Paid Carers coming to help us…

[Wendy2020]

Hi, I am in a bit of a dilemma (again) after my father having lost more mobility and an increase in incontinence issues since his recent hospital stay. (He now has a catheter but needs assistance with this and bowel management.)
Before this latest hospital visit he was able to walk 100 yards or so twice a day with me locally to the house with his sticks and also short trips around the local town, (when we were not in lockdown.) He was able to move about the house OK, get up to bed with my assistance and the stair lift and we had a private morning carer who was hired to give me a lie in. I was able to cope with his urine incontinence (just) and his personal care, but we both just ‘worked around it’ out of necessity really. (Neither of us was 100% comfortable with it, but needs must and all that.)
Sadly, since my father’s return he is now confined to living in the front room. He has a hospital bed, a commode (pads 24x7, but he had this pre hospital but for urine incontinence only, now he has bowel incontinence too…) and he is 100% reliant on us for EVERYTHING…
The poor chap is at his wits end (and totally depressed, despite wanting to come home) as his sight and hearing (which were impaired before hospital visit) seem to have worsened too!
He was discharged with 4 x paid for carers from Adult Social Services (Renablement service) but.. after the discharge team promising me that anyone being discharged gets ‘up to six weeks’ FREE care, they then threw a curve ball and said after two weeks we have to start paying (as my father is over the threshold and has savings to pay for it.) It is not cheap for one but also I feel we were lied to to get him out of hospital!
I am speaking to the Community District Nurse on Monday and will request a CHC assessment for my father, but it is bringing me down too to have to constantly battle with these people!
Back to the question in hand…
If we are refused CHC, I think it is important for my father’s welfare that we sort out a small team of regular carers to take care of his new needs. I really don’t want to be paying an agency (or even private carers) £20 per hour as I feel he will still need 4 visits a day to do his incontinence management. (I truly cannot do it, I have tried but I feel ill and it is not pleasant for him either to have me feeling so out of sorts about it, as well as his dignity left in tatters.)
So I am in a strange place of having to work out what it will cost, how I can arrange it privately and keep everyone happy.
I think bowlingbun? Said I have to focus on his NEEDS not his WANTS… But I am not sure if this is leaning towards a residential home, where they can assist him with his toileting 24x7, or trying to keep him comfortable at home…
(At least we are talking about it together, but it is extremely difficult for both of us. I am going to ask MIND if they can come for a visit, if they are able to during lockdown…)

NB He is over the threshold for automatic assistance and if the CHC element is not granted, he will have to be 100% self funded.

[bowlingbun]

Residential care is really the only option left due to his incontinence. He should never have been discharged home in the state he is in, because he NEEDS 24/7 care.
It would be best to ring the CUK advice line, I really don't know the new Lockdown policy and procedures at all, but normally someone cannot be charged for care until a CH assessment has taken place, and a formal financial assessment.

[Penny]

Wendy .... speak to the GP and ask for FAST TRACK CHC. My Mum is in a care home, self funding but had deteriorated quite drastically. That is what Fast Track is all about, not just end of life care. I had to point this out to the GP who did not know this and was then really helpful. The paperwork is minimal and I filled in all Mum’s personal info to make it quicker for the GP. It was decided within a week and the NHS have paid all her care home fees since 1 October.

It does sound like your Dad has deteriorated rapidly too, so it honestly is worth applying. let me know how you get on. Xx

[Wendy2020]

Thank you bowlingbun and Penny for your kind words of support. I think I wrote this the day after my father returned home and I was in a right state at the further decline in his health. I am pleased to say two weeks on he has rallied a little, although is still confined to the living room with just very short walks using a frame to the kitchen.
I got the physio to come to the house, (after waiting since early August since his last discharge) and they will review him in two weeks time.
We also have the district nurse calling daily now (it was bi daily but even they knew my fathers wound management needed daily attention)... They are also taking on the CHC assessment, but did warn me it could take months.
No one has mentioned Fast Track again. But thankfully he has rallied a little.. The GP only agreed to put him on the waiting list for the local Hospice and ready to go for any Palliative care should/when he will need it. But I will bear in mind what you say Penny if it comes to it..
We are down to 3 carer visits a day and his incontenance has settled. We just need to work out a plan for when he wants to use the commode and I am the only person around.
I am managing better now, but it is rather full on as you both know.
I will keep going for as long as I can, but I am fully aware that I could soon get burn out, especially with having to deal with all this bureaucracy!

[Wendy2020]

Just to update others after chatting with Penny...

The District Nurses are aware of Fast Track, but say he is not unwell enough and has longer than they initially thought, so we are going down the 'normal CHC route.' Which I have been warned can take months! I am also yet to hear from the senior DN in charge of the CHC applications.. but another nurse said this was because they wanted to see a 'significant deterioration' in my father before proceeding, so they might be able to jump straight onto the Fast Track route.
It is all getting too complicated for words!
I am keeping a record of everything and if needs be, I would claim backdated care costs we have had to pay out as I know another member here has done this...
I can but try! (But sometimes don't know what the best is...)

[bowlingbun]

The DN MUST do a "checklist assessment" at the start of the process, and SHARE the outcome with you.
Has this been done? If you don't know, then either it wasn't done at all, or wasn't done properly, as it has to involve you.
Have a look at the CHC Framework, find the checklist, and do your own score.
Then see where you and the DN differ.
It's all horrible to go through.