My Twitter presence is sporadic. Sometimes I just find it overwhelmingly depressing. The NHS crisis, the consequences of the lack of mental health care – and that’s just the tiny sliver of news that I see. I follow lots of runners too and that helps but sometimes I just disappear for a bit.
Yesterday there was a tweet that caused a bit of a furore. I’ll confess that I jumped on the bandwagon (although the bandwagon bit was unintentional). So the original tweet by @uk_mental read:
“#ot4pd, @tewvconf When are we going to stop listening to the patients and service users. Let’s start relying on our own expertise, experience in this field. Unlike a shopper the customer is not always right. Nor is the patient”
The hashtag was referring to a conference about Occupational Therapy for Personality Disorder that was taking place as part of NHS Tees, Esk and the Wear. I was particularly interested as I am under the care of an OT, for PD in TEWV. I read it as a professional, attending the conference, saying that patients shouldn’t be listened to and was absolutely horrified…
… I can also perhaps *don’t hate me!* see what she means. Gulp.
I can explain. Right, so when I was a teacher, you’d better believe that the world and his wife had an opinion on teaching and where we were going wrong. Parents evenings were littered with completely impractical solutions to non-problems. The answers so easy for them to see yet so elusive, apparently, to those of us who were trained and, y’know, actually spent all days in classrooms. No, no – they knew best. This was best typified with…pupil voice. Oh dear god. Pupil voice. A well meaning idea that forgets that children are, actually, children! Maybe I’d be struggling with a particular group and, desperate to reach them, I’d design a pupil voice questionnaire. My hope would be that I’d find a way to engage the reluctant, to reach them. Ha ha ha. Good one. I can pretty much tell you how every pupil voice questionnaire goes. These would be the usual responses:
- No work from textbooks. Right. No idea how I’m supposed to do that one when I’m not allowed to get them to copy from the board etc
- More experiments! There are a limited number of experiments in any topic. Considerations such a cost, practicality, time, safety. I’d squeeze in an experiment whenever I could yet still the request would come. What they meant was ‘I’d like more time to prat about with my mates in class’. Uh huh.
- Be more strict
- Be less strict
- Throw out naughty kids. Argh!!! I’m not actually allowed to do that. It’s called the whole school behaviour policy. Yes I think it’s crap too but here we are.
Anyway you get the idea. A bit like @uk_mental health says; sometimes the people using the services don’t actually have the big picture, the benefit of training and experience, the evidence of research. So, if (and it’s a big if) that’s what she was saying then I can kinda see it…
… to say ‘stop listening’? No. Surely that would be dangerous?! A patient presents with physical illness and you don’t heed a word they say and try and figure out what’s best for them? That’d be mad. Well, even worse in mental health. Patients who fear not being believed, who are so used to not being listened to that they communicate with anger, shouting, starving, cutting or, perhaps, don’t communicate at all should absolutely be listened to.
Here’s an example from my own experience. The DBT therapist suggests that I try going for a run (I’m obese and seriously depressed). I cry. I am angry and frustrated. I am angry that my therapist is making suggestions that are ridiculous. I struggle to get out of bed, to leave the house. Run?! I feel invalidated. My depression mustn’t be that bad if she thinks I can go for a run. I feel so wretched and useless and unheard. All I can do is cry. The therapist knows there’s a great deal of evidence about running having positive effects on mental health. She knows best. But she doesn’t. She sees me as wilful because I refuse to entertain the idea. It’s like I don’t even want to be better, right? Wrong, wrong, wrong. I wished I could be a person who could go for a run, but I just couldn’t.
Well, we know how that one turned out. With a lot of time and a lot of talking (and no more talk of running) somehow, one day, I did go out for a ‘run’ (more walk than anything but that’s unimportant). Running changed my life. And, even although it changed it far more than the evidence suggested, that therapist was still wrong. When, knowing the evidence, she suggested that I go for a run she did not know what was best for me. What I actually needed was comfort, support, patience and, more than anything, to be listened to. That got me well enough to consider putting my trainers on.
I hope to run my first marathon this year. I wasn’t wilful. I was ill, very weak and vulnerable. I needed to be listened to but I also needed ideas to try, things that would push me but that were achievable. This is why I (@madmumruns) replied to the tweet:
I hope my opinions here aren’t dismissed because I’m a service user/patient/person with mental health difficulties. Importantly though, I also hope that it is recognised that my thoughts are no more valid than the next patient purely because I am articulate.
I dislike Us and Them thinking when we’re talking about what works in mental health treatment. I’d much prefer to think of us as people working towards a common goal. Admittedly that goal is going to mean more to me than the professional, it is after all my life but surely we want the same thing? Don’t we? Or am I just fantastically optimistic…and depressed. Don’t listen to me.
(Oh and I did try, wherever possible, to incorporate what my pupils fed back to me)