Surviving cancer can frequently feel like you are living with a very fast ticking bomb! Time feels like it is slipping through your fingers and there is just never enough of it. Having said that it also seems that any interventions you need for your disease take far too long. Our perception of time seems to have changed. Since my own diagnosis and life changing experiences, I spend most of my time working in a cancer environment, with either patients or clinicians. Having done this for many years now I find that I am working more frequently in the international arena, which I really enjoy.
I have always insisted that large healthcare organisations including charities and pharma just do not move quickly enough to help people such as myself. Of course there is an issue of safety but I believe that the red tape in place today is a hindrance to good progress for people affected by cancer. Frequently I hear the old chestnut about nobody wanting to find a cure for cancer because a lot of money is earned looking for it. I am certainly not in that camp, but I do believe that things could be a lot more efficient and should move more in relation to the severity of the situation!
More of us are being diagnosed with cancer than ever, yet we are no closer to finding a cure than we were. Technology is helping us make massive steps forward in most areas of our lives but experience is showing me that this sector is still lagging behind most countries in the world. In reality we know that few things are as immediate as ‘Amazon Prime’ but we are dealing with one of the biggest killers of our lifetime and we need things to be much more timely. The Internet is a great ‘equalizer’ for patients, meaning we can communicate much better and put pressure on the powers that be to improve things. But why should we have to?
Recently I have had several conversations about end of life care and accessibility of clinical trials. The current system is extremely complex for both patients and clinicians. Naturally there are many very strict rules concerning this issue but they vary from country to country. New trials are being started so frequently it is almost impossible for any organisation to keep up with what is happening. We have now reached a stage where patients will not accept that there are no options left for them. Particularly when young children are involved. Of course there are trials available, and people are now trawling the Internet for viable options.
Even cost is less of an issue now as people look towards crowdfunding or similar options. This area is now becoming like the ‘wild west’ with everyone looking to offer ‘cures’ for cancer. It is a very challenging situation for everyone, when emotions take over from logic. Personally I would be looking around at what options there are, if I were in that situation. But almost ironically I am also having conversations with international organisations that have knowledge about trials taking place, but can’t find the right fit of patient! Yes the system must always be there to protect the patient, but has the current one become counter productive?
My personal experience is constantly showing me the weak cancer leadership we have in this country. Many of those people have been in the job far too long and have run out of energy and ideas. There is a constant refusal to use the incredible patient experience and expertise in any meaningful decisions. Large charities are starting to use the word collaboration, but are keeping a careful eye on their own fundraising pots. ‘Brand’ is still coming before what is best for the patient.
Time is the most important resource we have below health, and is something that you cannot buy! We all deserve better, because all our lives are affected by cancer in one way or another. Technology is helping us in so many ways but in the instance of cancer I believe it is humans and archaic systems that are preventing more lives being saved. The same applies to those of us living with the side effects of treatment.
As always, these are my personal views and experiences, please feel free to add yours below.