In recent weeks I have been busy giving presentations to organisations interested in the work of our charity Your simPal. Wherever I go, without fail I am approached by people who want to talk about someone they know and their experiences. Cancer is finally not so much the ‘elephant in the room’ and people are now more comfortable talking about it. As well as talking face to face, we are now approached regularly via our Freephone line by people who just want to talk. During the last few weeks I have been supporting some good friends of ours who have just retired but both have been diagnosed with cancer within months of each other. They have become confused and angry as nobody has taken the time with them to actually talk. Not psychologists, but just someone who understands key parts of the journey they now face.
Poor communication is still one of the biggest issues faced by this society. There is no doubt that technology and the Internet has made things a lot easier and we have so many ways now of getting our message out there. In fact we have so much interactive communication that we are spoiled for choice! But the quantity cannot cover up the lack of true quality and impactful engagement. We can see around the world how politics are changing with the influence of social-media, quick button pressing and sharing to targeted audiences can very quickly encourage change. But this system still relies on humans. In contrast, I am waiting for an email, from someone who hasn’t even acknowledged it, let alone given me an answer! The systems can be instant but if we don’t use them properly they are of no use.
We have come a long way in our dealings with cancer. Not that long ago we referred to it as ‘the big c’ when we whispered in corners. Now we have progressed to handing out booklets. This was seen as a massive step, but we seem to have plateaued a little now. Yes there is technology, yes there are online resources, but what we really need is the human touch. My opinion is that more time taken then would save a lot of anxiety for the patient and relatives further on in the process. Yes, I agree, individual nurses and doctors are too busy in general but I feel that there should be people available to talk to you about the non-clinical issues. For example finances, physical issues, day to day planning etc. Having an illness like cancer feels like having another job, but without the pay! Time spent in hospital and recovering, with no time or inclination to do the day to day stuff.
Of course the physical issues are massive, but made a lot worse by the psychological and emotional connection. We experience this also on our Your simPal helpline. People ring us purely to talk about their problems, and less about phone queries. The desire to speak to people who can empathise is incredible. Why can we not offer this service at the start of treatment? Normally it is very challenging to deal with, by the time the professionals have to get involved. Surely prevention is better than cure? Using this model will be cost effective and resource light. It’s not really a science in my opinion, and can even be done by using volunteers in certain parts of the process.
Mental health seems to be a very popular subject, and many people affected by cancer also have mental health issues, stimulated by a cancer diagnosis. The simple facts are that we just don’t have the support available for all the people affected. So why don’t we get people involved earlier in the process? We already know that many people will suffer with emotional issues, so should we not try to avoid them happening?
What we are seeing is that we are all using different forms of technology to communicate in our own style. But what really is important to understand is that nothing replaces the word of mouth and eye contact. Since my illness my new currency of choice is time! If you have some, money is easy to give, but time much less so. It is easy to see how much you truly value someone by how much time you give them. The same applies in reverse, you can see your own value to others. Have a quick look into your own life and see who your real friends are?
We must find more efficient ways of investing time in people early on their journey. The facts are staring us in the face. The cancer numbers are increasing and the amount we have to spend on support is getting less. If we don’t start learning now we will quickly be in the middle of a health crisis. It’s incredible that many of us can now survive cancer, but now it is much more about living a meaningful life WITH cancer. We must be more open to new ideas as obviously the old ones are not working with the survivorship issues we now face!
As always please feel free to share your views, ideas, and experiences below.