I have been privileged to spend the last few days at a hotel, (yes hotel!) for people affected by cancer. A more detailed blog of that experience will follow, but having spent a considerable amount of time with many people facing challenging health issues, I can understand much better the problems faced by us all, communicating about cancer. My trip also included a talk to a group particularly focused on the twenty to forty year age group, so my experience encompassed a good cross section of ages.
Everyone I spoke to had their own unique experience, and in every case, their requirements were different to others. Some wanted more information, others didn’t. Some had decided to continue with a very toxic regime of treatment, others had decided that their body had taken enough punishment, and were taking their last holiday whilst they could. Such a wide variety of experiences. But cancer was a common bond, and there were no awkward silences, in fact there was a lot of laughter taking place, which I found extremely powerful!
This got me thinking, how does a ‘one size fits all approach’ work effectively, if everyone needs something different? The massive positive that came out for me, was that virtually everyone was happy with the treatment they were receiving, which is fantastic! However the major concern was that very few people could find the support they were looking for. Either, in many cases it just doesn’t exist, or frequently it was extremely difficult to find. There appeared to be a very much ‘luck of the draw,’ effect if you found what you required.
I have quite a good personal overview of cancer support around the world, and there is a lot of wonderful work going on, but it does concern me that there seems to be very little coordination going on. It feels very much like everyone is building a road, but no one has thought to invent a map! My concern also is that I rarely see policy and decision makers engaging effectively with the people they are supposed to be helping.
Effective cancer support is not some fluffy world where we all get paid to eat cake and have fun. It is about improving people’s lives, even if it is in a very simple way. Most of the problems that we may encounter, generally lead back to some form of poor communication. My experience has shown me that the more levels of an organisation that are introduced, the worse the communication becomes. What is required is that the decision makers communicate better with the service users.
As our world is changing so quickly, we need to be able to adapt quickly too, and what I can see in the cancer support world is that smaller organisations are able to do that, and provide effective and tangible support. But the larger you are the more difficult it is becoming to offer the correct services that are required. Local knowledge is certainly a very powerful thing, and what is working in London, may not be the answer to issues in Wales.
The care of people affected by cancer, outside the clinical environment and into hopefully survivorship, is becoming a massive issue. It is no longer good enough to point people towards generic booklets, websites and forums and expect them to be able to pick up their lives where they left off. Of course, these things are an improvement on what went before, but I would like to compare what differences I have seen personally during my own journey.
Seven years ago, my own cancer (mantle cell lymphoma) was extremely rare and there were only a few options available for treatment. Most not particularly successful in the longer term. When I was diagnosed I was assigned a Macmillan nurse, given a lot of literature and treatment commenced. Once I left hospital, that is where my support ended. Now there are many different treatment options available for my disease, and although it is still considered incurable, outcomes have consistently improved. If I then compare how we support new patients, very little has changed in that time. We have more modern devices to check out the internet, and in many cases nice new units to make us feel more comfortable during our stay, but we are still handed a lot of literature and left to fend for ourselves afterwards.
More and more money is being raised each year in the name of cancer, obviously a lot of it is being used well as treatments and research improve outcomes, but I am questioning the practical support issue. I certainly see ‘pockets,’ of improvements in this area, but is it what is now required to keep pace with the increasing survivorship figures? I make no apologies for emphasising that people affected by cancer do not have time on their side, and cannot wait for ‘working groups,’ to decide what is required.
My piece talks about how we all require different things, and my experience in recent days has shown me that one thing nearly everyone wants is a listening ear! Not always psychologists or psychiatrists just someone to hear their story. A trip out, a drink in the bar or sitting in the sunshine, mostly simple things are the things that mean the most to people who are seeing their own mortality. Our cancer support and aftercare must quickly start to reflect the improvement in cancer outcomes.
As always the above are my opinions based on my experiences, I would love to hear yours, and please feel free to share them here.