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Returning to Belfast after 8 months of intensive mental health treatment in London and having been told she needed to be assessed within 48 hours, Joanna instead found herself at the bottom of a long waiting list for help. Struggling without support and recognising her rights were not being met, Joanna recalls, ‘One day I remembered being told about the Belfast Mental Health Rights Group (BMHRG). I knew they were involved in campaigning and human rights, and I thought I should get in contact.’ Joanna emailed PPR and met with the BMHRG for the first time shortly after.
Describing her experiences in trying to access appropriate support from NHS services, Joanna says ‘Any A&E or mental health team I attended, I was told ‘we hear what you are saying, but we’re going to do it our own way’. I would explain that I could not keep myself safe, that I was at immediate risk, and be told ‘I’ll see you next week’. Having become accustomed to her thoughts about her treatment being sidelined, Joanna says of her first meeting with the BMHRG, ‘I was really surprised to be asked for my opinions on the issues we were discussing!’
Joanna’s work with PPR and the Belfast Mental Health Rights Group
‘I realised I was being listened to in the group, that they knew what I’d gone through because they’d had similar experiences. It made me want to come back the next week. Everyone has had problems with the health system and everyone understands – it’s a big emotional support. Knowing that there is someone who actually needs you, needs your opinion and contribution really helps me to keep safe, to keep going. It gives me a sense of self-worth.’
Talking about her work with the BMHRG, Joanna says ‘the campaigns don’t have to be worldwide, it might just be a specific issue in one Trust. Sometimes we’re trying to change really small things, but they’re the things that matter’. One of the key campaigns of the BMHRG has been the ‘Card Before You Leave’ (CBYL) scheme, which is intended to ensure that any patient presenting to A&E with mental health issues and considered safe enough to go home, is given a written appointment for a full psychiatric assessment within 24 hours. The scheme was designed by and campaigned for by the BMHRG, and eventually implemented by the Trust. Having the scheme implemented was not a straightforward task for the Group: describing the difficulties, Joanna says ‘It felt like the health board were trying to push us out. It’s the same problem of ‘we hear you but we’re going to do our own thing’. It’s a common feeling within the group but we’re still fighting, we’re not giving up’.
When things went wrong
Joanna personally experienced failings by the Trust to correctly implement the CBYL scheme. ‘I went to A&E, having a really bad day and explained that I wasn’t at immediate risk but felt I needed to see someone very soon. They gave me the CBYL but there was no space for an appointment, it simply stated that someone would contact me for an assessment’. Joanna wasn’t contacted and upon calling the number on the card, it transpired that no referral had been made following her presentation at A&E. 3 days later she received a call, but only to signpost her to services in the voluntary sector, not to offer an appointment. ‘I pointed out that the CBYL was meant to offer an appointment within 24 hours, not a phone call within 72 hours. A few minutes later I got a phone call back and was offered an appointment for less than an hour later, which would have been impossible for me to attend. I was told that they would not be able to offer me an appointment at a different time’. Speaking from the perspective of the BMHRG, Joanna adds, ‘that’s an issue because we say the appointment must be at a convenient time and place for the client’.
Previously, Joanna would have been left distressed and in a worsening state by the failure of health services to respond to her request for help. However, her experiences with the BMHRG have made a significant impact on her reaction to such situations. ‘I got up again, from feeling really down because I knew I needed to campaign, things needed to change. I needed to speak to the group and show them the card wasn’t being implemented correctly. In the past, whenever I was in A&E, I felt like I had no say, no power. Now I’m on the other side, if I’m not being treated right I have the confidence to go and talk to someone about what needs to change. In developing the CBYL, now we go and say to A&E what they need to do, whereas in the past they would be telling me what to do even if it didn’t work. We’re changing the power dynamics.’
Joanna did not only raise the problems she encountered with the BMHRG. Speaking confidently, as if she were describing a meeting with a friend, an equal; Joanna recalls approaching the Manager responsible for the implementation of the CBYL scheme at the Trust she was let down by to discuss her recent experience. ‘He said he was going to do whatever he could within his own Trust. Speaking to him was a really positive experience; I felt that he listened and wanted to work with us’. Growing further in confidence, she gave an address to the audience on behalf of the BMHRG at the Mental Health Services at Breaking Point event in 2012, ‘the first event where I personally stood up’.
Getting others involved
Recently, the BMHRG has been engaging in an outreach programme, helping others to learn how to campaign effectively for positive change. Joanna says, ‘We go to the Niamh Louise Foundation every two weeks or so to speak to the young people about their rights and what they can campaign about. It’s just the beginning of the group at the moment and we’re training them to use the same approach as us, to help them start up their own campaigning. We can talk about our path and give other groups some ideas, show them that it’s possible. It’s knowing that we can go there and support other people to go through what we’ve already gone through that makes all the difference; the beginnings are always the hardest’.