I am a survivor of childhood leukaemia. I had a bone marrow transplant and have experienced multiple complications as result of chemotherapy and radiotherapy treatments. Recently I have had three episodes of spontaneous pneumothorax (collapsed lung) in 14 months. Healthcare consultations are crucial to my well-being but are sometimes unsatisfactory, particularly in evidence-based shared decision-making. I reflect on my experiences and suggest how this might be improved.
To ensure my important follow-up appointment with the thoracic surgeon was evidence-based and truly facilitated shared decision-making, I reviewed the most up-to-date evidence on my condition, and sent a letter and one page summary of my main concerns to the surgeon a week before the appointment. I also brought a list of questions. I hoped these two strategies would prepare both me and the surgeon for our discussion.
I was seen by another doctor with no knowledge of my background or access to my history, who had not seen either letter or summary. I then briefly spoke with the surgeon, who had received my letter and summary, but the interaction was hurried and limited. The doctors' body language – standing – communicated rush. Therefore it did not seem appropriate to discuss associated mental health issues, or the evidence base. Instead, I ensured all prepared questions were asked and took notes of the answers.
A list of questions is an essential minimum for important appointments to ensure key information is communicated. A letter and/or summary may help facilitate discussion, however on this occasion any benefit of the letter or summary was lost due to time constraints.
Patient or healthcare consumer involvement:
I am a patient and this is based on my own analysis and reflections.