One member of staff has asked me to be involved in something a little bit different from normal feedback. She's helping to run a training course for doctors who are soon to become CAMHS consultants, and she's asked me to record an interview - either video or audio - that she can use as material. She feels (and I can only agree), that staff endlessly talking about what the parents want is a poor substitute for just asking them. The theme of this bit of her course is "why involve the parents?". She's asked me to help because we've had such a long involvement with the hospital, and Julie has been treated both before and after the hospital made its changes.
It seems a great opportunity - a chance to speak directly from my experience to the one group of people who are likely to be involved in running CAMHS units for the next few decades. But I ran into problems as soon as I started trying to prepare what I wanted to say. For a start, that theme - why involve the parents? - immediately rang alarm bells. From a parents' perspective, it doesn't make sense. Do they honestly think we're not involved already? We are involved up to our necks; we're not just convenient suppliers of transport, and weekend care; we care deeply about the outcome, and every decision they make impacts on us. Even when we were not allowed on the ward, a small ghostly cohort of families arrived at the hospital doors every single evening to see their children. Our lives revolved around the hospital, whether or not they took any notice of us.
Take home leave, for example (the very term "leave" gives a lot away) - if the hospital grants or retracts home leave at its own convenience, without any consultation with the family, then it inadvertently leaves them wriggling like fish on a hook. They can't plan their lives, because at a moment's notice they might be expected to take on the care of a very sick child again. They can't take control, because anything could be cancelled at any time, on the whim of a doctor who doesn't know your child but doesn't want them to leave the hospital. I know this because it happened to me so many times last year that I lost count. Family occasions, outings, even my working life, were hostage to decisions made by people that didn't know me and to whom I couldn't speak directly. Their assessment of Julie, and often their own prejudices, were given priority - if they didn't think a theatre trip was an essential or desirable thing to do, then she didn't get her trip to the theatre. If they decided she should come home for the next week, then she came home, regardless of whether I could arrange time off work to care for her.
As you can probably imagine, there are a lot of emotions stirred in me when I think about my past relationship with the hospital. When I tried to write down some of my experiences at the hands of the hospital during Julie's first admission, I had to stop. It was all far too raw, far too painful; I can't even write about it here. I couldn't speak about it knowing it would be seen by a roomful of people who already work in CAMHS and yet who could still seriously consider that it might be alright to carry on with these policies.
The same attitude that considers that involving parents is an optional extra, comes from complete ignorance of the pain endured by families as a result of hospital policy. To take one example, because they had an obligation to inform parents about self-harm incidents, the hospital used to phone me up - at any time of day or night, depending on when staff happened to be free - to give me a report after every such incident had taken place. These reports, read baldly down the phone in a bored voice - "she tied a ligature round her neck" etc - were horrific. They could phone three or four times a week, without warning, when I was at work, or in a shop, or relaxing with friends, or about to go to sleep. We were miles away from Julie, and had no prospect of seeing her immediately. There was no support or reassurance given to us: they had fulfilled their statutory duty and would put the phone down. It was deeply traumatic, and astonishing that it never crossed anyone's mind to ask me how I felt about it.
I've worked hard to move away from the feelings of anger and helplessness that the hospital used to stir up in me. I know that it is not good for me to stay with these emotions, when I have to get on with the practical business of caring for Julie, which obviously involves working closely with the hospital. When I have to give feedback to the hospital that is critical I make every effort to remain calm and reasonable. There have been a lot of changes and they are now more interested in listening to what I have to say. But I'm not sure I'm quite ready yet to speak about the past, and I wonder if I am ready to make this recording. I suspect they have no idea of the degree of pain that they caused.
That's so very, very hard. It's a fantastic opportunity but - so hard. Could you have a talk to the member of staff who has asked you? In one way, yes, it is are you ready but in another it's 'are they ready to hear what you have to say?'
ReplyDeleteJ x
Yes, I think I might do that. It's hard not knowing who will be watching or listening to it, and how they will perceive it. As you say, it's knowing if they are sympathetic or not - when there's a strong chance that they're not!
DeleteWhat an awesome and terrifying opportunity! Having read your writings here, and learned a lot from them, I think you'd be great at it. Whether they're ready to hear what you have to say is another matter.
ReplyDeleteHope it goes well!!