for change, for fearing to upset the voters. Yet everyone knows this is not sustainable! 

But we now live in a world where we are dominated by marketing and advertising, coming straight on to our mobile devices. Most of these brands are using donated money to pay for expensive adverts, telling you what a marvellous job they are doing. People are lazy and are beginning to believe what they are told, thinking all glossy adverts are telling the truth. Many of the large organisations have the Government model of management, where there are so many layers of protection for people, you can rarely find anyone who is responsible. Sensible communication becomes a nightmare.

So it seems that in the cancer world, everyone is working in their own bubble protected from direct contact with people affected by cancer. If you are lucky you may get someone to speak to you on the phone, but more likely is you get buried in someone’s inbox never to resurface. Unless you are fundraising of course, where the red carpet will be rolled out for you. The corporate culture has become about lessening the risk, therefore blocking innovation to improve things. Quite shocking really in a sector that is all about life threatening illness. 

In the last year I have been fortunate to learn a lot about Proton Beam Therapy with patients and physicians. Of course this wasn’t in England, but Prague, a unit not used by the NHS for their patients. In recent years the UK clinicians were rubbishing the impact and cost of Proton Beam, but now it seems the service is actually coming to our country, so I guess they must have changed their mind! I have spoken to patients across the world who only have positive things to say about the treatment, yet the UK is lagging so far behind with this. Yes it costs a lot of money of course, but we need to be looking at the longer term impact for the patients. Can they live a better quality of life than they do now with their current treatment options? 

Who should I complain to about all these issues? Already I talk to politicians regularly. They kindly have a chat, take a selfie and run off to vote about Brexit. I talk to many charities who all tell me that they don’t deal with those things. I look to the cancer leadership in this country, many coming to the end of their careers, hanging on for more recognition, not really wanting to take risks therefore voting to keep things as they are. They think innovation is involving patients more frequently! 

It is sad to imagine the amount of money spent on cancer in the last ten years, still producing no impact. Other than Government, which other sector rewards failure so highly? I believe there should be a public enquiry on why the results are so poor in the cancer sector, but who would organise it 🙂 

As always these are my personal experiences and opinions, so please feel free to add your own below.