For a few months now I’ve been a media volunteer with Mind, which means I’m on a database of people who are willing to be interviewed when a mental health related story comes up on the news. Basically it means I complain about the things I complain about anyway, only in front of a camera and/or microphone. I’ve also been involved in a campaign around cuts to the day centre I attend a few days a week, which has meant desperately trying to get press attention on mental health services.
I have done these things:
Interview on Channel 5 news: crisis care
Interview on Disability Now podcast (from 12 minutes in)
Interview on BBC news: mental health funding cuts
Pills & Policies blog on the Highgate Day Centre – I’m quoted and photographed (!) with a collaborative art project I organised at the centre’s open day in August
I also went to a crisis care conference organised by Mind, where they reviewed the last 5 years of crisis care campaigning and tried to determine priorities for the future. The day started gloomily: everyone seemed to feel that, while people knew more about mental health, the financial situation was so bleak that there was little hope for change. But by the end, it was the stories of small local successes which dominated, like this programme in Cambridge which encouraged ward staff to wake patients with a cup of tea, instead of banging on the door and shouting, and changed the relationship between staff and service users so radically that restraint is now almost never used.
When I first started writing this, weeks ago, before everything fell apart again, it was going to be a purely positive post. It’s always stressful talking about private things publicly, but I like the people I get to work with when I do it, sometimes the questions I have to answer mean I think about my experiences in new ways, and sometimes it’s just funny seeing how they make the news. I also believe it would be hypocritical, given how much time I spend complaining about mental health services, not to take any opportunity I get to shout a bit louder about them.
Since this most recent crisis, though, I’ve had to pull out of some other commitments and rethink. I was due to take part in a training event at the Department of Health in mid-September, but was not long out of hospital. Preparing my presentation meant looking back over the last two years of crisis-recovery-relapse-repeat, and it was too painful. How could I suggest anything constructive when all I wanted to say was nothing helps. We are beyond your help. Give up ?
It is also not easy needing help from people you have publicly criticised. Anyone who worked with me at the St Pancras crisis house last year would know I was talking about them in the BBC interview. It’s one thing to criticise a system you believe you’re on the way out of; it’s very different to talk about something that is wrong with the care your life immediately depends on.
And it’s harder, sometimes, when you fight and find that nothing gets better: the immediate trigger for this crisis was finding out that my day centre will have its funding cut by half, and the changes will be in place by early December. There is so much talk from professionals about “service user involvement” and encouraging us to “use our voices.” But we have been involved. We have spoken so clearly about what would help us, why we need the centre the way it is. I have talked so much – on and off-record – about what it’s like when the things you need to cope are taken away. It’s hard to accept that sometimes, no matter how loudly you shout, nobody listens. It is easier to say nothing at all.