Hospital want to discharge - what do I do?

[MereDintofPandiculation]

DF has had catastrophic decline over last couple of days, is non-ambulant, and has other symptoms not normal for him. He lives "independently", no carers coming in, no cleaner or help preparing meals. District nurse service OT on routine visit on Thursday decided he wasn't safe in home, couldn't contact GP, and therefore called ambulance, and he was admitted to hospital.

Despite the catastrophic decline, hospital are of the view that there's nothing wrong with him and wish to discharge home.

So can someone remind me of what I need to do, and give me the terms I need to ask for?

I know we need to ask for an assessment of his care needs before he's discharged - what do we need to ask for to get this? Also a CHC assessment (Continuing health care?) but if hospital say there's nothing wrong with him, this is a non-starter, surely? Someone on another thread says he needs a reablement/rehabilitation package, and this I think was what the OT was after.

What if the hospital suggest he goes into a nursing home/care home for rehab - is this likely to become his "forever home"? Is it a hidden trap, and something that should be resisted?

I'm thinking of ringing the OT and telling her hospital want to discharge home - she'll go ape-shit. Is there any reason why I shouldn't ring her?

I'm also thinking of asking his GP for advice (DF has given them permission to speak to me)

I'm sorry you and your DF are in this stressful situation. It does sound like he should be in a care home rather than a hospital. I hope you find a solution soon and you can relax a bit and focus on spending time with him.

It does sound like he should be in a care home rather than a hospital. I'd agree with you if it wasn't for him having suffered a catastrophic decline over a matter of a few days.

hi Dint

ring the OT for sure, you need forces on your side.

do you already have contact with Adult Social Services? If not, I would give them a ring - might have to be Monday - and make them aware of the situation.

other than that, it's resisting the discharge and saying he has nowhere to go.

if they find a home for him to go to, I think

I would contact the ot and gp. There should be a plan for discharge - possibly involving hospital social worker. Good luck dint. Hospital won’t know how your df was before his admission.
Rehab could be a good option- care to help him regain his mobility etc. It doesn’t mean forever- check what physio etc is provided.

So hospital are telling you he’s fit for discharge which basically means they need the bed and he’s as “fit” as they can get him.
His current needs do sound quite high and I would be inclined to say a period of respite in a residential home may be a good option and certainly doesn’t mean he can’t go home eventually if his needs can be met in his own home.

Does he have savings above the threshold? If so then he will have to fund his own care so I would say find a home who are positive about working with him/you to promote independence and reablement. Some homes even offer private physio included in their fees or this is something you can arrange yourself and can be so helpful in my experience.

CHC is probably out - is he living with dementia? I’m a residential care manager and we very rarely get CHC funding for anyone these days apart from those with very complex needs at the end of life stage or very advanced dementia with challenging behaviour.

sorry, cut myself off there!

if they find somewhere for him, then I think that's fine, it gives you a breathing space for a longer term solution.

in the very early days of dad's illness - months ago - we didn't know what was going to happen and I had to gather all this info. Adult Social Services were actually really good and allocated it a case number as soon as I reported my worries, so the idea was the if the hospital tried to discharge him, I'd go forward and give them the case number so they knew it was already in the system and that social services were on our side, so to speak.

if there is nothing the hospital are doing medically, that's when they will say that he is better in a rehab facility. I'm not aware of any traps - we were actually encouraged to use that option if it happened.

however, if you think moving him more than once is going to be a problem, then you might want to sort out wherever you'd want him to go immediately, if that makes sense.

has he regained any mobility? I think that's the key issue with hospitals trying to discharge patients.

Before you worry about care homes or care at home, you need to know why he has declined. Sudden decline to non-ambulatory would normally be caused by an infection. Has he had his bloods tested and what are his inflammatory and infection markers like? Has he had a urine test? Is he dehydrated? These are all the questions you need to ask and demand answers to. You also need to demand to speak to the doctor/consultant in charge as well, stand in front of them and say very firmly ‘he is not like this, he has declined enormously in two days, therefore there is something medically wrong and it is your job to find out what.’ I have just had exactly the same fight for my mum. It’s taken a month and three wrongful discharges, but the last time I made it absolutely clear that I wasn’t taking any more crap, that they needed to figure out what was wrong and fix it, and lo and behold, she’s been properly diagnosed with joy one but two antibiotic/resistant bacteria, and given the proper drugs to treat them, all while being dehydrated and having her cellulitis and leg ulcers properly cared for. You have to be his strongest advocate, and be very clear what you expect.

He must have a diagnosis, ask why has he declined so quickly and what his prognosis is and likelihood for improvement. Call the o,t, and say they feel he can be discharged, they should already know, most wards now have delayed discharge meetings with o,t, physio, nurses and social workers. He should have a capacity assessment to see how much he understands about his condition, the ward can complete a chc assessment, it's based on care needs not his financial situation, you can read a blank one online to see what it involves. If they think he has rehab potential they could transfer him to a community rehab bed, if not then maybe a carehome would be best, I think he's entitled to 6 weeks free care after discharge. The alternative would be a home care package, usually a max of 4 visits a day but the o.t. Would need to go to his house, assess the environment, order equipment, social services would need to get involved in finding carers. He is entitled to a care needs assessment, sometimes it's done on the ward but can be done in the community bed. Some hospitals have bought community carehome beds for people to go to for a few weeks while permanent plans are put in place. Do you have power of attorney for him. If he is not safe to be at home then the hospital social worker can speak with the delayed discharge worker, if you can do try and speak to his doctor about his sudden deterioration.

Thanks everyone, that gives me a lot to process, but I know my next steps. Going in to see him today with DS2. Not high hopes of getting sense out of medics - he changed wards yesterday and new ward don't seem to be planning to "review" till tomorrow.

Hard to know what to prioritise - researching care options or visits to hospital with 3-4 hours return travel. Today will concentrate on visit, tomorrow need lots of phone calls as well as visit, so can't get back to sort his house till Tuesday, and I've still got Christmas to get on the road. And an AGM to chair on Tuesday. I'm glad I'm not working.

the hospital should have some care home info

when you say sort his house, do you mean in case he goes back there?

I wouldn't worry about Christmas, but that's just me - I don't know what your situation is with DC etc.

Be careful there isn't underlying assumption you will be around to help day in day out. If social services have an inkling of this they will leave you to it. Set your stall out clearly early on, even if this means stating that you will be providing no input whatsoever. Who will be doing his shopping, cleaning, food prep, appointments, toileting etc et for example? It sounds hard but be realistic, and much easier to accept all help now and reduce it later on than the other way round.
Many elderly people refuse help because they don't want to pay, but as the 'rainy day' has now arrived, I would say this is the time to utilise funds I find that's what's needed to prioritise his long term safety and your mental health. Many years as a district nurse has shown me the pitfalls of people defiantly struggling along at home and in and out of A&E like a revolving door. Be realistic.

Doctors don’t do official reviews over the weekend, only emergency interventions, it’s mainly nursing care. They do reviews in the morning, so I would get yourself there for 8.30 if you can get, bring a book and be prepared to stay until about 1, depending on what end of the list he is on. Write out your list of questions and concerns, and bring your game face. Alternatively if you really can’t be there, and he is with it enough, then get him to phone you on his mobile (assuming he has one) and put the doctors on. I did that with my mum on Monday when I had to be at work and the doctor was happy to have a discussion over the phone.

When my mum was in hospital after a fall (turned out to be the lingering effects of gastroenteritis, a chest infection and UTI on top of her other health issues) the ward were very quickly talking about discharging her, partly because mum was insisting she wanted to go, but she was clearly too weak and frail to be safe alone.

The hospital were making assumptions that she had sufficient backup in place at home and spoke at one point of sending her home in a taxi!

I found I had to quite pointedly ask them who would be doing all the various necessary tasks to keep her safe. It was quite horrible to have to say to the nurses and SW “My brother and I are not, and cannot be, her carers” and “If you discharge her today we will not support this because it is unsafe”. The one that worked was “I find it astonishing that you have assessed the risk of her being re-admitted in a couple of days as being low”. Unsafe discharges = bad stats.

Interestingly, the doctors were the ones acting most in mum’s best interests and in the event did not discharge her for another couple of weeks.

In the end we found some private respite care in a local residential home to get mum back on her feet. She then went home with private carers (the social worker tried as hard as she could but there was no suitable package - mum would have been alone from 7pm to 11 am) but the whole thing repeated itself.

She’s been back in the same residential home since February and decided to stay permanently. She’s quite well, is being properly fed and medicated and has made some good friends. A GP (very on the ball, very kind) visits every week. The carers are lovely and the manager is fabulous. Mum and I get to spend time reminiscing, going for wheelchair walks and visiting garden centre cafes. It’s not what anyone really wants, but it’s the least worst option.

I should say this is all self funded - fortunately she had some savings and her house is worth a reasonable amount. Her SW’s preference was to keep her in her own house with a (in my view) inadequate care package, and we were told if she wasn’t self funding she wouldn’t be eligible for LA funding. So, depending on your LA, you may find that a care home is only an option for respite and your dad will be expected to go home anyway.

I hope today goes OK. It’s really, really hard and I do feel for you. Someone I know actually hired a private social worker to be her parents’ advocate, because she lives too far away and is in poor health herself. That’s out of reach for most of us, but is worth thinking about.

My priority list would be

1. get a clear understanding of his finances, including starting the POA process if he's willing and able, and make sure he is on board with spending it. If he's self funding you have more choice but more work to do. You may need lumps of money fast too.
2. start researching homes that offer respite care, with and without nursing care (as you don't know yet if he'll need it) - if the hospital can't do anything more for him they will want him out, not only because they need the bed but they know very well that people decondition in hospital faster than pretty much anywhere else. Consider homes near you as well as homes near him. If he has no dementia focus on ones with lots of other non-dementia residents and where the food is decent. It won't have to be his forever home.
3. at hospital badger for sensible diagnosis of his decline so you have a better understanding of what his recovery is likely to be

Good luck!

Tell the consultant (& make sure you speak to them, not an underling) that he has declined dramatically to non-ambulatory within days and no-one has told you why. Say you believe such a fast decline is medical and if he is discharged without proper investigation and worsens you will be holding them respindible.

Get onto social services & the OT.

And what Janet said. Tell anyone who is trying to discharge him that unless they find out what is wrong, treat it and he improves to where he was then he is not safe to be discharged until there is an appropriate care package in place.

But I would really want to be satisfied they have properly investigated what is wrong with him. If you happen to have a video of him that shows what he was like before the decline show the consultant (or a registrar at least). I have found over the years doctors believe videos more than words. I expect they think he has been like this for ages and are not considering the speed of decline because they want the bed.

The hospital saying 'medically fit for discharge' isn't the same thing as them saying he's ok to go home.

As a social worker I often get panicked relatives on the phone saying that the hospital are trying to discharge but what it actually means is that the hospital feel there is nothing they can do medically at that point in time and it's over to social care to sort out a discharge assessment.

However, if you also told me what you had said above I would be on to the ward fairly sharpish challenging why they felt he was medically fit, it's pretty common for one health professional to say 'MFFD' and the next one to come along says the opposite.

It's also not unheard of for ward staff to 'guess' that the patient will be medically fit for discharge in a weeks time and send the paperwork through early to social care in the hope of queue jumping social work discharge assessments. Most times this just ends up panicking relatives and annoys the social work team.

Providing they aren't actually attempting to put him in a taxi home I wouldn't worry too much just at this point and let the assessments that need to take place occur. The hospital discharge team will tell you what the available options are.

Grace Christmas is important to me - I'm not letting this trash the whole of my life! Besides, Dad will be out of hospital by then, so somehow or other we'll have to work out how to include him in Christmas.

PoA is in place and I've been administering some of his money, so that's not a problem. He can't realistically manage a mobile and will probably lose it. It takes me 1.5-2hrs to get to the hospital as it's the far side of the city. Not much quicker by car, and it just adds stress to me - busy city roads, one way streets, limited parking etc, so prefer to be slower and less stressed. It's not just me - 30yr old DS has refused to drive as well.

Rather alarmed that the full info I gave to a doctor yesterday about the reasons for his admittance and the rate of decline do not seem to have made it on to his notes.

Monday morning I was going to ring GP, OT and anyone else, so that precludes me getting there in time for early morning reviews (I wouldn't be welcome either - visiting time starts at 12.00) - is it likely to be possible to speak to consultant any other way? Or do I need to turn my timetable the other way up and postpone the phone calls?

Ah, if Xmas is important to you it's different - I thought that maybe you felt obliged to do stuff.

re the timings, I have been in the hospital from 8.30 till 1 for the exact same reason on a day I thought dad might be discharged. Technically it wasn't visiting hours but when I arrived I said "I need to speak with the consultant urgently as I'm worried about discharge" and they let me in.

The polite way to speak to the consultant is to ring his/her secretary and ask for an appointment. The stroppier way is to be assertive while you are there

Note I am not advocating one way over the other, although I feel more comfortable with the secretary route first if all. Or email if you get the email (or the secretary’s). I don’t have an elderly reletive by so have a now adult severely disabled child and one thing I have had to learn is that it is perfectly acceptable to be assertive and insist (politely) on speaking to people you need to speak to. Indeed it is your role as someon’s advocate.

It sounds as if you need to urgently speak to them to ensure they are aware of the rate of decline and you are confident in any decisions they have madez

Tell the ward sister today that you want to speak to the doctors in person tomorrow before any decision is made. Tell them you’ll be there at 9. Do your calls later - if you can convince them he needs medical treatment, then you don’t need to worry about social care yet as he’ll be staying in..

It's not unusual for information to be left out of medical notes, it can depend on what the patient told them, the o.t. told them and the doctor making the notes. The o.t. may be in a ward meeting early morning, it might be worth calling the ward and ask to speak to the nurse in charge, ask what time the doctor will be visiting and will they be discussing your dad in the m.d.t. meeting. With luck she will give you some idea of when it would be best to visit, it might be that he is seen by an o.t. physio and junior doctor first. It's a good idea to ring the consultants secretary to make an appointment to speak to him, often it can be away from the ward or they ring you back, they don't always visit the ward every day and being there at 8.30 may be a lot of sitting around . If they say they are sending him home you can say it's unsafe and you will not take responsibility, his house is unsafe and he cannot manage, there will be a delayed discharge team who may well be involved, this is often run by a senior nurse who has a lot of experience in this. Do you have p.o.a. for his health and welfare, it would be worth asking the nurse or doctor if he has had a formal capacity assessment so see how much he understands about his care and his needs.

Do ask the doctor why they think he has declined lime this, tell them how he was before and the changes you see. Ask what investigations they have done, is this a temporary condition or permanent, is he likely to improve. Does he want to go home or would he feel happier in a carehome.

Is the OT you are ringing the community OT? She might not have much say in hospital discharge. Ask today for your Dads nurse has he been referred to hospital OT,physio and social work and if not ask them to do it today so the 3 disciplines have it tomorrow morning. Then ring the ward tomorrow to find out who the sw is,have they seen your dad yet and are they available during visiting hours to discuss. They will likely get the outcomes of both the OT and physio assessment and have some sort of plan in mind. Also a rehab unit will not hold onto him forever they will also arrange discharge when he is fit enough through their eyes ie mobility etc. Good luck

Seen DF today - quite understand why they want to be rid of him! - he's lucid, chatty and cheerful. On the plus side, come of his symptoms have subsided, but his mobility is still a problem. He has a single-bed room with ensuite accessible toilet, which he can reach by walking around the furniture taking half his weight on his hands. He has difficulty pulling his pants up after the toilet because he cannot stand without using his hands.

He was very worried when I arrived because the pharmacist had told him he was going home today. Then nurse in charge came in and said he would be there at least till tomorrow. I've gone through with n-i-c both the events that led to the ambulance call, and a description of his normal state (eg a description of his outings and activities in the two weeks prior to his decline), then gave him a written copy which has gone into DF's file.

N-i-c has given me consultant's name and a telephone number and suggests that I could speak to the doctors tomorrow at lunchtime. He's steering me away from trying to speak to consultant "too busy for appointments with relatives". We will see.

They are not giving Dad any information - blood tests were "just routine" when he asked.

Good that he is cheerful
Hope it goes well tomorrow with the planning