Thanks Tippy and Marie for advice regarding CHC a while back.
My brother has now been assessed three times (once before going into the nursing home, twice since). Last time he still didn't "tick all the boxes". However he has another assessment coming up and so we're keeping our fingers crossed.
Erica XX
Erica good luck to him. Are his community nurse or social worker any good? Or the manager of the care home? You need them on your side to get this through. Even then it is difficult. Jumping through hoops springs to mind!
Can you be at the meeting? Have you been at the others? Tell them if you think they are getting their scores wrong. You have to be prepared to talk up for him as he is too ill to do it himself. Don't be too honest and play things down as sadly it gets you no where!
Let us know how he is?
Marie x
Thanks Marie.
We seem to be fortunate with regard to the staff. The Manager, nursing staff and carers are on side with regard to CHC.
They're very vigilant, record every incident, monitor the progression of Wal's symptom's and are in regular touch with the home's visiting GP and Mental Health Team.
As with they were at the previous assessments my sister and brother-in-law (who live a short drive away from the nursing home) will be at the next one as will a member of the nursing staff.
At the time of the last assessment he needed help to dress and undress, wash, shave, bathe or shower and use the toilet (for some time he has often struggled to get to the toilet on time and often missed because his eyesight is so bad).
But, as he was still able to walk with the aid of a walking stick, didn't have any pressure sores, was not judged to be incontinent and was still able to feed himself he failed to qualify for CHC.
By now, although he is still walking with the aid of a walking stick, he is much more frail and stiff and he's having more frequent falls (including recently falling out of bed) - and yet I've seen him almost running on two occasions recently.
He can still feed himself although he increasingly struggles to see what's on his plate and often puts an empty fork in his mouth. He now uses a spoon more often than a fork and knife and needs certain items cut for him.
I think he's approaching incontinence in so much as he struggles more frequently to get to the toilet on time, misses more frequently because his eyesight is worse and now needs someone to wipe his bottom and last weekend had three "accidents". He also has two pressure sores.
The dementia - short term memory loss, confusion, hallucinations, paranoia, aggression and sometimes violent outbursts (the latter usually when asked to do something he doesn't want to do) - seems to be worse.
He often refuses to go to bed, preferring to sit and doze in an armchair and sometimes doesn't sleep at all but instead roams the corridors banging on the other residents' doors. Any attempt to persuade him to return to his room and/or go to bed is more often than not met with more aggression. But at other times he's the polite, gracious, gentle man he has always been.
He's been on some medication since February (I can't remember the name) and, as it didn't give him any adverse side effects, they've recently increased the dose. For this he's being monitored by the Mental Health Team.
I spoke to him this afternoon (when my sister or brother- in- law visit, which they do between them three to four times a week, they call me so I can have a chat with him). He was very befuddled poor soul. He was concerned as to the wherabouts of his passport which he will need for our holiday he said and also wanted to apologise to my husband for asking him to take a photo of his pressure sores yesterday before waiting an hour for the ointment to work (we've been back in Wales since Tuesday). But if he has what I call his happy flights of fancy it's not too bad - it's the dark imagininings which are upsetting because they cause him such anguish and distress.
I'll let you know if progress is made with the CHC.
Erica xxx
John cannot get CHCdespite him now being in a nursing home as the care home could not meet his needs and I had to move him. He is doubly incontinent, cannot even stand on his own let alone not walking, he cannot feed himself and his speech is nonexistent. I just do not know how you get it. Good luck x
Have you contacted your local MP? They seem to take notice of them. At least they have to reply and give some reasons for refusing it ? I would really try that.
Marie x
Our MP is involved and at least he knows the disease as had a neighbour who suffered from it
I'm so sorry.
Your John should surely be eligible - it seems eligibility is open to interpretation. It's so unfair.
Have you considered seeking advice from a legal firm who specialise in Continuing Health Care?
I stumbled across this one when doing an online search regarding CHC. I'm not sure it's a path you can take and you definitely shouldn't have to take it but it might be worth reading about the services they offer if nothing else.
hughjames.com/service/nursi...
Erica x
Not been down this road yet. There is also Beacon that has a good reputation. All our funds are going on paying Johns fees though. He is also on thickened liquids and puréed foods. What CHC say is he does not have a ‘primary health need’ x
Yes, of course Beacon.
I'm so angry on your behalf. As if dealing with this cruel disease isn't enough without having to jump through hoops to get what, it seems to me, John so obviously deserves. I hope your MP is able to help.
Good luck.
Erica xx
Two points, One, make sure they know that your brother is “predictably unpredictable”. I.e. the running and falling. Two, DONT use the word dementia. That is the biggest get out clause you can give them. Keep talking about his illness and the progression of PSP.
My heart goes out to you. We sailed through our CHC assessment and only received kindness and understanding from them, but the CHC manager had come across PSP before. Admittedly it was a several years ago now. No doubt budgets have changed.
Best of luck.
Lots of love
Anne
Thank you very much for that advice Anne. I'll pass it on to my brother-in-law and sister who will be attending the assessment with a member of the nursing staff (thankfully the staff in the nursing home are "onside" regarding this).
Eligibilty seems so open to interpretation. Dickenson2's John is doubly incontinent, cannot stand on his own, cannot feed himself (and he's on thickened liquids and puréed foods) and his speech is nonexistent. CHC say he does not have a "primary health need"! Their MP is involved but it shouldn't come to that should it.
Thanks again.
Lots of love,
Erica x
2nd Continuing Care Assessment
Continuing Care Brickwall
Palliative Care, (Continued).
continuing care
