Friend of mine's wife terminally ill. Hospital won't let her go home yet.

[Swashbuckles]

It has been 'okayed' for her to go home. All the medical equipment is set up ready for her to have palliative care at home.

Plan in place.

BUT the hospital are saying that because of covid, the carers they allocate are not available, a lot of them off sick or unable to work the shifts required for wife's care. He is certain that they're essentially awaiting someone on the ward to pass away so that one of them is made free.

My friend is desperate to have her home, and wife is miserable in hospital and has stopped eating, is very listless and just wants to go home.

I've suggested he speaks to his GP about it-is there anything else that can be done?

I am not knowledgeable about this sort of thing at all, but he's desperate for help and I thought it may be worth asking here.

I would complain via PALS - the hospital will be able to give you their number. In a different situation they were very helpful when my dad's hospital care was lacking. Is there any hospice involvement? Or if she has cancer is there a McMillan nurse? I hope she gets home soon

I am sorry this is happening to your friend and their wife.

The community care teams are not the same as the ward teams. When my dad was recieving end of life care it was really intensive with a team of 3 people at the house. They were really short staffed so if one of the team went off poorly my dad would have had to go into hospital.

You are right in that another patient dying will free up capacity, but that doesn't mean that a person off with Covid has not caused the punch point.

As a GP myself, I doubt the GP will be able to help - this isn't their decision and at this stage has nothing to do with them. The time to involve the GP is when she is discharged home IMO. I agree with PP about speaking to PALS - or your friend could raise his concerns to the ward manager. Hope it gets sorted.

Have you tried nearby hospices? They sometimes provide care in someone's home. The other possibility is paying for private care if he can afford it?

You could talk to PALS but unfortunately they can’t magic up careers if their are none. Could he pay privately for a short time until some are available- just to get her out of hospital? Does he have friends/family that could help? If her prognosis is quite short that might be the only way to get her out quickly to die at home. So sorry for him, it really is sad

The trust i work at does have different teams which get people home - Early Supported Discharge for stroke, Hospital At Home for general medical - but often the teams who do community work are under a different trust.

It sounds like the team that she's been referred to are struggling - Covid sounds a very plausible problem, our teams are struggling too. Things may improve as the school holidays end in a week or so?

It might be a good idea for him to talk to PALs and get some ideas - maybe another team could get involved, maybe the community palliative care team or a social worker. He needs someone to translate it all for him.

I’m sorry to hear your friend’s wife is so poorly and home she can get home as soon as possible.
Few points. For adults with capacity there is no such thing as a hospital refusing to let a patient home. It’s a hospital not a prison. She can self-discharge at any point she desires, however if she does so she runs the risk of not having a package of care in place. If she self-discharges before the POC is ready it now longer becomes the respondent of the hospital to organise and would then be up to social services to arrange. Likely long, long wait then for assessment and organising care.

So if she can hold out until carers are available it will enable her to go home with support for all her needs.

The carers are unlikely to come from the ward and will be resourced from another discharge team within the hospital. If it’s anything like the team I used to work alongside they are always overstretched with patients having to wait days or weeks for care provision, particularly if it is intense and requires two carers at a time. Covid and school holidays are only going to make this worse.

Things to suggest to your friend:
Is she so unwell would she trigger for CHC end of life care? It’s a different pathway and can source carers more quickly, but only for patients who are likely to die very soon.

Can your friend and his wife discuss with the discharge team what the POC is they are requesting. Can it be reduced? Going from two to one carer, or from four to three visits a day can make all the difference to sourcing carers. Has she had an OT assessment. Is there any suitable equipment that could support her discharge?

Ok I work in a community team that would oversee this kind of discharge. It is very true that there is huge lack of capacity now with care providers. Have your friends approached different care agencies? If they can pay private and have carers in place themselves that may help with a faster discharge. Speaking with A Social Worker may help. Also is she under a local hospice? Many of them have a Hospice at Home team who can provide care calls so could be worth a try.

What a terribly say and difficult situation.

Agree with pp, but will add if she has cancer then macmillan may be able to help?

BUT the hospital are saying that because of covid, the carers they allocate are not available, a lot of them off sick or unable to work the shifts required for wife's care

this is the reality of the care sector at the moment. Neither the GP or PALs have any power in this situation, there are just not enough people to go around to do care jobs.

I can guarantee the ward will be feeling just as frustrated and sad about this as your friends. They really really don't want people in hospital any longer than they need to be there.

then situation in the community is even more dire. In my local authority we have people on waiting lists for carers, we are literally waiting for people to die or go into hospital to free up care for other really vulnerable people. Those that go into hospital can't then come out again because their care will have been given away to someone else.

it's really really shit OP but the hospital aren't doing it because they can't be arsed/ don't want to fund more carers, there will genuinely be no more people left to do it at the moment.

fingers crossed the staff off sick will be back in work soon and she can be discharged then.

Thank you so much, I didn't realise so many people would respond.

I've called my friend back and given him all the advice given here. There isn't a Macmillan nurse, they could possibly afford private care for her however I think he's obviously reluctant to relinquish the care of the hospital which is understandable.

@hatgirl thank you for the long post-it really is a horrible situation isn't it :( overall I mean.

@RingBinderInjury thank you again for taking the time to write that, I have suggested he contacts CHC to see if they can help too and/or to discuss the plan with the hospital.
I have to go to work now but thanks again everyone for caring enough to respond. I do feel so sorry for everybody and anybody in this sort of situation.

I'm wondering if the wife is fast track CHC which may complicate the paying privately aspect?

We had similar with my mum and that was well before Covid. The hospital asked 14 companies to provide carers for mum at home and only one had capacity. We were lucky that they were superb but it was extremely stressful, particularly as mum had been given a fortnight to live at that point and she really wanted to be at home. She hung on for several months in the end, which meant those carers were tied up for longer than originally planned.

It's a dreadful situation, OP - your friends have my every sympathy. We tried Macmillan but got nowhere with them.