Thanks people. Very helpful. Brother holding the fort and it’s good to have his support. Shall keep you posted. Fear that Mum’s needs will be too great for care agency soon.
So, complaint via PALS establishes
- that discharge from community hospital was unsafe
- that another CHC checklist will be done (surely leading to full assessment?)
- care agency on standby (very expensive standby)
I have read the CHC bumph but categories under areas of need on the Decision Support Tool are clearly designed for no-one to meet the criteria and are highly subjective.
At previous CHC MDteam assessment it was pronounced that Mum had no problem with cognition nor behaviour. However, she tried walking somewhere unaided (alone in house) and fell. Obviously she does have problems with cognition and behaviour as well as the unpredictable blackouts.
She’s in an acute bed. Advice so far has been really helpful. Mum probably saying she wants to go home again. (There is no suitable accommodation for a live-in carer). What should I be doing/avoiding?
The very fact that she is in an ACUTE bed surely says it all?!
Of course she wants to go home, I bet every single person in the hospital doesn’t WANT to be in hospital!
The point is that is she going to be SAFE at home?
I think her SAFETY is paramount.
Not just walking, but if she is mentally impaired, even if she had a Lifeline pendant, would she remember how to use it? (Especially if she was having a medical emergency. Would she even recognise that she was having one?
Yes,good point about safety, that is my main concern
She had a wrist-careline and also a “falls detector” and the system worked well.
She cannot mobilise without assistance but decided to walk somewhere unaided (for the first time in 2months!) Then fell.
She told A&E doctor that she walks about unaided all the time.
I happened to be 200 miles away at the time. Now realise that being there is not necessarily helpful, overall.
Unfortunately Mum can be very convincing - despite v v serious difficulties with speech.
My own health is suffering.
****
I have read the CHC bumph but categories under areas of need on the Decision Support Tool are clearly designed for no-one to meet the criteria and are highly subjective.
Well spotted !
Ties in with the other " Main " thread on CHC … especially my very first posting thereon … just over a year ago :
Why so complex in all steps … from even knowing it exists to finally receiving the green light ?
Only one real answer … > it is designed to be so because it IS being rationed > … similar to casaulties in a battle being assessed by the medics as to who is probably going to live and who isn’t ??? >
I’ve read all your posts, Chris, and my own experience bears out what you say.
It’s political short-termism of the most damaging kind, people who care for family-members with long-term health needs go on to develop unnecessary ill-health themselves. Recognising that “compassion fatigue” is ‘a thing’ has opened my eyes. Something just snapped in me the other day after years and years of devoted caring for both my ill/elderly parents. I can still deal with the financial, administrative, managerial aspects of carer role but I CANNOT track down even one more book by an author mother likes but hasn’t read yet and no I can’t pick one more hand-tied posy from the garden for her nor batch-cook 60 of her favourite nutritious meals for freezer in the form that won’t trigger her (life-threatening) dysphagia. Nor can I organise one more musical recital to break up the monotony of her day. I’m depleted. Not worn out nor burnt out (I’ve been both those things at work) I’m just empty. Empathy dial is now showing “zero”. If one more of mother’s friends OR MY OWN FRIENDS asks"how’s your mother?" I’m going to tell them she is dead.
Yep … quite a bit out there in the way of " Advice " is " Misleading " when it comes to day to day reality.
Regretably , both CUK and The Carers Trust are somewhat guilty of that … being remote from the day to day
caring situations we all face doesn’t help.
They , themselves , admit to not reading the forum … probably the GREATEST source of information on CarerLand there
is on the Internet … and will continue to be so SO LONG AS WE ALL KEEP IT GOING !!!
In our world , CarerLand , WE know what’s going on … what the actually reality is … and , regreatably , it is a
different world when compared with what the books and experts THINK it is !
CHC / NHS Continuing Healthcare thread ?
Perhaps a " HEALTH WARNING " type sign at the very top or … TO BE READ IN CONJUNCTION WITH THE RATIONING THREAD ?
Just a few to conclude … ARE ANY OF THESE WORKING / DELIVERING AS THEY SHOULD ?
Care Act , 2014.
Needs assessments.
Carers assessments.
Hospital discharges.
GP surgeries … fast tracking carers
NHS … involving carers more in the decision making.
CUK … encouraging carers to participate in their decison making and policy planning ( After all , we are the intended beneficiaries ! )
7 listed …most would be fortunate to say …1 … and that after a recount ???
Enough from me … BACK TO THREAD !!!
You definitely come into my category of Clapped Out Carer. You have done too much for too long, and now there is simply nothing left for anyone.
Yes I am a clapped-out carer! Ha! One among many.
I’m not taking one more clean nighty to hospital and I’m not doing one more load of hospital-bag laundry either.
When mum was in Royal Bournemouth Hospital, did my best to up up with the nighty demands, bought more, used Dettol liquid to ensure bugs gone, but some nurses would just roll up soiled clothes and stuff them in mum’s locker without putting it in a bag! Me? Just 6 weeks after a knee replacement!
Yuk, BB!
Update: Mum is still in hospital on an elderly care ward. I met bedside with her neuro consultant and specialist nurse yesterday and the former said that Mum’s ‘impulsivity’ is part of her neuro condition. " A balance is needed between her autonomy and safety." Yesterday she couldn’t get out of bed because too dizzy and faint. She was in day room today, in wheelchair. So much for her “mobilising with 1 assistant”-she can barely stand when transferring from wheelchair -it was a lengthy and precarious business.
Consultant and nurse both note that she has already had one unsafe discharge from hospital. I’m due to go away for a couple of days. I have read the bumph etc but the actual stages of this charade are confusing. Best to make myself scarce while the hospital tussle with the problem of what to do? Or better to be more proactive and make a big fuss?
Any opinions/advice welcome.
Difficult call !
How much faith have you in said hospital staff following The Book when it comes to a potential discharge ?
The answer to that one is the answer you are seeking ?
Wrath ?
Optional … logical thinking defeats anger every time ?
… and that Book is your best ally.
An inbuilt check list … all boxes ticked ?
The Book ?
Thanks for the link,Chris.
It’s definitely a complex discharge, not a routine one.
I’ve just found the Decision Support Tool from her last discharge meeting and, in my opinion, she now scores x5 high priority and 3 medium. (2 low, 2 none). Previously they scored her 2H, 2M, 3L and 4N
Should I be getting an independent nurse assessment/instructing solicitors?
Definately seek a second option … I’ll leave that aspect to others with upto date experience.
CHC / NHS Contuing Healthcare … always hovering in the background.
That aspect is a " Must " BEFORE any discharge.
If you don’t ask , you don’t get … even a " Might be a possibility here ? "
DEFINITELY GO AWAY.
Then you cannot be relied upon to be there “just to…”
You know that mum is now in a safe place, and that there is nothing more, for the moment, you can do for her. This may well be the only time you can go away knowing that there is nothing more…
You are very tired, physically and emotionally. Go away and recharge your batteries.
Even in hospital, she is now so frail that she is still at risk of falling or hurting herself. You CANNOT protect her totally from this, wherever she is.
From your description of the care she needs in hospital, her future needs cannot be met at home.
It may be what she wants (isn’t it what we all would want?) but it just isn’t possible, her needs are simply too great.
Would you agree with that statement?
I was told that for my own mum, even a live in carer wouldn’t be able to cope with mum, as she needed round the clock care, someone on duty all the time.
Once you accept this, then it’s a choice, in theory, of care home or nursing home?
Again, it sounds like a nursing home is the only option left, if she can’t even stand on her own, so no care home would take her.
Once you accept this, it’s really just a choice between which nursing home?
That just leaves one question. Who will pay? Put that away in a drawer for the time being. That battle is for another day.
Thanks so much, BB.
V helpful.
You’re right. Shall follow your advice. I guess it is tricky in that Mum seems, in many ways, still to be compos mantis. She will blame me if I’m the one who points out the need for nursing home. But actually, its not my fault!
Agreed.
Let the doctors and nurses take the “blame” they are paid to have broad shoulders!
Right. So I wrote formally to the hospital via PALS and delivered letter by hand to the office just now.
Then I popped up to see Mum and delivered various bits of happy news.
She always looks extremely comfortable and content, propped up in bed in a pretty nightie reading yet another book.
A nursing assistant tried telling me how capable Mum had been earlier, sitting in chair,getting to commode without help etc so I was able to say “great” and point out how this proves how unpredictable her needs are because when I was there earlier … etc.
I then explained to Mum that I’d written a letter, that we need all the facts,another assessment etc. I said we wouldn’t let her end up anywhere horrid and went over again what the consultant said yesterday about impulsivity. It’s not your fault Mum. She was perfectly happy with this.
Thanks for ongoing support. (I spelt compos mentis like a praying mantis earlier. Woops).
Don’t worry, we are not the Spelling Police.
I’ve just bought a second hand Hudl to use when it’s not convenient to use my computer (eldest son is a shift worker) and didn’t realise that it had predictive text!
Apologies to anyone who I have accidentally written garbage to!!
My FIL ended up in a residential home, fully compos mentis , purely because his legs had got so frail he couldn’t stand up any more. Sometimes the bodies just get too old. (Btw this was 15 years ago, now days he’d be sent home, told to stay still and have carers…all of which he’d ignore and keep falling 
)