Mr Grumpy

Sometimes (not often enough) I get to go back and work in my office, and share in the joys of office life.  One of the worst things that can happen in our office is that a light starts to fail: because to get it fixed you have to go down and talk to the maintenance man.

The maintenance man lives in a den at the bottom of the stairs and he is Mr Grumpy.  He is probably as sober as a judge, but he always looks as if he had just spent the night in the den hitting the whisky.  He has that kind of bruised look - and a temper to match.  I drew the short straw the other day and had to go down to report a light that had started flickering in the ladies' loo.  Whatever it was about this information that upset him, it triggered a furious tirade: that he had been sent the wrong light bulbs ("see, they have the wrong size pins, you can't fit these in those sockets", waving a multipack in my face), that someone (whose name meant nothing to me) never told him when they were going to send out a man in a van (and indeed why should they, I wondered?), and that he had never heard of this fault before (which was true enough, because here I was reporting it for the first time).  I didn't understand most of what he said, and this may not have mattered very much because for most of it he was not looking at me anyway.  When he had finished I smiled sweetly and went away, and two minutes later he was there with his stepladder and he fixed the light straight off with the light bulbs which he had just told me he did not have.

Mr Grumpy is a good maintenance man, but encounters with him are draining.  For customer service I would struggle to award him one out of ten.  This was not just a one-off encounter: I have always left his den wondering whether it wouldn't just be easier to fix the fault myself, and whether he would be happier if we all left him alone. There are people I work beside who would rather work in the dark than ask him to replace a light bulb.

I would not score our CAMHS team very highly on customer service either.  Their poor customer service means that we have real difficulties using their care in the best way for Julie.  They do not return phone calls, they do not reply to emails, they use arcane terminology, they fail to involve us, and repeatedly they insist that they know what is best for us.

I'm not going to go into the boring details of my latest struggle to make myself heard by the CAMHS team.  The only thing that really matters is that I had to make a complaint because they persisted in making changes to Julie's timetable without consulting me.  I was pretty reluctant to make a complaint, especially as Julie is now in the transition to adult services which are notoriously even more difficult to work with, but this issue was just too important to keep on ignoring.  I decided to write to the consultant in charge of the hospital unit, but not make a formal complaint, giving him a chance to respond and set things right.  I took extra care over this letter to make my feedback as positive as I could, keeping a light touch and trying to avoid one of those long complicated accusatory letters that are so easy to write and so hard to read.

In retrospect, his response was fairly predictable: I had confronted Mr Grumpy in his den.  The consultant was on the defensive, contradicted my version of events, failed to understand my complaint, blamed another service, and then continued to insist that the decision he had made about Julie's timetable was the "correct" decision (but correct for whom?).  The impression given was that he did not understand the principle of joint decision making, and had no idea why I could possibly think I had grounds for complaint.  It was also depressingly clear that he did not understand my life as a carer - he had no notion at all of the daily struggle that is caring for Julie, or of the impact of these decisions on us.  I put down the phone and wondered if after all we would be better off discharging Julie from hospital and trying to fix the fault ourselves.  It might be easier to live in the dark.

I'll be honest I was quite disappointed, and for a while I was angry.  I like this consultant: he seems fundamentally a good man, very unassuming, and most of his decisions, even though he makes them single-handedly, are in fact pretty sensible.  He has given Julie a much better foundation for recovery than she had before, and he has kept her on during this protracted transition into adult services, rather than pushing for discharge.  I do not wish to quarrel with him, and I am going to assume that I caught him on a bad day, that he is overworked, and that he does not really have time to read letters or think things through too carefully.

However, the reason why these things happen is because our CAMHS does not think of itself as a service run for its users. Julie and I are often not consulted about decisions which matter enormously to us - about medication, about timetabling, and about levels of support.  We are informed about decisions after they are taken.  Julie’s bemused assent to complex decisions whose consequences she does not understand is mistaken for informed consent.  At irregular intervals we are present at huge and unwieldy CPA meetings in which decisions are made but in which our voices are not prioritised.  After two and a half years, watching medical staff come and go, we are still largely observers of a process that affects us more than anyone else in the room.