I feel that I can add value, as when talking to decision makers I can speak as a patient, and when talking to my fellow patients, we can discuss what improvements to the system, we require, and I can talk about some of the things that are in the pipeline.As you will see from my blog and those of you that know me, will know, that improving the lives of people affected by cancer is my crusade, and no matter how many improvements are made, we still have a long way to go!
One of the biggest problems that we all face, is that a cancer diagnosis affects everyone differently. All of our emotions are brought into play at the same time, but different ones take over, in all of us. For example, some of us are overtaken by fear. For others, anger is the driver. Relationships, can get stronger or weaker, so many things can happen.Even we as patients just don't know how we are going to feel from one day to the next.
All of the above mentioned, are fabulous additions to our weaponry, for our battle with cancer, but after all these years I keep finding the same gap, and the same requests. People want to be able to talk to people!!! In most instances, not necessarily a qualified counsellor. They just want someone to listen to their issues and just provide a sympathetic ear.
Sure, it is very difficult, to talk to someone who has a serious illness. I sometimes find it difficult, even though I have been doing it for a long time now! In most cases, saying nothing is worse than saying the wrong thing. I know from personal experience, that people really appreciate being spoken to in as normal a manner as is possible. After all, we haven't just dropped from Mars, we just happen to be sick.
The title of this blog post was quoted to me, by someone who has had more than one encounter with cancer and struggled to find the form of support that they required. It was a great quote and came from the heart, but it really summed up for me, what is happening out there. Or rather, what isn't!
Of course we need statistics and feedback to be able to measure our supposed success or failure in tasks that we are undertaking to try and improve things. But in a lot of instances, patients are still treated as numbers, percentages etc. Most of these results come from complicated surveys and questionnaires, which in a lot of cases are loaded towards a certain answer. How many complete them, and how representative are they really? I appreciate that we are all a number in the great survey of life, but we are not JUST a number!
What about actually talking to people. My experience tells me that we need more people talking to patients. This doesn't have to be paid staff, it can be professionally trained volunteers/ ex patients. Maybe doing teas/coffees or simple roles, just chatting to patients, making them feel at ease in busy areas. Not just 'meet and greet' but a few steps on from that.
In the cancer sector, there are more people wanting to volunteer, than there are roles for those people. One of the greatest emotions that people who recover from cancer feel, is an over riding urge to give something back! The people are there, and very willing but the system just continually keeps providing hurdles.