Just joined the forum

I’ve been caring for my Mum for several years (and my Dad before he died 4 years ago) with a Carer calling each morning for 3 years to wash and dress her. Unfortunately, she had to go into hospital with pneumonia so she lost her Package of Care as our LA removes it after a week. She’s now been in for 7 weeks and has declined rapidly. Her initial treatment actually ended after 10 days and the doctors said she could be discharged but neither OT nor Social Worker did anything until I complained to their respective managers. Mum is now so bad she’s been awarded CHC (though that took 2 weeks after applying).

I’ve been told that the Local Health Board (we’re in Wales) will take 6 weeks or more to find a PoC (that will mean she’s been away from home for 13+ weeks). Without CHC the wait for a PoC would have been much longer - Social Worker says over 200 on waiting list in our LA and some people wait over a year.

I’m trying to get Mum into a Care Home while we wait but that hasn’t been easy either. I’ve had to phone everyone myself throughout this to get anything done at all. I’m hoping to get her out of hospital soon and then really hope the PoC isn’t delayed beyond 6 weeks.

She needs much more care now than before admission (4 double calls a day rather than one single call) so it will be harder.

Sorry for length of introduction! I hope the forum will be a help to me as things progress.

Hi Davidge, sorry to hear about your mum.

My mum would be OK for a while, end up going into hospital for something, and come out a bit worse than before.
Endless battles with hospital ward sisters, social services etc. Horrible and exhausting too, as I also have a son with severe learning difficulties, and was in the process of having two knee replacements.
As mum has been awarded CHC, can you have Direct Payments instead? (not sure how it works in Wales).
It might be easier for you to find carers locally this way.

How old is mum?

I am now going to suggest something that doesn’t sound very nice, I’m afraid.
I googled “Signs of Dying” when mum was ill, with tears running down my face, but i found some really valuable information written by people from the hospice movement, about how the body slowly shuts down over the last few years. I would urge you to do this too. My mum lasted another two years, but the information I read made it easier to understand the nursing care mum had.

Does mum own or rent her home? How old are you? The answer to this is VERY important, not nosey!!

Thanks for the reply.
I’ll try to answer your questions.

I don’t think Direct Payments are possible with CHC? I think it might be difficult to find carers anyway, and what the Council would pay probably wouldn’t be enough. I actually phoned every single Agency in the area a few weeks ago to see if I could pay privately just to get Mum home. None of the agencies that usually work with the LA had any availability at all (80% just said they won’t cover our village). One agency (Home Instead) might have been available but 4 double calls a day would cost about £2000 a week.

My Mum is 91. She was very good for her age before this (I even took her to Wembley last June to see football and we stayed in a hotel). Now I’m not sure she’ll live to the summer. My sister and only grandkids live overseas and they’re travelling over now as I told them not to wait until July as planned.

My parents moved in with me and sold their house when my father became ill.

I’ll be 60 in the summer.

TBH, I’m utterly exhausted after 7 weeks of constant battles with everyone. The care has been dreadful. If I’d done nothing then everyone would just have let her stay in hospital for months and months. A neighbour in his 80’s died 2 weeks ago still in hospital waiting for PoC after 9 months. He had no family.

CHC is funded by the NHS, not the local council.
It MUST be payable at a high enough rate to meet her needs, so start by asking how much they are allocating for her care package.
I’m not familiar with the differences between Wales and England, but if you Google “NHS Continuing Healthcare Framework” there is lots of information.

Yes, I know it’s funded by the Local Health Board not the local council - the Social Worker was very quick to point out that he now hasn’t got to do anything (which is what he’s tried to do throughout).

I also know that, at least in theory, it must cover all assessed care needs. It will pay for a place in a Care Home without any additional payments from us. All the Care Homes (with Nursing) in this area that charge anything near the Council allowance (it’s about £600 a week here) are full with Waiting Lists. The only ones that can take my mother quickly charge £1000+ a week which is covered by CHC (but we couldn’t afford under Council funding.) The Home that told me they’d take her this week are now asking for the General CHC to be upgraded following their assessment (sorry I’ve forgotten the 3-letters for the higher category).

In terms of getting her home with me, I’ve been told the maximum would be 4 double calls a day. I guess I could use Home Instead and get LHB to pay (though it would probably be a fight) but they’d take 2 or 3 weeks to put anything in place by which time we’d be close to getting the LHB Carers anyway.

I’m also wary of the reassessment in 3 months as I’m sure the LHB would take away CHC if they could. The Ward Manager was twice asked for further information before it was approved (caused the 2 week delay).

It could well be I’ve not explained nor understood everything properly as the last 7 weeks have been a steep learning curve at a time when I am simultaneously upset, exhausted and angry.

It’s all a minefield, only other carers appreciate just what a heavy toll it takes on family.
So many people think if mum is in hospital it makes life easier, nothing could be further from the truth.

Some progress today. I’ve been told that the move to the Care Home is booked for Tuesday. I’m hoping that Mum will respond to the new environment.

I’m now trying to find the contact point at the Local Health Board for me to check on the progress of the Package of Care. I want to make sure she is on the waiting list and isn’t forgotten.

The website doesn’t help. I was given an ‘enquiry’ number and they put me through to so rib-eye but I just got an answerphone. I left my details and hope they call back - though I’m not sure if it’s the correct section or not.