Good things have been happening this week. I’m going to tell you all about them later. Right now I need to write about some less good things, because they’re haunting my headspace and that’s not very helpful.
As you know, I am the parent of a CAMHS user (Children and Adolescent Mental Health Services). Long term readers may also know that I am on the Patient Panel for my local paper. We are a body of volunteers with all kinds of expertise in all kinds of areas to do with local health and well-being. We try to bridge the gap between what’s going on in the NHS and what’s going on for patients locally.
My expertise is getting up in the faces of the powers that be, swearing violently in meetings and listening to patients about what matters to them. I can also talk about vaginas without panicking. This comes in handy more times than you might expect.
This week there was a meeting advertised to users of CAMHS and their families/carers. I can’t remember how it came to my attention now. PPI events (Patient and Public Involvement) are, by and large a joke. They are extremely poorly advertised to people who might want to attend, take place at times that are inconvenient to anyone with an actual, real life, and usually involve you having to register in some way so that some kind of filtering can happen. They will tell you that it is to do with health and safety and numbers of people allowed in a room at any given time. This is only partially true. Generally there is some kind of overarching agenda which has very little to do with patients, and everything to do with box ticking and making sure that whatever projects are in the works comply with the need to engage with patients.
I sound cynical. I am. I have attended more of these meetings in the last five years than any person wanting to cling on to their sanity should. You’d think I’d have learned by now. The issue of course, is that if you want to talk to anyone within the system at all, you have to show that you have at least tried to follow their labyrinthine and hierarchical processes so that when you finally lose patience you can point to the mile wide path of good intentioned meetings you have attended and letters you have written behind you.
I decided to go to this meeting. It was billed as a chance for families and ‘service users’ (or people as I like to call them) to give feedback. For once I had nice things to say, so I thought I’d go in the hope that I wasn’t the only one, and because it’s just as important to give good feedback as it is to give bad. I also went on behalf of several CAMHS families who couldn’t go, because of course, it was scheduled to start at 5.00 p.m. on a work day.
I am sorry to say that it lived up to my very low expectations, and at times went down from there. I would say that there were about 20/25 of us there in all, alongside a significant staff presence. The agenda was pre-determined by the meeting co-ordinator who wanted us to focus on four key areas that her team were interested in. We were told that if we wanted to share our feedback/concerns, we could write on the table cloths (I don’t even), or on post it notes which they would collate after the meeting. We were told that there might be some time to feed back after we had done the exercises they had planned around the four areas. There wasn’t.
It was the most despairing, unhappy meeting I’ve sat through in the last five years of advocacy and campaigning work in the NHS. There was literally no hope I could detect that anything would get better or anything would be done. The saddest thing was, despite that, people were trying. They were tired, angry, tearful and desperate, but they were trying so hard to do what was right, and it was absolutely heart breaking.
It was one of the cruellest meetings I’ve been to. Many of the families there were desperate to share their experiences, and they just kept getting shut down. There were two instances that really stuck out for me. Firstly when we were with a chap trying to elicit information about the journey of a child with ADHD/ASD. How cruel to ask about a journey most of the people in the room hadn’t even started yet.
Some of the women I heard, had been waiting 18 months, being passed from pillar to post. How are they supposed to know what that ‘journey’ looks like? The second incident involved the woman facilitating a discussion on what a new discharge form might look like, repeatedly talking over the woman who was in floods of tears about her experiences to ask her what she thought of the word ‘discharge’. I was so pissed off, in the end I just said: ‘I think it sounds like vaginas.’
I told you being able to say vagina in public without crumbling was a skill.
We were asked about digital content, which in itself is pretty farcical. Why ask a load of middle aged people how they think young people are going to get on with digital content, or what digital content they want to see? I’d put a pound to a penny that barely anyone in that room knew the difference between Snapchat and WhatsApp or that most people under the age of fifteen wouldn’t be seen dead with a Facebook account because it’s so last year. Leaving people like us in charge of edgy projects ends up with my daughter having to sit through sex education videos called Shagging in the Sheds, which bears about as much relation to modern day sexuality as a fucking penny farthing does to Bradley Wiggins’ bike.
Let me be clear. The really heart breaking thing about these meetings is that by and large the staff are doing the best they can, within the limited remit they can operate in. They were not being cruel on purpose. There is no money. There is not enough staff. There is not going to be any more money, or any more staff. I am in awe of the fact that the front line clinicians who were there, deal with this heartbreak day in, day out, and don’t go mad themselves. There were good people in that room, who were being forced by circumstances to do a hateful job. They can’t ask what’s really up, because they already know, and they can’t do anything other than what they’re already doing, and if they did do something, they’d probably lose their jobs, and what little they can do to make this intolerable situation less awful, would be taken away from them.
Nobody wins here.
I came out the meeting and sat in my car for a long, long time feeling grateful and guilty and angry and sad. I had hoped my experience might not be the exception to the rule. I had hoped I wasn’t the only one. It appears I am.
I have, in my limited capacity, fed back to the powers that be that I felt that the event could have been organised better. That’s not enough.
I have decided to set up a parents/families/carers support group online, for anyone who needs somewhere to share their experiences of CAMHS or other mental health services.
It will be confidential. It will not solve any problems, it will not inject cash into services or train staff, but it will be somewhere you can go where someone who cares will listen to you, who will, if only for a few, short moments, share the gigantic burden and responsibility of what caring for someone with mental health problems is like.
It will be about you, for you, because you need a break sometimes too.
I will put the virtual kettle on, break out the virtual Hobnobs, and lend a sympathetic ear. If you fancy joining me, I’ll let you know when I’m ready to open up the doors. It will be on Facebook, where all the middle aged people like me hang out. I’ll keep you posted.