Power, Control and Responsibility

I had an ECG this morning, as part of a set of routine checks prior to a scheduled admission to hospital next week for a diagnostic procedure (my lovely surgeon wants to have another look in order to plan the major surgery he thinks will be necessary ere long). I’ve not had an ECG before, and was of course interested in the process and equipment, and particularly in the result which came out of the side of the machine on a beautifully printed sheet of figures and lines.

‘Could I have a copy please?’ I asked the girl who had stuck the electrodes on my chest and legs and turned on the machine. ‘No you can’t’, she said, ‘we don’t give them out’. ‘Why not?’ I asked. ‘Because of confidentiality’, she said. ‘But it’s my heart’, I said, uncomprehending. ‘Well it’s fine’, she said. ‘Are you a cardiographer?’ ‘No, I just have an interest in the beatings of my heart’, I answered, but she had left the room.

I do understand that most patients are probably only interested in the ‘it’s fine’ bit and do not care about the squiggles on the bit of paper that represent electrical activity in the heart. Probably the said squiggles would not have meant very much to me anyway. But they were my squiggles.

For the most part, the health professionals I have come across over the past few months (and there have been many) have been really informative as well as caring. My GP is wonderful. The staff in the local surgery are very obliging now (Dee has them well trained) when it comes to handing over blood results. However, there have been occasions when a consultant has been looking at a screen or a report and telling me things I am not really taking in, when a copy of the report would really help me to understand what is going on. I’ve never actually seen any of the many CT scans that have been taken of my chest and pelvis, and I’m curious. I appreciate that this is not what everyone would want, and the ‘it’s fine’ bit is the crucial point of any diagnosis, but I get quite vexed when it feels like people are holding information about me that they are not conveying, for whatever reason. And information about me should surely not be withheld from me because of ‘confidentiality’ (especially if that’s being used as an excuse for ‘you are not qualified to understand this information’ or a euphemism for ‘you might panic if you did’).

I also feel that this ‘doctor knows best’ attitude does not really serve the national health service. Instead, it perpetuates the sense of a national illness-treating service. To be truly healthy, we need to be interested in our own well-being, engaged in the identification of the problem and implementation of the solution, and empowered to do all we can to support our own recovery. This applies whether we are talking about cancer or a throat infection. I like to know, or at least to have the option of deciding whether I want to know or not. But at any rate, my heart is just fine thanks.


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