I had already decided the subject for this weeks blog when I spoke to an old lady, who was looking very lost in our local supermarket. As usual my wife was trying to hurry me up, but as most of you know I do like to talk to people, and this poor lady appeared to be very confused. Naturally I asked if I could help with anything and she immediately started telling me about how her husband had died of cancer recently. Wow, I thought, why has this happened? She had no family, and had not spoken to a medical person since. In a short time I did my best to recommend that she seek professional help. But that meeting has had a profound effect on me! My wife calls me a magnet for people to talk to and maybe she is right? She is always smiling as a ten minute shop can take me an hour whilst I chat my way round the store. To be fair I have always been like that, but I do so much enjoy listening and learning about people. Ironically in this part of my life it has been an incredible asset in the work I do, so maybe there is a plan to life that we don’t know about?
On Monday I attended my monthly Prostate Support group meeting at my local cancer centre, where I help facilitate a large group of patients and family members. I have been doing this for about seven years now. It is a fabulous group with a great mix of old and new experience to share. It is an excellent way of learning what is happening in another tumour type to my own. During meetings like these, there is always good news and bad to share but this time there was a very common theme, the impact that treatment of their disease has had on their lives. As in most cancers there are numerous treatment options all leading to the possibility of different side effects. Some of the most common ones include erectile dysfunction and incontinence, often leading to psychological and emotional issues. This session was taken up by so many talking about how their lives had changed dramatically after treatment. In many cases they were living with these issues for years, making a reasonable quality of life extremely difficult. Many having to wear pads now ‘just in case.’ Add poor sleep pattern and body image to the picture and you can understand the difficulty of living a normal life.
What I am still failing to grasp is the real lack of aftercare support, as highlighted by my chance meeting with the lovely lady. We all know the psychological issues that cancer can have, particular those people involved in healthcare. My worry is that the reality is, that there just isn’t enough of the right support available in the current system, and never really will be. The NHS is wonderful when dealing with saving lives but for peripheral services can be very difficult. It can be the things that make a real difference to your quality of life that are missing. Physiotherapy, counselling and psychological support to name just a few. But with so many issues common to many cancers, why does it still come as a surprise to many patients? Why are we not doing more to put these services in place?
There seems to be a massive advancement in treatment for many cancers, but little improvement in relative terms with cancer support. My personal view is that it would be more than cost effective to do this and would certainly stop many people returning to primary or secondary care with issues that could be dealt with in a more community setting. The need is obviously there as various smaller services are springing up all over the place, to try and fill the gaps, but here sustainability is the issue. Without the marketing and publicity of larger organisations it is very difficult to flourish long term, so we obviously need a much more coordinated effort.
To help people in a community setting would have so many benefits for society as a whole and would take some of the strain away from frontline care. Yes it would take some organising and money but we would all receive a great payback from this way of working. We cannot keep pretending that these problems do not exist, people will need help to continue to play a more active role in society. This will not be achieved the way we are continuing to work, we require leadership from the large health organisations to make this happen. Very quickly 2020 will be upon us when it is projected that 50% of our population will be affected by cancer, which is frightening if you really think about it. Half your family and half of your work place? More of us surviving the disease is a wonderful thing but we will need help to continue leading a productive life and become less of a burden on our health service.
Survivorship is bringing us unique problems, many not physical but more emotional and practical. Not just for cancer either, but many long term conditions. Dealing with our illness is great but unfortunately there is now a lot more help required. We are fortunate to be in the age of technology, and I believe that it will have a big part to play in improving things, however nothing can replace the face to face warmth of a listening ear!
Do you have any ideas that can help us improve long term support? Have you seen any positive areas of support that are making a difference? Please feel free to share your thoughts and opinions below.