My husband was admitted for long term nursing care to a place for ex military at the beginning of September. His PSP, diagnosed in October 2010, has done what it says on the tin and progressed (sorry if I sound flippant); he has by now lost his mobility, continence, speech, the ability to use his hands. He drinks with thickeners and his eyesight is affected.
Our contribution to his care is his state pension and half his army pension, a significant amount. As a result our house is up for sale and his half of the proceeds of the sale will be reassessed for further contributions which will reduce my chances of financing a decent place to live in the future.
This week I finally understood what Continuing Care means so began to ask if Eddie would be eligible. His social worker (relatively new and previous experience in the US) had never heard of it. The NHS Assessment Nurse for our region didn't know, would find out and get back to me but hasn't. The nurse manager at the care home didn't know but passed me on to their finance department who is fairly certain that a) it is only really on offer in England (we are in Scotland) and b) that it only applies if the person requiring care is transferred from a hospital to the care home. Today a CAB advisor, who didn't really know the answer either, thought that that was 'probably' the case.
Can anyone in Scotland shed any light on this for me, please?
Take care
SheilaN
PS I've said before on this site that I'm on the steepest learning curve I've ever been on. It seems it only gets steeper!!!
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SheilaN
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My husband Frank was admitted from hospital, but like you i knew nothing of the finer points. My priority was to get him into care home where I could visit easily. I am allowed to still live in the family home. I am told by family members to "let go" of the quest for CC Frank was 90 in July and diagnosed 2008, since the diagnosis we have had no contact with consultants, PSP nurses. Training course was held at the care home when Frank was first admitted by a PSP nurse, but knowledge is lost with the change in staff. Half of my frustrations lie in the guilt of having Frank in the home. and the other half is my inability to get more financial help. I know in Wales the care programme is totally different to one in England. I hope things will work out for you Sheila, will keep fingers crossed for all of us.
Thanks for your reply Kay. I can understand your family's wish for you to let go because I know from experience that pursuing admin issues can be very time consuming, frustrating and stressful and I'm sure you agree we have enough to contend with already! When Eddie was admitted to the home I left the PSP carer's pack which I know some of the staff have looked at. But your're right when you say the knowledge is lost with change of staff. The staff at Edddie's place seem fairly constant but it's a very large place with many staff over three shifts.However he is very well looked after and they understand his needs (even if they don't necessarily understand PSP).
Please don't feel guily about your Frank being cared for in a home. It means you can now spend peaceful time with him instead of trying to 'find' quality time with him in a day at home filled with looking after him. I hope that makes sense.
Sheila, it seems your Eddie and Frank are at about the same "place" with the PSP, wheelchair, incontinence, thickeners, he is in his 4th year now, There are 89 rooms in the care home spread over four floors, 3rd and 4th being nursings care. I do believe he has the slower progression of the PSP. The only time we get aggressive behaviour is when there is UTI, which does happen quite often. You are right in as much as the daily time I spend with him is quality time. It is our Golden Wedding anniversary on Saturday, so much to be thankful for, and that can never be changed..
I hope you both have a lovely day on Saturday. Happy Anniversary.
Take care
SheilaN
We were told to start with our GP, get a social worker or ask at the hospital. We were just in the throes of asking the GP when mum got admitted to hospital in July with a very bad infection in which we nearly lost her due to her UTI not showing on a normal urine sample for 4 days and her being asymptomatic apart from confusion which the nurses did not deem to be a good enough reason to start antibiotics.. When she came out of hospital she was being hoisted about in the nursing home and the hospital diagnosed advanced parkinsons and she ticked the boxes for assessment. However being the superwoman she is, and despite a further 2 UTIs, she fought back and by last week was feeding herself, albeit messily, walking with 2 carers or just me, talking well, wanting to go along to activities in the home and drinking loads by herself with few issues. We were certain that CHC would not be interested having seen what others have said. Then yesterday disaster struck and she has got Shingles. SHe is completely knocked back, it is in her eye and that is closed right over. She is in pain for the first time-no bruises or falls have given her pain up to now. I dont know how much more she will cope with but the assessment is in one and a half weeks and we are told that Shingles will take about a month to clear up. I will let you know if we get it. But it will be interesting to see how bad it needs to be before they relent.
Mum has had this for approx 5 years or slightly more. Good luck all those still fighting like us. The only compensation is that maybe others in the future wont have to fight like we have.
I hope your mum recovers from the shingles soon and that she doesn't have any more set backs. And I wish you all the very best with the CHC application.
I would just like one of the professionals in our life to tell me how to get the ball rolling on the CHC question. We have a review at the care home next week so I will ask one of the GP's there for an opinion.
Take care
SheilaN
Good idea. From what I have been told you definitely have to have a social worker involved. If all else fails try ringing your adult social services team, or I would do that as well because if the GP is not familiar with it he will tell you to do that anyway and time is of the essence. By the way, social workers in my experience do not work late on Fridays, have a lot of sick leave and annual leave, long lunch breaks, many appointments and are often part time. This sounds sour but it really is my experience both with Dad previously and now mum. Also if you look up the NHS Continuing Health site on a search engine it should give you a phone number to ring for your area. That is another angle to take. I emailed mine to get things going and they then arranged a meeeting , social worker etc. They can definitely advise you anyway. Good luck
I chuckled at your comments about social workers but I have to say that ours is wonderful. Although she isn't familiar with CHC because of her relative newness to the post and previous experience being in the USA she has helped us in so many other ways, is quick to respond, makes things happen and has saved my sanity on many occasions.
If and when I do find any more info about this I will certainly share it here.
We are still awaiting a decision here in Surrey after my partner's assessment on 31st August but I know it can take even longer. Everyone's experience seems to differ and as far as I can see, it's still a postcode lottery.
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