Continuing Health Care - Preparing to fight PCT's decision

L-J-R

It can be applied to care in the home Barbara Pointon fought a landmark case to get funding for her husband Malcolm. There is quite a lot of information on the internet about this.

hobbledehoy.

My thoughts and admiration go out to you all in having to take up these 'fights for justice'. It is so wrong that others (mainly family members that have to take on these large organisations in such a manner to prise open the coffers that the patient has contributed into for a lifetime)

I remember my mother when she was in the last couple of years of her life, telling my wife, that she had it all arranged if she thought she was going to end up in a care home. She had her whisky and a selection of tablets that she had secreted over a period of time. She wanted to choose what happened to her and didn't want to be a burden on anybody in the family.

Now for the first time after reading this thread I know exactly what she meant and why she meant it!

Thankfully she died peacefully in hospital after only being in there for a couple of days. She just didn't wake up one morning.

Katykat

Your mum was lucky Hob, I think most people have thought the same thing at some point in their lives. Unfortunately, most residents of care homes do not have the faculties to do anything about it. My mum always said a similar thing ( it usually involved tablets, guns or once even a carving knife!!!!) but when the time came, she silently slid into dementia and 4 yrs later is still sitting in the same chair looking at the same 4 walls and doing absolutely nothing ALL DAY LONG. I dont know what ( if anything) she is thinking, she cant tell me. I have had to change my whole attitude over the last yrs. I no longer look at her as my mum, just as "someone i go to visit". Mum "died" 4 yrs ago, but God forgot to take the whole of her.
( & still the B******s at the PCT try to tell me she's not ILL

hobbledehoy.

Katykat wrote: »

Your mum was lucky Hob, I think most people have thought the same thing at some point in their lives. Unfortunately, most residents of care homes do not have the faculties to do anything about it. My mum always said a similar thing ( it usually involved tablets, guns or once even a carving knife!!!!) but when the time came, she silently slid into dementia and 4 yrs later is still sitting in the same chair looking at the same 4 walls and doing absolutely nothing ALL DAY LONG. I dont know what ( if anything) she is thinking, she cant tell me. I have had to change my whole attitude over the last yrs. I no longer look at her as my mum, just as "someone i go to visit". Mum "died" 4 yrs ago, but God forgot to take the whole of her.
( & still the B******s at the PCT try to tell me she's not ILL

That must be so hard. I can see where you are coming from though.
I look at my wife sometimes, and being the feminine lady she is I know she would hate to think that one day I might have to look after her every needs.
What would I do for her, anything she aked of me. I couldn't just let her deteriorate to a shell. As you say, what goes on behind those eyes no one can tell.
My life would be finished anyhow if she went first so whatever I did wouldn't matter to me

L-J-R

I feel for you KatyKat – and all others seeing loved ones in the grip of this cruel condition. However hard, keep seeing the person you love within that shell. My mum died after five years in a care home – for the last two, she was unable to move or speak, so depended on care assistants to anticipate and react to her every need. The PCT tried to tell me she had no psychological or emotional needs – don’t know how they could tell. My application for funding was turned down twice, even at SHA level, as her needs were identified as primarily ‘social’. ‘They’ infer that her condition was a result of ageing, whereas it was due to a degenerative brain condition. I know people of the same age and older, who can live independently, articulate both their needs and wishes.

monkeyspanner

atoneswitsend wrote: »

Thank you Monkeyspanner. Most useful advice as always. I am photocopying all the records I can lay my hands on.
The CHC was awarded to my SiL wef 1 November so there will be a review early next year.
This is now top of my priority list, above the retrospective claim. What has happened will not change so I think that can wait whilst I turn my attention to the review assessment.
So any advice would be welcome. All I know is that this will be dealt with by the specialist nurse asessor. but I do not know what is involved.

Sorry about the delay in this reply we have been on holiday some of which spent sleeping in Gatwick airport! Another story and another battle I suspect.

We never had to deal with a review as my MIL unfortunately did not live long enough. I would have thought the starting point would be the previous DST and assessing if anything had changed significantly. One key point here would be the principle that a well managed need is still a need as stipulated in the national framework. So if due to care and medication your SIL has improved the assessor may try to argue that there is no longer a need, obviously this should be resisted. If your SIL has developed other problems I would try to have these reflected as a higher level of needs. Hope this helps. Good luck.

DiggerUK

Nothing to report at the moment, but it seems that meetings are kicking in to place soon, following delays with December weather and holiday periods. Can't blame the NHS for that!

Good New Year from all at Digger Mansions.

Katykat

L-J-R, did you get the funding in the end?

L-J-R

They offered, somewhat reluctantly I feel, to fund the last few weeks of my Mum's life. Their rationale included her increased withdrawal, though I don't know how that could be judged, given her inability to communicate, move independently etc. Various researchers I accessed via Google, seemed to agree that those with dementia were being deliberately excluded from palliative care, cost being an obvious factor.

DiggerUK

Update 2.
Sister finds that the visiting nurses are better informed than her about her FIL's (Barry) fast tracked help, they are now providing night cover 5 nights a week, she is also getting some weekly allowance of hours that mean she can get about 10 days holiday a year, plus they are sending more day nurses in to wash and clean Barry. This allows her about 4/5 hours on two mornings a week so she can go and do whatever.
When she phones the powers that be, it turns out they made these decisions days ago.....and "can't understand why nobody informed you."

If you think that is weird, the hospital phoned late this afternoon to ask her to get some clothes ready for her MIL (Wendy)....she goes in to a fully funded care home tomorrow. And again...... "nobody knows why" she wasn't informed!!!

Does this sound fishy, or normal. Do they have different teams of people not talking to each other. Thankfully I prefer c0ck up to conspiracy theories.