continuing care

[kay1]

I am happy that members are being granted continuing care. I feel as though I am drowning in information but no results with anything. I was told this month after chasing that Frank had an assessment in March but i was given no information of this. and not deemed incapacitated enough for the CC. He feeds himself slowly and messily, tries hard with speech some can get deciphered. He is in the care home, in wheelchair, I have passed on all information of the PSP and he does get looked after well I just don't understand who actually says "Yay or nay to applications. for CC We do get FNC but we pay all the weekly costs ourselves. The speech therapist has seen Frank several times but no one as regards the PSP has been in touch since he was first diagnosed 2008. Case of "Yes, he has PSP, now close the door on your way out"

[jillannf6]

hi kay

sorry you r not having any success with the CHC

i tmakes sense for him ot have it (wel alll know that) but whawt si FNC?

Does he have a consultant who dxd him??

he needs one and a good GP and social worker to help push htis through fo him

lol JIll

[suzie1 in reply to jillannf6]

Hi Kay

Just thought I'd share my experience of CHC funding with you and anyone else who is interested. My husband fell and broke his hip in March 2010, he was in hospital almost 4 months, showing psychotic behaviour after the trauma. I used to get phone calls at all hours of the evening/ night when the nursing staff couldn't calm him down and often they ended up calling in the security guards to hold him down while they injected him with Lorazapan. In 'real' life he was the most gentle, funny and good natured person you could ever imagine. I had him home several times for the day and then overnight and he was fine, not displaying any of the behaviour he showed in hospital. I decided to bring him home to look after and the hospital assessed him for CHC. This was granted and was supposed to be reviewed after 3 months. I was given 20 hours of care each week. I suppose I was lucky that they didn't start the review process until October 2011. He now showed none of the disturbed mental state that had qualified him for funding in the first place, and so they decided to withdraw the funding. This despite the fact he was by now almost permanently bed bound, unable to feed, toilet, dress himself, constantly battling with either urinary or chest infections.... I could go on! Have a look at the Dept of Health CHC checklist (available on line) for an idea of how they score under headings such as behaviour, cognition, communication, breathing, mobility for eligibility. I'm guessing that sadly with pressures on budgets it's not going to get any easier to obtain CHC. Sadly, after deciding my husband didn't qualify any more, his health deteriorated even further and he died on Feb.3rd this year. It shouldn't be, but it is such a battle to get any practical help, free or paid for, that can ease the problems not only for the patient but also for the carer.

[kay1 in reply to suzie1]

suzie - You are right, post code lottery and the will to fight grows weaker. It seems so much easier to take each day as it comes. I do appreciate the way you have spoken to me and feel deeply for your loss.

[kay1]

Morning Jill, the FNC is "funded nursing care, which is a big help, we changed from our regular Dr to the one used by the care home. and when he was diagnosed, we asked if the consultant wanted to see us again we were told "NO". I would dearly like one of the PSP nurses to visit him, and will see how that can be done. Really need to "man up" a bit before my visit as the last thing I want is for Frank to worry about me.

Bless you for your reply Jill, always good to hear from you.

x

[hazelb]

Hi Kay.....all I can say is this....get on to Frank's Social Worker, district nurse, physio, GP & any other health care professional you can. Also contact your PSP nurse or whatever they're called now. Our's was Kat Haines who is brilliant. Unfortunately you will need to kick up a fuss but please don't give up. Good luck. Take care & keep smiling. Love Hazel B xx

[kay1]

Thanks Hazel, will start with the "keep smiling" and them to find PSP nurse.

[Hidden]

We are waiting for an assessment at the end of the month. My PSP advisor says there is a certain way to fill these forms in for best results. Your PSP advisor should be able to help. I also know that you can reapply every 3 months. When mum left hospital last month she was unable to do anything for herslef and the hospital deemed her ready for CHC assessment. HOWEVER (although they put her down as advanced Parkinsons!!) . Within a month she was wonder woman walking feeding herself(badly but succeeding). Just as it looked like her assessment at the end of the month will be futile she has now gone down with some sort of cellulitis in her face as a result of an excema sore that she scratched. Tonight she was barely with us and I had to feed her. She is awaiting some antibiotics from the doctor who called today. We shall see what happens next. Poor thing. She never complains. Have to all cross our fingers on this CHC business.

[kay1]

apart from the pain of seeing our loved ones deterioration, we have to fight and chase for help, like your mum, there are no two days the same, and when questions are asked of the staff they seem to be observing a different person that I see. I realise I must get a PSP adviser and start from there, seems a long hard road ahead. Hoping your mum has some good days ahes.

x

[kay1]

*ahead* x

[jillannf6]

HI ALL

i do no t knwo when i shall nee d the cCHC if indeed i do

but my thoughtsr with u all on this PSP journey

kat haines has indeed been brilliant and i am sure will point you in the right direction

lol Jill