Reflecting on communication

You may have noticed that one of the topics I keep returning to is communication between medical personnel and patients. I have indicated that I think this could be improved. Partly, this is because, in another life, I worked in doctor:patient communication research; mostly, however, it's based on my own recent dealings with the National Health Service.

So far, I have experienced the following:

• a consultant whose manner discouraged me from asking questions and left me feeling about 2 cm tall when I did.
• another consultant who told me three times after carrying out a hysteroscopy (but before the samples had even been sent to the lab for analysis and never in writing), "I don't think it's cancer".
• a nurse who told me there was no point in me expecting any help at home after my operation, even though I live alone, have no relatives in the same country as me and had been told that I must lift nothing heavier than half a kettle full of water for at least 2 weeks, after which I was to do no heavy lifting for another 6 weeks. Although my situation was known to the medical team, I was left to rely on the kindness of friends and neighbours. Had they not been prepared to go out of their way to help me, I would not have been able to cope at home, alone, but I was made to feel that I was being "difficult" for asking what help was available.
  
• an unfortunate remark from a GP who referred to my cheerfulness "in the face of a life-threatening illness". Nobody else had mentioned that aspect of my cancer - presumably they thought I was probably aware of it - so this was a rather stark (and unnecessary) reminder. The same GP advised me to have radiotherapy "because we missed the cancer last year" - this didn't really improve my confidence! (At least the consultant gynaecologist apologised for the time it took to identify the problem...).
• no communication to tell me that I wouldn't have to go to a hospital appointment I was expecting but had been referred directly to another hospital for treatment
• no communication to tell me what the treatment would be - I only found out by visiting my GP for another reason and hearing that they expected I'd have had the same letter as they had...
• a registrar who forgot to tell me what the treatment would be, even though I was at a face-to-face consultation. I had to ask how many sessions were involved.
• a nurse who clearly hadn't read my case notes and was determined that my cancer was further advanced than it was, leaving me to point out that this was not the case.
• a telephone call that left me believing that new, and very bad, news needed to be given to me (if someone had told me in advance that 'routine follow up' calls are made, then this could have been avoided).
  

On the other hand, I have also had exchanges with:

• a consultant gynaecologist who insisted that I asked as many questions as I wished and didn't make me feel that I had to rush out of the consulting room to let the next patient in. The same consultant came to visit me each day after my surgery, just to chat socially (but obviously to check I was progressing) and made me feel valued as a person rather than as an annoyance. Indeed, this consultant encouraged me to ask questions whenever I meet a consultant, no matter how exalted, and gave me an overview of each of their colleagues' communication styles, thus providing an insight into what to expect.
• a team of radiotherapists who were constantly cheerful, supportive and helpful and who encouraged questions
• a registrar who explained very clearly how I would receive information about my check-up appointments and who also reassured me that because my cancer was "very early stage, we are not expecting to find anything when you come back." The same registrar was also extremely supportive of my request to have a female member of staff carry out any physical examination necessary. At the end of the consultation, I felt that I had been listened to and that my input had been taken seriously.
  

Why am I summarising this here?

Recently, two medical professionals have told me that they have found reading my blog interesting because they had not realised what it was like to be on the receiving end of treatment. I find this heartening. I'm writing this blog in the hope that current - and future - radiotherapy patients may find it helpful to know what to expect, particularly if they, too, need pelvic radiotherapy. My own experiences have demonstrated to me, however, that there are areas where effective communication between patients and their medical team could make a huge difference to the relationship between them. This is, I think, a really obvious statement to make, but it does seem that many medical personnel have no idea of the effect their mode of communication can have on a patient's morale - some of the exchanges I've been involved in over the last few months have left me totally aghast, distressed and angry, while a little thought about the "patient as a person" could have avoided this. Where communication has been good, it has been excellent, but where it has been less good, this has ranged from the thoughtless to the downright unpleasant and rude.

At present, I'm feeling optimistic. Last week, however, after receiving the unsolicited phone call, I was a quivering wreck! How something is (not) said is as important as what's said. Apart from the first example I gave here, all the less-than-effective communication with me from my medical team has been given politely and pleasantly; unfortunately, it has had the effect of upsetting me badly because how it was said was at odds with what information was presented. I don't want to be told that it's unlikely to be cancer if there is no evidence to suggest that it isn't; I don't need to be told that cancer is "life-threatening"; I don't want information to be withheld from me but given to my GP; I don't want to have to ask for information that should be provided to me - I'm a person, not an experiment!; and I don't want to be worried by being given incorrect or incomplete information.

Being a prisoner of the National Health Service has certainly demonstrated very clearly to me that the patient's needs don't always come first...