Feeling stigmatised

The impact of stigma was highlighted as problematic by 29% of survey respondents, and some said this was the biggest challenge they faced.  Those we interviewed reported losing friends and becoming isolated themselves in their own communities:

I hid myself away from people for months and months and months, just because I was terrified of going out and seeing anyone and being faced with any questions. (sister)

All members of the family can be affected, as this case shows:

The hardest time was… and it was so hard for her (his sister), I really did feel for her, I actually felt like moving and it was when she was in secondary school and having to go through all that of people talking [about her brother]. (mother)

Family members can become defined in terms of their relationship with a stigmatised relative, rather than being seen for themselves, in their own right:

 It was all about his brother and the fact that his brother had been you know admitted to the State Hospital and his brother was this and his brother was that.  So he walks into situations not as himself but as [brother’s name]. (father)

Stigma about dangerous madness and secure services is a societal phenomenon, and can cut both ways for carers, who can fear for the safety of their relative.  Such is the reputation of some institutions that this fear extends to concerns about danger from other patients and staff.  Carers might feel stigma in their contact with services.  The process of becoming an authorised visitor and navigating the security regimes of forensic institutions can all have a negative impact upon carers:

You’d to fill in all this documentation and send it off before you’re accepted as a visitor, so again that was quite traumatic, you actually feel you’re like a criminal to fill in all this like… we’re not bad people … Very hostile and very much… I don’t know, I just felt… what’s the word I could use, I just felt that I was like some sort of a criminal or I was associated with a criminal.  (sister)

Stigmatised identities within the system can be a barrier to fully realising a philosophy of recovery, grounded in encouragement and promotion of autonomy and responsibility.  One forensic carer commented how staff might have too low expectations of individual patients, reporting that her son’s aspirations to undertake an undergraduate course were ridiculed.  This reflected how such staff attitudes play into processes of institutionalisation and unfulfilled potential, as another carer commented:

The reaction of the hospital staff was to hand him a bucket and mop and tell him to go and clean the floors and he was never going to amount to anything and why did he think anybody would ever employ him. (father)

Carers were anxious that even successfully coming through forensic mental health services and out again into the community will not be the end of this stigma, for them and their relative:

It’s not gonna be done and dusted. It gonna be sitting there as a big flag, saying THIS IS WHAT YOU DONE… it’s just the general public at large who feel they’re entitled to give vent to their feelings, you know. So that’s always been a concern and a worry over the years as well. (sister)

That these are not ungrounded fears is evidenced in the following experience:

We started to realise that you can put a person into the community but it doesn’t mean the community will accept them, so he spent a lot more time on his own. A couple of times when he went out into town he met quite severe reactions from people who had known him in the past and threatened him, so he stopped going out this sort of thing.  So he became, in many ways, a lot more isolated. (father)

The impact of such stigma and prejudice also intersects with levels of felt support, and the family in this case questioned whether the appropriate level of support was in place:  ‘he was almost not returning to the community but getting dumped in the community’.  On a more mundane level, but still nonetheless distressing, ex-patients’ attempts at rehabilitation, such as enrolling for college, can be accompanied by their previous circumstances being made known to peers on the grounds of health and safety.  Similarly, individuals can experience direct discrimination such as one carer reporting her son was refused entry onto a housing list.

Some carers reported feeling no stigma and talked about living in very supportive communities.  Similarly, one carer reported that her relative was not believed when telling people he had been ‘in Carstairs’, as if this was an unbelievable fact.  Some reported that, as much as they may have lost the support of some friends and neighbours, others had rallied round, such that people were able to know who their true friends were.