‘Re: Do you know what your patient is thinking?‘, BMJ response, 28 January 2015
Mitzi A J Blennerhassett, medical writer/author, Slingsby, York
“When we are ‘new’ patients, we usually find ourselves in an unequal situation, with less knowledge about our condition than our doctors, dependent upon them for information as well as for their clinical expertise. Even as a seasoned patient activist, with ‘expert’ knowledge and experience about my medical condition, I still find myself disempowered in clinical consultations, mostly unable to say what I am thinking or feeling. This disempowerment is even stronger when I sense I am being patronised: frustration and outrage begin to overtake my wish for rapport and mutual understanding.
Imagine being unable to access treatment for midline lymphoedema that is seriously affecting your quality of life – clothes do not fit – the extra weight exacerbates painful conditions. Yet when you comment that it seems unacceptable you cannot access lymphoedema treatment for this side effect of the nhs cancer treatments the response is ‘but it was those very treatments that have kept you alive all this time’.
I wanted to say, ‘I do not need reminding that I am lucky to be alive – and I am reminded of the treatments by the daily pain of side effects’. Yes, I am lucky, but I should not have to preface all my requests for treatment side effects with thanks for being alive.
Doctors’ words can be well-meaning – perhaps trying to make patients see the positive side of life – but it felt as if I was being told to be grateful. The lack of understanding took my breath away, but before pent up tears choked me into silence I managed to answer, ”That’s like saying to someone, ‘What are you crying about? You’ve had a mastectomy and lost a breast – but you’re still alive!’
I was reminded of the doctor who, after aggressive cancer treatments, dismissed my request for my prognosis and TNM staging with, ‘What’s the matter with you …why don’t you go out and get on with your life!’
As a patient advocate, I have been very fortunate to be able to work alongside patient-centred health professionals trying to improve health services. I suppose I have become used to being treated with respect and having normal social interaction with doctors. Nowadays, it is easy for me to distinguish between those health professionals who have had experience of user involvement and those who have not. And it hits hard when, as a patient, I come up against such old-fashioned attitudes.
It was the need to let doctors and others know what I had been thinking and feeling during my experience of cancer that prompted me to write my book, and to include discussion sections after each event looking at the effects on me, along with research references for better practice. Almost without exception, patients and doctors’ feedback has been that it should be read by every doctor and nurse because it allows the reader to ‘get inside the patient’s head’.”