Tuesday, July 6th 2010

Case conference

They got me up early this morning so I could be breakfasted and at least made presentable ahead of my case conference meeting which was held in the conservatory. The purpose of the meeting was to identify and discuss what needed to be done to allow me to safely be cared for in my own home. In attendance were Debbie (my carer and acting as a representative of my care agency), Jane (my OT with Adult Services), Rachel (my social care manager), Helen (physiotherapist for St Michael’s Hospice) and Michelle (community liaison for St Michaels Hospice).

One of the concerns that everyone has is the whole issue of being able to safely transfer me and move me from room to room. A big part of the problem is that there is simply not enough space between the doorframe to my study and the stairlift track which encroaches about 8 inches into the doorway. We can just about get a glide about chair through the gap but these are quite narrow anyway. Unfortunately anything much wider is just not going to get through. One solution that we are looking at is moving my day room from the study to the second bedroom. This would offer a couple of advantages: 1) easier access through the door; a necessity for the larger wheelchairs and shower/commode chairs we are looking at; 2) a bigger area for carers to work in and for me to receive guests. If this were to work out we could then effectively do all the transfers in the bedroom using the gantry hoist. However at this stage we are still not certain that the chairs being looked at and be able to safely navigate the tight corner from the landing into the bedroom.

There was a lot of concern at the meeting over how safe it would be for me to have a bath at home because of my diminishing upper body strength. The bath lift I’ve got doesn’t recline backwards so I cannot depend on gravity to keep me in position. But even if it did a standard length bath is not long enough. They feel I would need to be held in a sling all the time I was in the bath and that would hardly be ideal or indeed even possible at the moment as I don’t have any ceiling track, and although they were telling me a few days ago that I could have it I’m now detecting a reluctance on their part to go down this route on the grounds of safety. My OT is going to investigate further to see what equipment is available although at this point it doesn’t seem very promising. Even more depressing they are now calling for a rethink on the bathroom in the extension. Originally the plans were drawn up with a wet room but because I like my bath so much as it soothes my muscles I asked if I could have a bath instead. Nobody told me that I couldn’t so I assumed that it was okay. Now however I’m being told that it’s not safe. We haven’t yet reached a decision and my OT is going to look into it further. But the catch is this; even if they locate a suitable specialist bath which may run into many thousands of pounds, I would have to fund it myself as the council would say that a shower chair would meet my needs. Also, these things are not on approval so if it didn’t work out I couldn’t take it back. On top of that there is still the possibility that months down the line the disease would once again moved the goalposts and I would not safely be able to use it. This is so frustrating for me as having a morning soak is one of the few luxuries left me.

We discussed the recent wheelchair assessment I’ve had and the different types of chair being offered. As with many things in life it could end up being a bit of a compromise. On one hand there is a chair that will fold up, has a high reclining back and neck support with some padding in the seat but may not be good for prolonged all day use, whilst on the other hand there is a chair that looks much more comfortable but is not foldable so would have to be assembled upstairs.

Some good news… I’m being told that the builders should be starting work on my extension in the next week or so. We were held up by Thames Water who needed to supply a document that would allow construction near their services.

I’ve now been given a provisional discharge date which will be between 20th and 21st of July. However, this is not set in stone and will be subject to getting everything done in time.

Mark