Passing out Parade

Yesterday morning was second Case Conference. The Liaison Nurse at Pinders had arranged for our Social Worker to be at this meeting (we didn't know we had a Social Worker, no-one told us, apparently the Liaison Nurse has been speaking to her for a while about our case - HELLO - we're here too!!), along with the District Nurse, who we did know was coming. Both very nice and we're pleased we've met them. Particularly the District Nurse, she was standing for no airy fairy stuff from Mark's consultant or the Liaison Nurse (who is not the easiest person to deal with despite the title of Liaison). Also in the meeting was Marks Physio and OT.

Purpose of the meeting - to get rid of Mark now as soon as possible - irrespective of whether he is ready or not. Our original discharge date was Aug 31st, 2 weeks from yesterday. Up to this point Mark has had no home visits despite the fact we were told when we first got there he would start coming home for weekend leave after 8 weeks. At the last case conference we were told he would get one or two weekends home before discharge, now we're being told he'll get a big fat ZERO. The reason - there's no money in the budget for weekend care! After Mark vociferously stating how disappointed he was over this and explaining how important it was to him to have at least one home visit to see how we all manage and saying we would even compromise and have a mid week visit, they all took a deep breath and agreed to work towards a home visit for Aug 30/31 and move the discharge date to Sept 7th.

Mentally and emotionally Mark is ready to come home and I'm ready to move on to the next stage, driving an hour and back to the hospital every day and spending a minimum of 5 hours there each time is beginning to wear me down. However we discussed it before the meeting and we both agree that medically we feel he's not ready. They still haven't got his pain and spasm medication stable but more worrying his dangerously increasing oedema. This has been getting steadily worse while he's had the pressure sore because he couldn't wear his compression stockings. He has severe fluid retention and swelling all the way up to his hips. He mentions it every time he sees a doctor, every time he sees the consultant and so far all they've tried is a mild diuretic (diuretics make you pee a lot and should reduce the fluid), they've not worked AT ALL. It's really hampering his Physio because it's getting harder and harder to bend his legs. The District Nurse came into her own here and had a 'serious' chat with the Consultant, asking why they hadn't tried this or that. There was a modicum of embarrassment and defensiveness on the side of the Consultant and Liaison Nurse but happily they agreed to be more aggressive in treating it and trying to get it to a minimum. As if the whole situation isn't hard enough, everything is a sodding battle. Mark's sick note ran out, that suspends his benefits claim and it's taken us 2 weeks to get another after asking everyday for it. Anyway we now have the record for the longest case conference ever!! We came out looking dazed and weary carrying the Social Services 20 page assessment form to consider. Social Worker will come again next week with 2 careers to do a moving and handling assessment - if they're not happy the home leave won't go ahead and she will also assess Mark and fill in the form after we've filled in whatever we can.

Mad Mary - benefits woman. As if we hadn't had enough for one day we now had the DLA form to fill in, another 30 odd pages of inane questions (hospital told us she would be there Tuesday but they got it wrong, it was Wednesday). That took over an hour and after reading all the help guides online and understanding how much detail you need to go into in these forms, I don't have a good feeling about getting the higher rate that Mark should get for his level of injury with what she's put down. As if just trying to manage to get on with our new life isn't enough to contend with, we're drowning under the weight of paperwork. Does it sound like we're having fun yet?????? Came home and had a few big glasses of wine with my 'shoulder to cry on' Janet, and now today is another day - hopefully a calm one. Love you all for all the support you give us x