Pain. Fear. Death.
At the beginning of conferences and events my colleague and I used to ask the audience to think of the first word that came into their heads when they heard the word “cancer”. The result hardly varied from the three words above; the audience was inevitably made up of health professionals. This was in the 1990s, not so long ago, but a time when cancer was surrounded by misinformation, ignorance and fear. Just like mental health today, cancer was stigmatised. At the Health and Care Innovation Expo 2014 we considered the question Is the term ‘Mental Health’ doing more harm than good and what can we do about it? Surprisingly the audience view was that the fear and prejudice that create stigma are prevalent among health professionals and the consensus was that these are the people we should tackle first.
During a period of massive change in cancer awareness and care there was a similar finding. We encountered oncology doctors and nurses who never said the word cancer to the person with the disease, nor to their families. Imprecise language was preferred, words like “growth” or “tumour” or “lesion” and underlying this avoidance was a fear of naming the thing that horrified. People with terminal cancer were not always told their prognosis, apparently to protect them, which was at best paternalistic, but in reality to protect the professionals in their fear of their own mortality. Cancer after all will occur in one in every three of us in our lifetime. In our training programmes we made further discoveries. Mature, experienced health professionals held beliefs that were based on folk myths, misunderstanding of biology and a parochial complacency about lifestyle.
Some of the victim blaming persists to this day but back then we were more shocked to learn that a nurse, for example, could hold the belief that breast cancer was causedby being knocked on the breast earlier in life — say in a playground injury. Or that if a surgeon cut a tumour in the wrong place, the cancer would go wild, proliferating at an even greater speed, like some body-devouring parasite. Many people at that time believed that cancer could be brought on by negative thinking and the tragic corrollary of this was that some people died believing they just hadn’t been positive enough to heal themselves.
While it may be too contrived to draw exact parallels between cancer as it was widely understood then and mental health (or illness) as perceived now, there are important similarities nevertheless and lessons to be learned. The situation for people with cancer improved considerably in the 1990s and has continued into this century. Changing attitudes and challenging stigma were the necessary pre-requisite for service improvement in a country that lagged seriously behind our European neighbours on survival and recovery. The Europe Against Cancer programme launched in 1985 with the ambitious goal to reduce the expected number of deaths due to cancer by 15% by 2000. It was implemented across member states through a partnership approach with scientific experts, cancer charities and anti-smoking groups, health media, health professionals and national civil servants.
In England a better informed workforce with a more aware and less fearful public meant service transformation had to follow and it did. When my own cancer was diagnosed in 2005 I was able both to speak about it openly and to benefit from cutting edge treatment and an optimistic prognosis, none of which would have been assured fifteen years earlier.
Attitudes to cancer may still have a way to go — I for one would like never to read again that someone …… “lost the battle with cancer”. We are no more at war with cancer than with psychosis or OCD. But I imagine it is much less common now than it was twenty years ago, for someone with a diagnosis of cancer to find friends and neighbours crossing the street to avoid them. Can we say the same of someone with schizophrenia? If we are serious about eradicating the stigma of mental illness let’s learn the lessons from what has gone before. Think global, set ambitious targets, work in partnership and understand that change is incremental – and it comes from the people.