NHS Information Sharing – Silos and Spillages

I’m currently trying to get my fracture care transferred from one hospital to another. The NHS appears to have few mechanisms for referral to a fracture clinic other than to present at A&E.

The big hospital can’t view the x-rays taken at the little hospital.

Ah, the information guardians say, you can’t be too careful.

Yes, I say, you can. Not sharing my fibula x-ray is too careful.

But at least these defensive non-sharing siloed systems protect us against confidentiality breaches, don’t they? No. They don’t.

I’ve been doing some work with Liaison Psychiatry, primarily on writing a care guide so that in future I get safer care in hospital. Once we’d finished the ground work on that, we used some sessions to talk more generally about things I was struggling with related to my illness and also my past – for all of us bring our whole selves to our illnesses, strengths and wounds.

I had agreed to share the care guide sessions with my consultants. The other sessions were supposed to be confidential – though I had given consent for them to be shared with my GP, who I tell pretty much everything to anyway.

My psychiatrist wrote some session summaries. After that she wrote an outline care guide, and duly marked the care guide to be CC’d to my consultants. Unfortunately it seems that the administrators executed the sending of the letters containing summaries of our confidential sessions after the care guide. The ‘system’ carries CC information per-patient, rather than per-letter. With hindsight my consultant should and could have marked the letters ‘GP and patient only’, but she hadn’t anticipated the CC being attached to them.

The outcome is that the notes of my confidential sessions with the psychiatrist were accidentally CC’d to my medical consultants.

I realised the mistake (though I didn’t know that it was an error) when my own copies arrived a week later than they received theirs. I saw their names on the CC at the bottom and was shocked.

I’m gutted. There is no other word for it. Psychiatry and psychotherapy offer – should offer – sacred spaces that are only fractionally less confidential than the confessional box.

No malice was intended, but harm was done.

This is my experience, my unrelenting repeated experience, of the NHS.

Sorry, we didn’t mean to hurt you. We’ll try harder next time. And look, it’s not really bleeding that much…

In this case my psychiatrist had the courtesy not to try to minimise the harm that was done. Relying on the NHS on a regular basis is like being trapped in an abusive relationship. You can’t leave, so you just have to tread carefully and try to dodge the blows when they come. As patient you end up paranoid, terrified and constantly trying to second guess what cock-up will come next.

So. On the one hand, I cannot get information sharing between two fracture clinics about my unhealed broken ankle. On the other hand, my deepest, darkest most shameful secrets are accidentally shared with people who I very much didn’t want to know them. Doctors with whom I have to keep an ongoing relationship. The letters were ‘withdrawn’ but I will never know whether they read them. It makes me want to vomit at the thought of seeing them in clinic.

I won’t ever disclose anything to an NHS psychiatrist again, because no matter how well intended and excellent they might be (and I believe mine is), they operate within a Total Institution – within systems designed for the benefit of the institution, or the staff, not the patients (victims? prisoners?)

At some point I will probably go back to private psychotherapy to deal with the fall out of having my confidentiality breached in such an extreme way. At the moment I can’t access private therapy because I’m waiting for my fracture to be mended. What a beautifully screwed up health system we have when it comes to information sharing.


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