thanks for the reply.
It’s really hard to know how my wife fairs against other MS sufferers as the others we know are still fairly well. Our MS nurse says she has 300 patients, none of whom have CHC, although she said only one applied and was rejected and never tried again. The nurse is quite negative about us applying, but she can be quite negative generally so we don’t take too much from that!
What we can’t assess ourselves is how dependent my wife is. I know I can’t leave her for more than 60-90 minutes on her own as she can’t empty her own catheter bag (I could put on a night bag which is what the MS nurse says to do). On a good day my wife can sit up straight in her chair, on a bad day she can go ‘floppy’, and is at danger of falling off her chair. She can’t right herself or position herself on her wheelchair or riser/recliner chair.
Like you she is fully cognitive. She still works (from home) 3 days a week; I stay at home all day to ensure she has water, food, etc. When eating she does sometimes choke and I have to help her, she coughs a lot whilst eating (and sneezes … is this common??). She has been referred to a swallowing expert to see what’s going on.
She can’t dress herself, transfers are all done by me with no help from her. She can’t turn herself in bed so I do this 2-3 times each night (she has a hospital airbed provided by NHS).
We don’t have any carers at the moment as I have given up work to be 100% carer.
MS Nurse says my wife just needs ‘social’ care and hence would not qualify for CHC, but I would argue that I certainly couldn’t leave the house during the day to go to work, and we only have a carer in for an hour or so through the day to provide ‘care’ - due to the risks to her health for me this is more than just care but there are nursing needs too.
It will be interesting to hear what the CHC assessors say once they engage with us.