Personal Views

All treatment and trials must have informed consent

BMJ 1997; 314 doi: https://doi.org/10.1136/bmj.314.7087.1134a (Published 12 April 1997) Cite this as: BMJ 1997;314:1134

In 1987 I was diagnosed with late stage cervical cancer–despite three negative smears that year and numerous visits to the doctor. I was told that I was having radiotherapy. I asked many questions, and my consultant explained the treatment as though it was a tried and trusted method, established for years. Eventually I was given the “all clear” and resumed my career. Six months later I returned to the hospital with severe faecal incontinence. I was advised that I might have radiotherapy damage and that I was “unlucky.” I was then referred to a bowel specialist. He gave me unstinting support and inexhaustible, honest explanations. I never saw my radiotherapist again.

I was shocked to realise that I had not been informed of any risks before I consented to what turned out to be experimental treatment, only tested on mouse tails. I was admitted for a temporary colostomy and to have my rectum rebuilt. I met other women with radiotherapy injuries on the ward, and we had all been led to believe that we were unique. I was admitted over 100 times and had 24 operations, for adhesion attacks, a hernia operation, a permanent colostomy and urostomy, an operation to remove compacted faeces, formation then removal of both a rebuilt rectum and …

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