thanks Kathy, I am not holding my breath for results of Franks assessment held in January............, but will live to fight another day by appealing immediately. pessimist? moi?

x

It is certainly worth reapplying straight away as PSP is such a downhill thing and one infection more can be the final straw as was the case with mum, They have realised that she has no quality of life left other than eating (which is precarious now) and visitors and they were able to mark up the points which gave her enough to qualify. Having said that it was 2 weeks ago yesterday that it was approved and confirmed by telephoone and still no paperwork let alone payments as yet.The paperwork when we didn't qualify last time never arrived and when I emailed them they apologised and said they had been snowed under but it came by return of post. In mum's case when she actually quaified it was confirmed the next day by phone as the panel meet every weds and we were reassessed on a Tuesday. SO I would chase it up and reapply as it doesn't look promising. Incidently I sent a new concise descriptor Adobe doc from the PSPa before the reassessment to them in advance as where I live (Medway) there is very little awareness of PSP. If you want to email me on dianne_hemming@hotmail.co.uk I can send it to you to forward.in advance of your next assessment. I felt that the assessors tried harder to accommodate us with the knowledge from this.They also realised that mum could not answer their questions so apart from a quick hello to judge her reactions they took me to another room with the nurse to evidence mum's issues. This prevented the issue we had last time of mum actually heading downhill fast after their visit as she had put on her best performance which knocked her for six and she had her first bedsore and another UTI the very next day. Incidently factors like fragile skin, not being able to communicate their needs, not knowing whether it is night or day anymore (due to sleeping so much), recurrent UTIs/CIs, lack of desire to join in /go out, any depression, having to be hoisted about as they can't stand anymore-these all add to the points. Don't let them think Frank is having 'fun' being like this.
Dianne

Yes as you say it is not for end of life that's why it's called continuous health care not end of life care.
I had quite an argument with my district nurse about this and I insisted she did an assessment and second time around we were awarded it.
You just have to dig your heels in and fight.
It has made such a difference to me as a carer just a shame I didn't have it sooner when I needed it.
I have two carers four times a day and a night sit twice a week which when you think I still have the lions share of the caring but it is so helpful having the help I have.
We shouldn't have to fight and push for what our loved ones need and should have ,god knows we rare stressed enough as it is but if that's what it takes!!!!!!!!