Thank you so much to all who took the trouble to post a response yesterday. I feel so much better now I've found this wonderful site and have already made some calls to try to get some better help for my dad in his support for my mum.
I have also spent some time reading through the excellent posts concerning CFC and had no idea that there was such inconsistency and that securing this funding could be such a battle. In context, I have not exactly had my eye on the ball regarding funding and only applied for attendance allowance for mum a couple of months ago. She's probably been eligible for years.
So, regarding CFC, in my naivety I thought this was something only available to those in a nursing home, so wouldn't have even considered applying; but the community matron who the PSPA found for me, suggested the application and has filled in all the forms on Mum's behalf, so other than going through the form with her, I have had little involvement. I have not produced any documentation (not that I have any other than her initial diagnosis letter). The neurologist who made the diagnosis basically told me to go away and Google PSP and said that she wouldn't benefit from a follow up appointment. I don't think he expected her to be around very long.
She's a tough old bird is my mum. Even though she's 81, she isn't particularly 'ill'. Unfortunately, she is confined to a bed / chair, and cannot stand or even sit without being supported. She cannot even stand with a frame, she just falls to the side. She is semi-continent (if that's a word) in that she asks my dad to put her on the commode a dozen times an hour (sometimes she does something, usually she doesn't). She can't feed herself so my dad has to feed her mashed up food (though we are not experiencing choking). She can make a sentence of about 4 words; usually 'I need a wee'. Her eyes don't move and her vision is extremely limited. Basically, she is dependent on my poor dad for everything. My dad is in poor health himself and is awaiting a hernia operation, brought about my lugging my mum about.
What is worse is that my dad tries to play down my mum's symptoms - and his ability to cope - down to the authorities as he is scared they will force her into care; though her condition is pretty obvious to see.
So with apologies for the rambling post, is there any advice anyone can give me to prepare for the meeting? As I say, I have no evidence as such. I was hoping my mum's condition would speak for itself, but seemingly that is rarely the case.
Thank so much again, and sorry to be a pain and hog the forum. Hopefully, I'll be able to offer some advice back to others in the fullness of time.
Karen x
Written by
mattnkatsmum1
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I am unsure which meeting is going to take place. Is it the Social Worker's Needs and Risk Assessment, the initial Checklist done by the Care Commissioning Group (First stage), or the full Decision Support Tool (Second Stage)?
But going for the NHS side of the assessments until you get back and confirm which...
It takes a little work I'm afraid, but its worth the effort and it's not difficult.
Tip: Just read the relevant parts or you are likely to drown.
I would strongly advise that you complete the DST yourself over a few days adding as much as you can. Take the worst case scenarios. The scoring depends on that information so get it all down.
The assessment is as if there was no care going in. So adding all of the things that have to be done strengthens you case.
Now I have thrown a lot at you.
Just read the bits you need.
It is do-able and preparing well makes a big difference to the outcome.
Do come back if you need any clarification of guidance. There are many DST veterans here.
I hope my post is not unsympathetic. I know you will have a full struggle of caring on your hands already. I'm just trying to get the info. across.
Take care and best to you all.
Kevin
PS
I have put my links in order - I suggest you take them one at a time... they will build on each other.
Not unsympathetic at all. I am so clueless, I barely know the right questions to ask, so understandably it’s hard to answer.
I’ve checked the letter and it states it’s the “multi-disciplinary meeting following receipt of the checklist”. I’m not sure which of the stages you refer to that fits into, but I got the impression that there would be no more meetings after this; we’d either be successful or not. But I could be wrong.
Thank you for your guidance. I’ll start reading from the top downwards.
*Edited to state having read the above, I now know what a multi-disciplinary meeting is!
The meeting is a Decision Support Tool one. A DST.
So if you have a will, follow my post looking at that.
Clueless? No, I've been there, we all have.
It's just one of those learning curves most of us have had to go through.
Do keep coming back to this site. There are so many things which I never learned until someone asked. Like the social services OT service who will lend equipment as needed free of charge. And what to do when a loved one has 'this'.
Sorry I missed you first post - So a belated welcome
Please do come back if you get stuck on this CHC thing. Even a small 'wot?'
There is never a dumb question on this site which one or other of us has not already asked and my score in that area has been impressive. So do not be shy of asking anything, please. There are a lot of experienced folk here who are keen to support and help.
This is the bit where most of us add, "Ranting is entirely acceptable, there is a lot to rant abut sometimes."
My only advice is to err on worst case scenario. Two nurses came to my brothers home and asked us questions and if we were not sure they just said "its a yes no question" hmm if only they knew that PSP was not black and white.
We struggled because we ered on the positive and so my brother did not get enough boxes ticked.
Of course every area is slightly different with different staff/attitudes/knowledge.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
So do not be shy of asking anything, please. There are a lot of experienced folk here who are keen to support and help.
I dont know what do do
Cch funding and assessment!
Would a GP have accurate information about life expectancy of someone with CBD?
Honestly...you couldn't make this stuff up...
Father recently diagnosed, where do I Start in helping him to get the best care?
