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Carers UK Forum • Please tell us about your experiences of hospital discharge - Page 5
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Re: Please tell us about your experiences of hospital discharge

Posted: Sat Jul 14, 2018 5:43 pm
by Rosemary_1706
Is Michael too busy collating our responses to write a simple thank you?

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 16, 2018 9:36 am
by Michael Carers UK
I'm sorry I've taken my eye of this thread. We set it up in early January to gather evidence on how the pressures on the NHS were affecting carers during the winter. I asked for responses to be emailed to our media email address and did highlight the these to our Policy and Public Affairs team who were leading on this story.

I'd thought that the thread had then become a general discussion on hospital discharge and I'm sorry for not thanking members for your subsequent posts about your experiences.

Since October our Membership and Volunteering team (which oversees the Forum) has consisted of me and Lucy (who works three days a week). We do monitor the Forum every day but unfortunately we don't have time to read every post. In August we will have a new member of the team joining us and will then have more time to support the forum.

We do appreciate your posts in this thread and I will direct our Policy and Public Affairs team to the most recent ones.


Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 16, 2018 9:48 am
by Chris From The Gulag
No real problem , Michael.

Just demonstrates just how far detached Carers UK have become from family carers , specifically on this forum.

Once apon a time , both Gavin and Matt dropped in daily to mix with us poor plebs ... made us feel part of the " Family " as opposed to the furniture.

The knowledge and expertise right under your very noses ... ignored and wasted by Carers UK ... to what real end ???

Still , the problems unleashed here are way beyond Carers UK's comprehension , and ability to deal with inhouse.

Unsafe hospital discharges ... calling at all stations ... terminating at CHC and NHS funded care ... with many family carers alighting with newly acquired nursing skills ... to add to their already inadequate cvs ( Definition of a family carer ! ).

How Carers UK will handle it will be " Interesting " ... given just what has been uncovered ... but known throughout CarerLand for years !

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 16, 2018 10:18 am
by Diane_1603123
My partner's 88 year old mother was admitted to hospital 3 weeks ago with a fractured hip.

Plans are now in place to discharge her home. She has bad dementia (8 years) and hospital doctor very concerned that she has stopped eating and is basically shutting down. Partner can't cope he works long hours, away from home. Neighbours are in the late 80's and bad health. The only toilet is upstairs. They live miles out in the country. But will it stop them discharging her with the 4 times a day 'home first' package? Think we all know the answer to that one.

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 16, 2018 10:24 am
by jenny lucas
Diane, I don't say this lightly - BUT, any chance your partner's mum could move in with YOU and YOUR mum? That way you could spread the cost of care across TWO carees?

Just a thought!

(It's sad if she is 'shutting down', but PLEASE don't try and 'eke out' her life unnecessarily - that happened with my SIL's mother when she 'turned her face to the wall' and stopped eating - then she 'recovered' and they went through another two years of complete hell - as did she, poor lady - until she finally died......)

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 16, 2018 10:30 am
by Diane_1603123
Hi Jenny!

I'm back to doing most of the care myself - with respite during the day. The cost of live in 'care' was horrendous and the carer attitudes caused more problems here than they solved.

The agency have a large number of folk from South Africa who don't appear to be well trained (with a few exceptions) don't appear to be interested in the person needing the care, and really only in it for the money. Vast tax free swathes of it. It would seem.

Re: Please tell us about your experiences of hospital discharge

Posted: Tue Jul 17, 2018 10:08 am
by Rosemary_1706
Thank you Michael for your reply. I wanted to share my experiences with you and fellow carers. It's important to inform others of our poor discharges and assess trends. As I am consulting solicitors regarding my mother's multiple inappropriate discharges which contributed to her subsequent demise, I was in no position to volunteer as a media poster child. Hence my not contacting you directly earlier on.

I appreciate your telling us what's happening.

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 23, 2018 12:46 pm
by Caren_1807
I have a slightly different situation, as in that my Dad lives 170 miles away and wont come and live with me despite my selling up and buying a bungalow so he could.
We lost Mum to cancer 2 years ago Dad went down hill fast, loosing loads of weight. After a nasty fall requiring x-rays he was diagnosed with metastatic melanoma (terminal) within 6 months of loosing Mum.
So I have been traveling down every other week ( as much as I could, sometimes I'm just to tired. I work full time to pay for the new mortgage!) I do his cleaning shopping, washing, ironing, gardening, paying bills ect. as well as trying and scrap back money from unscrupulous business that got hold of Dads details and are relentlessly taking the few pounds he has off him.
He has had carers for a year or so at first 4 calls a day as he has Alzheimer's and is on really potent pain relief, so they need to administer it.
He was in hospital with chest sepsis in Jan, I was away but on my return I went to see him. The hospital was rammed he was on an ophthalmology ward. They informed me they were sorting his carers calls before they could let him home ( he was well by then and quite upset at being in hospital so long) because his care package already in place was via Social services, CHC had to set up new care package (makes no sense as he was used to his carers) I said if they could get it set up for Monday morning I would take him home and care for him over the weekend. But I had to leave Sunday night to drive home as I had work Monday morning, this was Saturday morning. They couldn't discharge him Saturday as they couldn't do his CD's so it was arranged for Sunday. Before I took him I asked numerous times " the care package will start in the morning wont it" to which I was assured it would. You guessed it...it didn't.
Thank goodness I didn't leave Sunday night as no one arrived Monday morning, in fact no one arrived until Wednesday! Imagine If i had taken them at there word and gone home. No one to administer Dads pain relief or feed him ( he forgets to eat) for 3 days! He currently has a full time carer as he wanders, doesn't eat. For how long I don't know I am up and down the A1 for meetings and assessments weekly. Its all so tiring, the emotional stuff as well as the driving.
I don't know how you guys do it!
I did put in a complaint I was so angry I wrote to everyone I could think of even Teresa May, standard rubbish replies from all and a crappy sort of apology from the hospital Trust.
He deserves to be cared for properly he worked all his life never had a penny from the government, paid his taxes and taxes for the lads he employed, worked into his retirement, never been in hospital until now. Now he needs and deserves care and help in his last days. that's why I wont allow them to put him in a home he just wants to die close to my Mum, the love of his life.
So I will keep travelling to meetings and assessments and shout loud for him, as that's all I can give him.

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 23, 2018 1:26 pm
by bowlingbun
"I won't have him put in a home". Realistically, that is going to end up the only option is he lives much longer. Surely it would be better for him to have 24 hour care in a good nursing home so that you could avoid so much stress? How much longer are you going to be able to keep up your travelling? Until you have an accident because you are so tired? When you have a breakdown, or similar? Or when you have a stroke or a heart attack? Haven't you tried your best already, and it's no longer enough?
We tried too long to look after our parents. I developed a life threatening illness, had major surgery. I found my husband dead in bed from a massive heart attack. Don't let this happen to you.

Re: Please tell us about your experiences of hospital discharge

Posted: Mon Jul 23, 2018 1:41 pm
by jenny lucas
Sadly, so much depends exactly on what his life expectancy is. Some terminal patients do much better than the statistical prognosis, some much worse. 'It all depends' - which isn't very helpful.

That said, his oncologist must have SOME idea of what the maximum is likely to someone of his condition/stage, and should at least be able to give you guidelines. Is he on anti-cancer treatment (ie, reducing/containing the spread) or simply on palliative/best-supportive care? (ie, making him 'comfortable' - eg, painfree- but not actually doing anything to counter the spread of the cancer itself).

If he has dementia, it may be 'kinder' in the end NOT to have him on 'active anti-cancer treatment' if he is on such drugs (which are often very 'hard' on the system, especially the frail elderly), as to what purpose in dragging out a life which will only get grimly far far worse just because of the dementia.....(my 94 y/o MIL has deep dementia, immobile, in a wheelchair, can't talk, can barely recognise me, doubly incontinent - I pray nightly for her release from this hideous ordeal.....)

In practical terms of his care now, however, please do contact his local hospice. Increasingly, hospices offer 'hospice at home' care, and that can be excellent (they work in conjuction with the district nurses). However, it could be, given his fraily and your distance that actually going into a hospice as a patient/resident is the better option? That way he would be well looked after till the end does arrive????

One thought - If the oncologist says it's a matter of months only before the melanoma does its worst, would it be possible for you to talk to you employers to get unpaid leave of absence, and talk to your mortgage lender for a 'mortgage holiday' for the same amount of time (eg, six months??) and then for you to move into your dad's house and 'see him out'???? (Or, at least, to the point where hospice residential care might become necessary???)