Barriers to receiving information

Those interviewed highlighted a number of barriers to receiving information and support.  Some forensic carers reported feeling frustrated and blocked in their attempts to access information, from hospitals in particular, but also failing to get replies from agencies such as the Mental Welfare Commission for Scotland (MWCS).

Many carers were subject to significant time constraints, relating to their job responsibilities and patterns of work.  This meant they could not always get to carer support groups.  Also, the frequency of visiting constrained the quality of information exchange for those who preferred face-to-face contact, this being most acute in relation to the State Hospital if significant travelling distances were involved.

Confidentiality barriers and other limits on information sharing were reported.  Interviewees spoke of different approaches or cultures.  They appreciated it when units adopted an open approach to information sharing because the service saw this as beneficial.  At the other extreme there might be much stricter limits on information sharing:

They don’t like people sharing things because, you know because there’s this kind of veil of silence.  (mother)

Examples given demonstrated there are different standpoints on what is or is not confidential relating to, for instance, information about significant events and interpretations of what could be disclosed, which can vary between staff and by situation.  For some forensic carers, issues around confidentiality had become a significant barrier to them providing support for their relative:

It is very distressing to see someone who you care about who you can see is suffering and in distress and that there is nothing you can… you know that you are actually being obstructed by the system to being able to help them in any way. (father)

What frustrated some forensic carers was that the notion of confidentiality could be used to close down any conversation that may be more nuanced, and to explore key concerns without actually breaching any confidence.  Some forensic carers feel that staff could do more to persuade, especially when the person is paranoid, that it might be beneficial to share more information with families.

Conversely, one forensic carer complained that impressions of her relative’s well-being she had passed onto staff, seemingly in confidence, had then been shared, subsequently placing her in a difficult position.