MIL discharged from hospital, still medically unwell - what to do?

[Lottapianos]

MIL is generally in poor health. She was admitted to hospital 3 weeks ago after presenting at A&E with what turned out to be type 2 respiratory failure. They were querying COPD and she had a lot of respiratory assessments, most of the results improved over that 3 week stay.

She has been discharged with no diagnosis, and an outpatient appointment in 2 weeks. She's still very breathless, spends most of the day asleep, and her appetite is poor. She is also really struggling with independent living skills e.g. can't stand unaided for more than a minute or so, and has little energy or enthusiasm for anything. She currently lives alone as her husband is in hospital, and is even less independent than she is

I'm not impressed that the hospital discharged her in this state. I spoke to the ward every day and explained how worried we were about her home situation. Her GP has been bloody useless and I'm worried this respiratory appt will just be a load more shrugging and we will be no further on

Please share your thoughts on what to do next. ILs live in Cornwall, we're with them for next few days but we live in South East. Ta

I could have written this OP about a family member. I have no advice but sending my best wishes, it’s tough!

When was she sent home? Was it today?

I had a similar scenario with my Dad in the winter - he had refused any contact from social services which is how it happened . I was assured that it wouldn’t just happen but it did ..by taxi in the dark without a set of house keys , and me some 5 hours away . I’m sorry OP .. I’m afraid I also don’t have any answers other than to call social services yourself

Was she sent home suddenly or was she discharged following refusing to have support from the discharge team? They can't force them to have carers and I've had several circumstances where the person knew the discharge date and claimed to the hospital their care was sorted when in reality they expected family to do it

Call adult social services at the council and tell them she cannot live alone, if she refuses to engage they will need to do a mental capacity test

You need to contact her GP to ask about follow up and say she is still unwell. Then contact social services for a care act assessment to consider the independent living stuff. Those two calls will start process of accessing support

I'd take her back in through A&E. That was an unsafe discharge.

Just gutting to see how many people on this thread have had similar experiences. She was discharged on Friday. She's very passive and very poor at asking for help, so may have told ward staff that she lives with her husband (not saying how ill and infirm he is) and was happy to go home

I'm taking about meals on wheels and getting a cleaner, and she's interested in those suggestions, but I feel we're beyond that level of care really. Also the situation with FIL - what state will he be in if / when he comes home?

GP sounds like a reasonable place to start I guess, so will help her to make an appointment tomorrow. Will ask for social care referral while we are there

How old is she? When my elderly relatives have been discharged from hospital they have had six weeks of carer visits (4 visits a day) to help with personal care, changing dressings preparing food etc. They then advise whether a permanent care package is needed. I would contact Adult Social Services and ask why they have not provided this. Do they think that family are providing care?

@MinervaMcGonagall45

How old is she? When my elderly relatives have been discharged from hospital they have had six weeks of carer visits (4 visits a day) to help with personal care, changing dressings preparing food etc. They then advise whether a permanent care package is needed. I would contact Adult Social Services and ask why they have not provided this. Do they think that family are providing care?

They may not share that information with you though, does MIL have capacity? What is she saying about what she was offered/what was discussed when they talked about going home? It is quite, frustrating is probably not the word I'm looking for, when it's always the ward staff fault when someone declines care/assessment for discharge, but if they have capacity, they can't be forced to take any support, and l know how frustrating it is then in turn for the family!

Update - she's back in hospital. Had a fall this morning, paramedics came and took her in. Very glad from a medical point of view, but worried about what this means for care when she is discharged. We had a home help agency ready to start visits 2 hours a day in a week or so, not sure now if that's going to be enough. Will wait for outcome of OT assessment in hospital I guess

IME whilst they are in hospital, refuse for her to go home without a care package or plan in place. All the time she is discharged and at home it’s much harder to get anything done or anyone to listen x

Do not allow her to leave hospital without a care package in place. Make a fuss, keep emphasising her issues, ask for the support for her, ask for an adult social worker to be assigned to her and FIL, make sure they know about FIL and his issues, make it clear you live hundreds of miles away.

Great advice. I'm on it!

Had similar with my mum.
One day she had all sorts of tests due, the next she was discharged, in a worse state than she was when she went in.

It bloody infuriates me!

It's bloody irresponsible Morrissey (great username!). Am wiser this time around and will be emphasising at every opportunity the importance of a proper care plan, and how we are simply not around to help

Surely she would not be discharged with no diagnosis. She's had investigations and treatment for something. There will be something written on the discharge summary. Are you sure it's not just that it was explained to her and she's forgotten and not passed it on to you?

This time call the ward and ask to speak to the consultant. They might not be able to speak to you straight away but leave your number and ask for a call back and they should be willing to explain to you. Would also be a chance to explain about home circumstances.

The likeliest things are pneumonia, COPD exacerbation (smoker or ex smoker?) or heart failure. Some of these might not be amenable to a full cure.

I'm afraid people are usually not discharged home perfectly recovered or with everything sorted out these days as there just aren't enough beds. They might need to recover at home a bit but usually they would get a reablement care package free for up to 6 weeks or if not age with that then a temporary bed in a care home. If she didn't it will be because she probably said she could cope and they believed her.

This will be classed as a failed discharge now which the hospital gets penalised for so likely they would give more support next time. Do ring and press the case though. Ask to speak to the consultant and/ or the discharge planning team.

My mum could do nothing for herself, and it ended up in a trip back to a and e a day or two later.
Then we were told that because she had been discharged, she didn't qualify for the 6 weeks of care.

They did it to my Mum too and afterwards we got a lot wiser. Discharged her home unable to manage stairs to a house with her bedroom and the bathroom upstairs and kitchen/living area downstairs. I'm a doctor (but don't work in a dishcharging patients home specialty) and was really shocked when it happened.

It's a combination of factors - pressure on ward beds, naive families and patients not speaking up/ admitting how limited they actually are. I've since watched my grandfather aided and abetted by my aunt present a totally false picture of his abilities to the geriatricians. Fortunately I'd insisted on going on that appointment and was able to challenge that what he was describing was actually a "best day" scenario not an everyday scenario. He got a good care package and trundled on at home for quite some time.

Insist on a full assessment before she goes home. Phone and speak to someone registered ( member of medical team, OT / Physio or nurse) about the home situation and FILs dependency, stressing your concerns. Ask that they ensure they document the information in the notes. Follow up with the name of the person you spoke to via email/ in writing to her consultant.

Be warned it can get messy - my Mum got readmitted as she fell at home shortly after discharge from hospital and we ended up in a horrible stand off with the staff as my Mother was desperate to get home and totally unrealistic about what being home would involve and how much help she would need. She just kept telling the staff how much she wanted to get home and of course they felt really sorry for her.

The rest of us were not so enthusiastic having been railroaded into being unpaid carers for year and declined to support the discharge/ collect her. It didn't help that my Mum had been refusing stuff that would have helped for years (blue badge/ wheelchair/ stairlift) and had made some catastrophically bad calls e.g falling while my Dad was out, injuring herself really badly (open fracture) and then didn't call for help appropriately so lay on the floor for hours with her tibia sticking out of her ankle covered in pee and poo. She had her mobile in her pocket but didn't think to phone anyone..... instead she texted my brother who was out on the piss and didn't get the message until hours later when he emerged from the basement bar he was in. By which time my Dad had returned home, found her and called an ambulance.

As a family we were consistent that she could come home when there was a care package in place to enable her to be home safely without enormous input from us. My Dad said he would continue to provide meals and help with morning and evening ablutions but was no longer prepared to help her up and down the stairs as he felt it was unsafe for him.

The whole thing got really messy and it was quite distressing how little my Father's feelings and safety seemed to matter.

@FedUpAtHomeTroels

I'd take her back in through A&E. That was an unsafe discharge.

I was going to say that too as I could have written OP's post earlier this year.

We had an unsafe/failed discharge with my 87 year old Dad who was in a similar condition to OP's MIL. He had COPD which had been exacerbated by a serious chest infection (bilateral pneumonia), became unable to walk while in hospital due to being unable to get out of bed and was simply discharged home. Still very unwell and now newly immobile. We could do nothing with him even with the help of his carers and it was extremely traumatic. He couldn't cope and neither could we. Couldn't move him much, couldn't change him, couldn't get him to the toilet etc. All dignity for a once proud man was gone.

We were referred to the adult social services crisis team, he deteriorated more and more, his pneumonia and COPD worsened again, he had dreadful pressure sores and we had to have him readmitted to hospital. Unfortunately, he didn't recover. Maybe he would have had a better chance if they hadn't made the unsafe discharge and had sent him to an assessment facility, which they were originally going to do but suddenly didn't. We'll never know now.

Inform adult social services. They may send a crisis team out. They may want to get her readmitted to hospital, and you may have to be persistent there, calling the ambulance as many times as necessary. That was what we had to do until we were eventually taken seriously enough.

Everything @MauveMavis has said, although my parents house (now just my mother's house) is a bungalow and managing my Dad was still impossible.

Keep on to the hospital every day. Refuse to hear the word discharge. Insist that she is not safe at home, can't get around it, can't prepare food, can't get to the toilet and that there will be NOBODY there for her. DO NOT offer to take on any of it or she will most likely drop out of the system again with nothing and you will all be screwed over again. They should only discharge her to an assessment facility (a process known as "discharge to assessment" if my memory is correct). There her needs should be properly assessed and she may even receive physiotherapy to see if it is possible to get her back on her feet to any degree or not.

Sorry you are in this situation. It is utterly shit but it happens far more than you might think. Unfortunately I cannot emphasise strongly enough that you must not accept her back home or facilitate discharge in any way.

Sadly, this is the only way to kick the system up the arse, otherwise neither your PILs (both of them) nor any of the rest of you will cope. I do remember just how dreadful it felt as it was only in March this year that we were in the same situation. It is all totally unfair, cruel, traumatic and it feels brutal. We hated it and will never forget it.

Keep strong. Handhold from me. I hope you can get something suitable sorted out soon, but it is a bumpy ride and can be overwhelming.

I'm afraid people are usually not discharged home perfectly recovered or with everything sorted out these days as there just aren't enough beds. They might need to recover at home a bit but usually they would get a reablement care package free for up to 6 weeks or if not age with that then a temporary bed in a care home. If she didn't it will be because she probably said she could cope and they believed her

I'd really like to say that that is the case. Maybe it happens sometimes, but it just wasn't our experience with my Dad. They were going to send him to an assessment facility but then just didn't. I was at their house with my mother (herself unable to walk more than a few steps) at the time and one afternoon we simply got a phone call to say that he was in the ambulance on his way home!

He had told them in the hospital that he feared not being able to cope and we now know that he hadn't been able to walk at all on the ward.

There was no reablement package at all. It was very distressing, especially for him. He deteriorated seriously again, was readmitted to hospital and despite rallying a bit there, he didn't make it.

Thank you for the recent very helpful comments. She absolutely cannot be discharged without an appropriate care package, and I will be making that clear every single day on the phone. We are not there at the moment (back home in London) so there is literally no one at home to care for her. Neither of us are in a position to take on any of her care, and I'm much wiser now after her previous discharge. I'm prepared to argue with the hospital if necessary. Thanks for the solidarity too x