I have a brilliant OT, whom I’m seeing in a few weeks at the National Neuro hospital - we go back to 2011 when she first wrote to the wheelchair clinic about my clinical need for leg elevation. I’ve been going to that hospital since I moved down in 2006 and in recent years have had even more contact so that I feel it’s my bloody second home!
I don’t have a local authority care plan as I’m self funding, and to be honest it’s a waste of council resources to get one.
What do you mean exactly about .well documented with NHS care/management plans’ etc.,.all ready?
You’ve jigged me into getting my OT to write down a big list of things like leg elevation, manipulation, regular appliance ice packs (pain relief), turning, toileting. I can just do her a list and she can write it up.
My community physiotherapist will write a letter, my Neuro will. My Pain consultant has just retired and I’m discharged since I just checked in with him each year as we’ve been seeing each other for years and, in my case, my Pain is unresponsive to meds, surgical spinal intervention. I have regular tibial nerve stimulation for bladder and a bowel nurse, have a Palliative Care consultant at Marie Curie and he can write. I think I’m well covered here, it’s just getting them all to write so I may as well start now.
I have severe vertigo and that’s driving me mad as it’s so incapacitating.
Ive been diagnosed since 1987, with a central nervous system full of lesions and I’ve got cognitive difficulties which aren’t always apparent. But I’m struggling like mad to be actively involved in DPAC and a UC campaign which involves lots of meetings,writing of motions for meetings and conference. I was SO on top of the briefings on this grotesque benefit and within a few weeks now of noting, following on from us singing non-Xmas UC carols outside of a north London job centre, then shopping centre, it’s all leaked out of my brain…
I should be quite calm about the PIP and ESA assessments, I’m prepared compared to most others, but I find it induces such awful misery and anxiety.
I will be amazed and terrified if I have to go to an assessment, I never had to. But I know PIP insists in even the most severe. I can’t insist on them visiting me at home, because I won’t be at home, I’ll be renting whilst my ground floor is made completely disabled accessible…
Anyway, I think I’m just having the normal post assessment feeling of doom!!