David Gillon

My sister and I sat through a 4 hour online seminar on Saturday, on what to do to prep claiming Continuing Healthcare funding for my mother (so the NHS pays for her care home place rather than the family). The presenter was a lawyer, backed by a MH nurse turned patient advocate. They were obviously trying to drum up work for their little firm ("The Lawyer and The Nurse"), but in a "we're here if you decide you need us" way, not "you absolutely need us". Very useful.

There's a daunting amount of stuff to do before the Decision Support Tool assessment on the 22nd, and we'll likely need to ask for a postponement in order to get stuff like copies of my mother's hospital notes and understand the relevant bits - we'd hoped we could rely on her discharge notes, but there are a couple of things missing because the in-hospital reaction was "well, that's weird, not sure why it's happening, not a lot we can do", which translated to not mentioning it in the discharge notes at all. *headdesk*

I did get to ask during the Q&A about my worry that the sheer extent of the crossovers between symptoms in different areas would be missed if the nurse-assessor wasn't familiar with my mother's rare issues, and was told we absolutely needed to emphasise every crossover in writing, not assume they would recognise them, and that it would be useful to get input from my mother's consultant.

We've actually done this before with my dad, but his case was so obvious that we didn't really have to fight to get it, though there was one attempt to take it away where I now know I happened to say the right thing to get it for him completely by accident.