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Richard Smith: Are we too concerned with confidentiality? A fable

4 May, 12 | by BMJ

Richard SmithI am the chief medical officer of our family. I am the bridge between my family members, some of them eccentric and one of them demented, and an unforgiving health system. Many doctors—indeed, anybody familiar with the strange language and rigidities of health systems—fulfil the same role, and it gives us some useful bottom up views of our health service.

Most of my endeavours are on behalf of my mother, a marvellous woman who is strong on joy and humour, but who has no short term memory. Together we are on track to write an NHS equivalent of Rumpole of the Bailey (in case you don’t know, hilarious stories of legal absurdities).

Our latest saga concerns her developing cataract. She sat on her glasses and so needed a new pair. The optician suggested she see an ophthalmologist, and some how an appointment was made. I wasn’t sure of the exact mechanics of how the appointment was made, but my brother told me that it was for a time when I will be away. I thus set about changing the date, and my brother gave me the number to ring.

I rang and was told that the office had moved and I had to ring another number. I did. I told the woman who answered that I was ringing on behalf of my mother and wanted to change the date.

“I can’t talk to you.” she said. “I need to talk to your mother.”
“She’s demented,”  I answered.
“Oh, I’ll have to talk to my supervisor.”
I’m put on hold, listening to a very loud version of a Mozart tune played by an unmusical computer. It hurts, but I don’t like to put the phone down.
“What can I do for you?” asks a woman, presumably the supervisor, after a few minutes. I tell my story again.
“Who made the appointment?”
“I’m not sure. It happened after my mother saw an optician. Perhaps it was the optician.”
“It can’t have been.”
“Might it have been the GP?”
“It must have been a member of the public. We only take bookings from members of the public.”
She says this to me as if I’m an idiot. Perhaps I am, and perhaps I should have known that they take bookings only from members of the public. I can’t believe, however, that I’m the only person in Britain who doesn’t know this, and I’m moderately confident that I’m not the biggest idiot in Britain. Even if I am the biggest idiot in Britain she shouldn’t talk to me as if I am.
So, rather to my surprise and without premeditation, I say “Please don’t talk to me as if I’m an idiot.” I’m embarrassed. She’s stunned. But after a pause we resume.
“Your mother must have made the booking.”
“ It can’t have been. Perhaps it was my brother.”
“I’ll look on the system.”
More electronic Mozart.
After a few minutes. “There’s nothing on the system. It must have been your mother.”
“It can’t have been.”
“Anyway I can’t talk to you without your mother’s permission.”
“But she’s demented.”
“In that case, I’ll ring the GP. They should have on their system that that’s the case and that I can talk to you. I’ll call you back.”
As I wait, wondering if she’ll call back, I reflect that she doesn’t know who I am anyway. Just because I say that I’m Richard Smith, doesn’t mean that I am. I also wonder how likely it is that a fraudster would ring up and try and change the appointment of an elderly woman. Where is the gain?

She rings back. “The GP’s system has no record that what you say is the case is the case.” Do I detect a note of triumph in her voice?

“You mean that the system doesn’t record that she’s demented, that she’s booked for an appointment with an ophthalmologist, or that you can speak to me?”

I’m not surprised that the GP’s system doesn’t record much. They often don’t. My mother does have an “official” diagnosis of dementia. I know that because we used it to get an attendance allowance, but we don’t go much to the GP. What’s the point?

“I can’t speak to you about the woman you say is your mother.”
“So we can’t even cancel the appointment? That means that nobody will turn up and the appointment will be wasted.”
She perhaps sees that this is getting very silly. “Let me ring your mother.”
I’m not keen on this. It’s the afternoon, and my mother may well be in bed. Plus she gets a lot of strange calls. “What do you need to ask her? I can probably tell you whether she ‘ll be able to answer.”
“I need to know her date of birth, and whether she will let me speak to you.”
“I’m not sure that she’ll know her date of birth. She’ll let you talk to me.” But how do you know I’m me, I think but don’t say.

Ten minutes later she rings back. “The number on the phone was the number of your sister in law. She says I can speak to you?” How, I think, do you know that was my sister in law? How do you know my mother said that you could talk to my sister in law? How do you know that my mother is happy for my sister in law to say that you can speak to me? How do you know I’m me?

This was not a good experience, but the system is satisfied.

Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.

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  • Mark

    The thing is that your example has nothing to do with confidentiality – you were not asking for any information you didn’t already know to be disclosed.  It has a lot to do with administrative lack of understanding of what “patient confidentiality” is.

  • Dr Simon Jenkins

    Hi Richard.  Good to hear from you even if the reason for your story is an unfortunate encounter with one of the new breed of protectors of confidentialiy within the NHS. Not quite a Caldicott Guardian I fear! The real problem here is not one of confidentialiy but a culture of suspicion which has replaced that of trust, not only in the NHS but in society as a whole. Wishing you all the best. Simon Jenkins 

  • Richard Smith

    You’re right, we should. And blogs are perfectly designed for documenting nonsensical happenings–because they should be written fast and can be posted immediately or within hours. I hope that you will follow your own advice.

  • Torres859

    Helo Richard,
    It sounds like a non-sense novel or a Groucho Marx’ piece of literature.
    Sometimes people takes the power in their own hands and try to rule the world even against basic principles and rights.
    Kind regards.
    J.Torres

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