It is sad to report that when patients write letters which raise issues, the antiquated, standard reply, ‘I’m sorry you feel that…’ (ridiculed in the 20C as patronising, and worse) is still being used. This device is designed to ignore/change the issue, skirt responsibility and stop a complaint at the first post. It makes patients feel unheard. It escalates their frustration. When used against today’s patients it is more likely to reinforce their determination to press for change.
For many years I reviewed patient information booklets for a national cancer charity, but resigned because nurses alone decided the content of new drafts. They have since been taken over. Recently, I wrote to ask if nurses were still deciding what patients want and need in patient information booklets. This is surely bad practice. The reply I received began, ‘I am very sorry that you have felt excluded.’
I had not felt excluded. I felt the patient voice was – and is – excluded. I felt patients and carers should decide the final content of patient information booklets. The letter continued, ‘At XXX we always aim to be inclusive and to involve people affected by cancer directly in what we do.’
It explained that ‘people affected by cancer are invited to comment on whether the information is easy to understand, if there’s about the right amount of information, whether there are any issues that they feel should be included and whether anything could be explained more clearly’ – all of which, as one of their experienced book reviewers, I knew.
Their reply went on, ‘Our booklets are similarly reviewed by medical professionals for clinical accuracy and advice on what to include. All of this feedback is taken into consideration by our Information Development Nurses as they revise the text. However, the nurses do the actual revision of the text, incorporating these comments where appropriate. Patient reviewers are not involved in the final sign-off of our information.’
Yes – nurses alone revise the text – that is what I was writing about! Slightly amended standard letters are unlikely to satisfy.
I had not felt excluded. But now the issue felt doubly unheard.