Confidentiality in mental health: negotiating the negotiated order? Tony Evans SPSW University of York

Confidentiality Keeping private information confided within a ‘clinical’ relationship Important health right Particularly in mental health

A problematic right Public Interest - Balance of judgment European Convention Artl. 8 - not absolute Joined up services - IT Mixed economy of care

Negotiated Order Perspective (NOP) From a study of the operation of psychiatric hospitals Complex organisations involving vague goals employing range of professional actors. Organisational policies not applied uniformly, reflecting the choices and preferences of local actors

Negotiation(s) negotiation with ‘… the process of give-and-take, of diplomacy, of bargaining — which characterises organizational life’ (Strauss et al ). negotiating one’s way past an obstacle seek to get around their superiors using techniques such as: ‘… withholding information and displaying varying degrees of cooperativeness in charting or in attending meetings …’ (ibid: 159).

Confidentiality and the NOP Managerialism - nowhere to negotiate? Rules and spaces From total institution to community: changing context of service user/professional relationship What rights? Whose rights?

The Study 4 MIND day centres 6 women, 11 men, all white European Interviews–themes: experience of confidentiality practices; views of confidentiality; response to context -Group not representative + Making connections, extending understanding, questioning assumptions

Importance of Confidentiality Safeguarding privacy Relief / unloading AND participation, providing information as part of process of understanding and deciding what will help

Experience of Confidentiality practices Understood official confidentiality Patchy information about rights from professionals Learnt by experience/from peers

Contrasting experience ‘He’d [the psychologist] said the notes he was writing was for himself, and they obviously wasn’t. Because then [the psychiatrist] had them in front of her…I started thinking, well, hang on, how many other people know about it here?’ ‘…when I was with her she never, ever made a note. She never wrote anything down unless she was telling me what she was doing and why she was doing it. But then it never went anywhere unless she found that I needed more professional help…’

Disclosure and confidentiality Their views Disclosure: No—Crime— RISK —Care Routine exchange One to one - seek permission To agency - only what’s necessary

Confidentiality and wider information rights DISCLOSURE INTERPRETATION DECISION-MAKING

INFORMED DISCLOSURE ‘I’d like to know more why the questions are being asked. We should be more...more respected. I think we should be allowed, if we don’t want to talk about it, not to say anything’.

SENSITIVE INTERPRETATION ‘You’d say a word, and they’d make such a thing of it. I would say “this is how something happened”, but then to have it written in my case notes that it was paranoia – I know it happened. I can look back. But it was just put down as paranoia – no acknowledgement of my truth. It was as if they didn’t believe anything I’d said. They just recorded their own interpretation.’

SHARED DECISION-MAKING ‘I would have liked to have had more information about the whole process of the assessment…I feel that sometimes they feel empowered by the knowledge that they have and that the patient won’t understand their condition as well as they do… rather than actually being explained what it is so that they might be able to do something practical themselves…’

Assessing Confidentiality Small Minority Disengaged - fixed distrust Most cautious engagement - conditional: ‘... there are some you can’t converse with in there, and there are others, a few, that you can’.

Negotiating Confidentiality Tend to start with idea of negotiating with professionals But if distrust/lack of respect negotiate around : avoiding disclosure: ‘The only way I can test people is if they’ve let me down. And they’ve let me down in a way where, that’s it, if that’s the score, I’m not going to say nothing else.’ ‘playing the game’: ‘I feel I’ve got a constructive relationship with my current consultant, but at other times I’ve played the game, known what answers to give.’