Although most service users (n = 19) reported being encouraged to seek help by their immediate social networks (friends, family members and partners), nine had also experienced unhelpful responses ranging from not recognizing or minimising the severity of illness to alarming or critical responses. One third of carers also described unhelpful responses from others in their social network when they had tried to instigate help-seeking. These had delayed or discouraged contact with mental health services.
"My girlfriend at the time had been carrying all these leaflets about bipolar disorder and stuff like that erm and actually she didn't help in the slightest, she was like 'they will probably section [compulsorily detain] you if they diagnose you with a mental health issue'." (Service user; male, 24, White British)
"My mother would often get very irritated and say 'what do you want us to do - put her in a mental asylum?' like that was the most horrible thing one could say. [...] My father used to say 'oh let her go out into the world, she'll soon be put in her place or something...'" (Carer; sister, 33, White British) (see also Additional File
1, 4.1).
Prior to their first contact with mental health services, 17 service users described being in contact with one or more community organisation. These included religious organisations, employment services, universities and colleges and youth and leisure groups.
Nine respondents reported that their difficulties had initially gone unnoticed or were ignored by community group staff.
"I was talking to myself a lot and I was having...and I was laughing to myself and smiling to myself and joking to myself and he [my priest]
sort of realised that there was something not right. But he used to try and avoid me which wasn't very good." (Service user; female, 37, Black Caribbean) (see also Additional File
1, 4.2 and 4.3)
Service users had been reluctant to approach community staff. Six of the eight who were in education said that they had not thought to approach their tutors for help, as they perceived these relationships to be distant, impersonal and inappropriate for discussing mental health difficulties. Similar concerns were described by two others about employers.
"I wasn't really sure who to go to, to be honest with you. When you are at university it feels like people are more occupied with the marks you are getting than how you are doing mentally. It's difficult to cope sometimes and it's difficult to know who to talk to and ask for help." (Service user; female, 25, Mixed Race)
"Because I think mental health in a working environment or any kind of medical issue in a working environment that has to do with your head, they would rather get rid of you, rather than tell you to go and get help." (Service user; male, 26, Mixed Race) (see also Additional File
1, 4.4)
Positive responses from community organisations were also reported. For six service users, encouragement from non-health community organisations led to referrals to mental health services either directly or via a GP. The involved workers were the respective participants' employer, son's nursery teacher, hostel support worker, university counsellor, youth worker and prison officer. Three more service users described receiving advice from community staff to seek help but not acting on it. Initial contact with mental health services was eventually instigated in these cases by family members or emergency services.
"And he [employer] suggested I talk to my priest, but it was just like, at that time I suspect I was a little bit beyond reach of anyone who didn't really know what they're doing." (Service user; male, 24, White British)
Seven carers discussed their family member having been in regular contact with occupational, educational or religious community groups prior to contact with mental health services. In three cases, schools and occupational health had noticed a deterioration of functioning but this had not led to a referral to mental health services. In four cases the community organizations had not instigated help-seeking or raised any concerns. However, two carers whose family members were in contact with church youth groups perceived their support to have been valuable, even though they had not advocated help-seeking.
"Their [church] response was they were praying for him and encouraged him to come. Just spoke to him. There is a youth group within the church and I think really that was his saving grace, that gave him insight. Because when he got sectioned [compulsorily detained] after that he continued to go to the church and today he is a strong man of the Lord. So I really do believe that that has pulled him through." (Carer; mother, 51, Black Caribbean).