Catching the Bus

Yesterday we had a significant planning meeting for Julie (her CPA in the jargon, the meaning of which keeps eluding me).  We all sat round a table and talked about discharge, and even set a date for this.  We have all been here more or less before, but the difference is that now Julie actively wants discharge.  Unless it all starts breaking down again, she will spend half-term week at home, and come home for good the following week.

A cause for celebration, but inevitably there is a strong undercurrent of anxiety.  Will she cope?  Will we cope?  It was discussed openly at the meeting.  I was pleased with how open staff were, though sometimes they miss the most obvious reasons for anxiety.  I was uncomfortable saying too much, because I did not want to put words into Julie's mouth, and I didn't want to raise anxieties that weren't real for her.  But it was a huge relief to both of us to be reassured that there was a 24-hour phone number we could use in the event of a crisis.  Everyone round the table looked so astonished when we commented that we had no idea that this existed!  It's obvious to them, because they work there, but it's not obvious to the people using the service. No one has ever given me a leaflet or even a piece of paper with a crisis number on it and said, "Ring that if you need help."  The only number I have ever been given belongs to the clinic reception which only works Mon-Fri 9-5.

Part of the anxiety is that Julie has to move teams, from the hospital staff to the clinic-based staff.  There is some overlap: clinic staff have patiently attended all her CPA meetings this year, and her hospital consultant may stay involved for a while after discharge.  But it will still mean getting used to a different level of access.  Even with a 24-hour phone number, there is a big difference between getting help and support on demand from an entire hospital team, and waiting for a call-back from busy on-call staff.

The biggest practical shift will be moving from a system where Julie gets significant transport support to and from the hospital, to one where she is expected to get to clinic appointments by herself.  To say that our local bus service is rudimentary is an understatement - and it is currently earmarked to be removed altogether as part of the council budget cuts.  In any case, at the moment Julie is still too frightened by the noise to take a bus journey alone and has significant difficulties walking down a busy main road on her own.  Taxis are prohibitively expensive and can be unreliable, risking stranding a frightened teenager.   Last year, before hospital admission, I shuttled her to and from the clinic appointments myself, trying to juggle work and other commitments at the same time.  This year, not able to drive because of back problems, I won't be able to do this, and in any case I don't think I could handle the stress.  I need to talk to clinic staff to see if we can come up with some sensible solution.  But its disheartening that again, they can't see why this is such a problem for Julie.  In our previous contact with them, we regularly ran into problems where they scheduled several appointments a week, without any reference to how we were going to actually attend them.  Its much harder to contact the clinic staff, who are often busy, and don't return calls.

Still, I refuse to be disheartened.  The important thing is that Julie is almost home, and wants to be home.  Somehow, we will manage to overcome the difficulties.  It would just be such a shame if she ended up getting less treatment than she needs just because the local bus service had been discontinued.