A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.
The choice agenda in practice. Kind of hilarious.
The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.
The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.
After feeling strangely heartened by the reminder that LB had rights, I began to reflect on what this meant in practice. Who would/should safeguard those rights? He said no to an advocate when he was sectioned, but he doesn’t really know what an advocate is. He’s been in the unit for four days now with rotating staff. What they know about LB you could write on a postage stamp. We’ve hung out with the dude for 18 years and loved the socks off him. If anyone has his best interests at heart, I’d say we probably coast it. I get the arguments about the constraints and limitations parents (particularly mothers ‘cough cough’) can place on disabled kids through an overly developed sense of protection. But I also know how vulnerable these dudes are.
We rang the unit at lunchtime to see how he was. The phone was passed straight to LB. I just wanted to know if he was OK and having a grunt from him wasn’t really going to answer that. I had a quick chat (not really the right word for a largely one-sided conversation) and asked him to pass the phone back to the nurse.
“We’ll visit this afternoon around 4ish if that’s OK. His sister will be back from university. We’ll ring before we come.”
Later that afternoon I rang. The phone was dead. Oh. Luckily, I’d been given a second unofficial number by someone who recognised how distressing this was for families. That number was eventually answered and with some resistance (all of a sudden bedtime routines happened straight after dinner thereby interfering with visiting hours), we were able to visit.
LB was in his room and seemed pleased with his cakes and bus magazines. We hung out for a bit, and, when we left saw some of the other patients. As usual, they were chilled and said hello.
We haven’t seen any other visitors all week. Despite the extensive visiting hours pinned on the front door, there are no visitor type concessions, like a vending machine, or waiting area. I don’t know if there is an assumption that people won’t visit or that visitors will cause disruption. Or maybe the other patients have exercised their rights and refused visitors. From the interactions I’ve had with them over the last few days, I find that unlikely. It seems desperately sad if there ain’t any. But I can kind of see how it could happen.