I was recently engaged in a study to assess the information and service needs of people with serious mental health problems, when a young woman told me:

"When I am ill, I want to be sure that I receive the best treatment available; 
  when I am better, I just want to get on with my life."

At the time, this statement provided justification for Hafal’s approach to collecting ‘evidence’, which is to record statements in a book, as their members make them. When the appropriate consultation paper is published, the comments are available for use. It avoids the need for Hafal to consult its members when they are either too ill to comment or well enough not to be interested. We can all learn from this approach when seeking appropriate, accessible and timely methods of consultation.

However, this comment has also a deeper personal meaning for me, whose quite well-developed cancer was discovered by chance and not through screening. How many of us, when we are ill, can really be sure that we receive the best treatment available? And what do we mean by the ‘best’? Is it the treatment that produces the best long term outcomes, or the treatment that has the least limiting side effects and allows us to get on with our lives most easily? I went through the cancer treatment with the distinct impression that there were two battles going on – my Oncologist was fighting my cancer, while I was fighting to retain the comfortable, pain-free life I once knew – this was never a subject we talked about. The NHS ‘system’ is like a sausage machine, seeking to respond to the needs of the whole population, but insufficiently seamless or adaptable to the needs of any one individual – and the ‘fit’ to one’s personal needs is often very poor.

The other lesson from all this, one which I plan to do something about, is that if you want to be sure of receiving the best treatment available and achieving the best quality of life afterwards you need first class information, advice and support. I was extremely fortunate in being ‘information literate’, in being able to ask the right people relevant questions, in having sympathetic and supportive practitioners with whom I could communicate, in having knowledgeable friends and associates, and being able to afford commercially provided treatment and equipment. However, for those people, who do not have the energy, motivation, or means, this is simply not available – and often people are left in a state of depression and morbidity, regular visitors to their GP and an ongoing burden on the NHS. It could be so different.

I was so pleased to hear of the initiative of Macmillan Cancer Support, which is working with Rhondda Cynon Taff libraries to provide appropriate information in libraries and train its library staff in dealing sympathetically with enquirers. Macmillan is hoping to spread similar initiatives to other parts of Wales, part of a strategy which I hope will lead to better understanding of and responsiveness to the information needs of patients and those of us living with the legacy of treatment and wanting to get on with our lives.

I would like to know of any other initiatives in this area – please post on the blog.

Written by Katherine Hughes, WIHSC Associate