Last night I went to a meeting with parents, OxFSN and Bill Mumford. Bill (I think I can call him that) attended in his new role leading the Winterbourne concordat jobby. He’s only been in post a couple of weeks so it was cheering that he pitched up on a miserable evening to hang out for a couple of hours.
After talking a bit about his background and plans to reduce the number of people in assessment and treatment units over the next 18 months there were questions, (robust) critical comment and reflections. Lack of (and short term) funding, inappropriate ‘placements’, cuts, lack of knowledge and understanding, misuse/misunderstanding of the Mental Capacity Act/Court of Protection, lack of information, fear… and much more.
Harrowing tales were told. Abuse, unexplained bruising, excluded parents, distances of 200 miles to visit units, previously happy, person centred experiences crushed by withdrawal of funding, patients told they had to earn tokens before they’d be allowed out (or across the hallway to a different part of the unit) and experiments (‘experiments’ were left unexplained.. no one went there). Pretty much everyone whose children had experienced inpatient care had a tale to tell. And there was a historical context underlying the discussion. This wasn’t new. Creative ideas had been floated in the past and people present had heard a lot of it before. Without change.
At the same time, there was an energy, commitment and passion for change. A sense of collectivity and shared experiences. OxFSN have been doing comprehensive work around what would help parents when their children enter inpatient care. They’ve spoken to parents, carers and various key figures to explore how to support and empower. An uplifting force was apparent. A peer support network of trained advocates was floated. Families helping families. Alongside existing ‘services’.
I sat next to Pat. Pat is in her 80s. Her son, J, had two spells in STATT, one ten years ago. ‘Before it deteriorated’. We shared stories. She’d not spoken to anyone whose child had been in there, despite J’s long stay. Pat was a real character. Her freshness, humour and no nonsense engagement was a tonic. She’d dealt with the system for 56 years and bristled with energy and forthright thinking. She made me laugh out loud a few times during the meeting. At the beginning, we were asked to sign a sheet and add our email addresses. Pat didn’t do email. She had an email address but would “never, ever use it”. Her home computer took forever to start and she refused to use it. She wrote her phone number. During the discussion, people asked if they could get a copy of the scoping document outlining the work OxFSN were doing. Yes, it could be emailed round easily.
“I don’t use email” said Pat, repeated firmly. “I’ll need it delivered.”
At the end of the meeting, there was a rounding up of the discussion and a ‘last thoughts round’. Bill raised social media at this point and said how important he’d found twitter and blogs written by parents, including this one. It was an effective way of understanding individual experience.
“I’m going to get an ipad.” announced Pat, as we started to leave. “My husband said he’d get me one. I’m going to get one. And, when I work out how to use it, I’m going read your blog, Sara.”
“Er, there’s a few swears in it,” I said. “Especially to do with STATT…”
“Swears? To do with STATT? I can deal with swears about STATT,” she replied, a twinklet in her eye.
So a collective ‘good on yer’ for us parents, OxFSN and Bill Mumford for a productive and open discussion. And here’s to change. Maybe it’s more straightforward in some ways than we anticipate.