Shambolic discharge from hospital

[Jothesquirrel]

My 85 year old mother has just been discharged from hospital after a 7 week stay following a fall. Before her fall she could just about get around with a walker and now seems to have lost all mobility. During her stay in hospital she contracted cellulitis, pneumonia, a UTI and norovirus, and has emerged weaker and much thinner.

The original discharge plan was for her to go to a cottage hospital for rehab, but then it was decided that she would make more progress in a home setting. She has carers that come in four times a day to give her medication, attend to her personal care etc. She is completely bedbound at the moment.

We were told by the hospital's Occupational Therapy team that the plan would be for her to have physiotherapy at home, provided by the community team, that as she has 'goals', a renablement team would be coming in to assess her progress, and that they would recommend a package of care and advise us of care agencies. We were told that the carers would be funded for 3 weeks (or possibly 6) and then we would need to self fund after that. I was told just before her discharge that there was no need to look for private carers yet.

The reality has been very different. The carers are fine but there has been no visit from the community physio team and when I chased this with the Urgent Response Team, not only did I discover that she hadn't even been referred to the community team, but that the carers are only coming for 10 days, not 3 weeks (let alone 6). They were very dismissive of my concerns and just said 'the hospitals often get it wrong'.

Is this typical? I'm really shocked that the carers are only provided for 10 days. We have been given absolutely no help at all with the next steps. My dad lives with my mum but is cognitively impaired and is not able to organise any of this. When she fell he left her on the floor for 24 hours, and didn't think to call anyone, not even my brother who lives 10 mins away, so he is completely unable to look after her.

I have arranged for two care agencies to come round next week to do an assessment but I don't want to rush into care that might not be right, especially when I thought we had more time. I'm also trying to find a private physio to get a realistic assessment of what progress she might be able to make.

I'm really angry and upset that we were told her best prospect of progress was a home setting when no effort has seemingly been made to enable this, and now we feel that we've just been cut adrift.

That's appalling OP. I would be making a formal complaint to PALS about this. Your DM should never have been discharged home when she's in such a frail state and to a home with a DH who is completely unable to care for her in her bedbound state. She should've gone to rehab for an appropriate amount of time to get her up and about again, not dumped at home with barely any care.

That's really shocking! I would be angry too

Ring your local Community Therapy Team and ask them to send some out.

This is awful, your poor parents. It sounds like the current carers are a bridging team who will hand over to another service after their 10 days. This is common in my area and I sometimes deal with them as part of my job.

What should happen is an assessment before they finish and allocation to permanent carers after this. It gives social services a few days to find a care agency to take over. If your Mum needs carers four times a day that can’t just end after 10 days, a permanent arrangement should be made.

Speak to the GP surgery and ask if there’s a care coordinator who can refer to the community physio. I do lots of these referrals and find they go in fairly quickly (usually within 10 days). That’s my area though so not sure how quick it is elsewhere.

It happens more often than you think, if you don’t mind OP what city are you in? Maybe able to signpost, if the care ends and you cannot get another one, you do have the option to send mum back to hospital and refuse her discharge until they can put her in reablement setting- your GP can also sort this depending on area but you don’t have to wait until the care ends if you feel it was an u safe discharge can send mum back in - you will need an ambulance and before anyone jumps in- it won’t be an emergency ambulance but she will need one as she will need a stretcher - hope some of this makes sense x

@WilmaFlintstone1 I was told that after the 10 days we would need to sort out our own care, not be handed over to another service. We were prepared to self-fund (eventually) but it's the complete lack of guidance that is so concerning.

i am sorry that sounds dreadful
can you sort out a rehab place for her yourself?

They are in West Sussex, and the hospital is East Surrey. I have written to her GP and will follow up on Monday.

I know I sound calm, but I am fuming and so upset on her behalf.

Yes, thanks, I am looking into that option.

West Sussex have a UCR team which is a 2 hour response for hospital avoidance, teams usually comprise of nurses/physios for urgent community physio ( it is a 2 hour response and will be triaged) if any nursing need the physios will refer mum to them too, I will add the contact number but referrals for this type of service usually require professional referral only so you can wait until Monday to see your usual GP or ring 111 and ask to be referred- if you explain mum is off her feet and bed bound they will triage accordingly- I will add the number here I found for the service but as I said it’s usually professional referral only : 0300 3737 111

good luck OP hope mum gets sorted x

Also to add- if the comm physio don’t think mums safe at home or needs more intensive physio there are usually community physio beds available in units which the physio can organise x

Thank you. It was the UCR that I spoke to and to be honest they were not helpful at all. I will follow up with the GP though.

Yes it’s probably because you’re not a health professional- but your GP can refer no problem, I think in the future it may be changing where patients and families can refer themselves but that talk is only in the pipeline x

@TwinklyRoseTurtle thank you - that's helpful to know

I've had similar experiences with mum a couple of times

The short version is, this is the way it is. I didn't even bother making a complaint.

Ironically, one time I took her out of the hospital and sorted out private care straightaway - and they kept telling me it was a problem because it meant she was being removed from the system. Actually, if you have funds, being removed from the system is the best thing that can happen.

I am not sure how much a physio can actually do. But the physio did turn up weeks later. That's obviously the state of their waiting list. So we didn't pay for private physio. But by the time the physio turned up, they just said she was fine and there was nothing they could do. She was still wobbling around with a walker, but that was actually progress for that stage.

Sorry not to have better news for you, but community care is pretty much non-existent. Especially if they are aware you've got funds. I don't mind paying for things. But I thought it was very odd the way they kept almost trying to warn us that coming out of the system was a problem. It isn't a problem because the system has nothing to offer!

Her GP didn't know anything about local services in the area. Have you spoken to adult social care? They seem to be the ones with the information.

I'm sorry to read this but not surprised. You feel like you've been misled, lied to, misinformed. Hoping you can make progress.

Took them two days to discharge my dad home because they hadn't arranged the oxygen team to fit oxygen units in his home at one point they tried giving his bed to someone else and sending him to discharge area to sit and wait fortunately a nurse intervened realising he couldn't sleep in a chair in his condition

Not the same hospital but my parent (lives alone) was discharged via the Hospital to Home Team and AgeUK. The former organised district nurses and physio the latter dealt with cleaning, shopping and transport but also provide carers- their service is free for 4 weeks and then they can recommend approved companies to continue provision for a fee. Does your Hospital have anything similar?

My late mum fell in her residential home and broke her hip.
She had dementia and wasn't able to understand any instructions about walking.
The hospital insisted that they were doing physio every morning.
Every day the nurse said she was tired after the physio. I kept asking if I could attend when they were doing it and was told no one is allowed on the ward outside of visiting. It was a Matron led ward and she was a stickler for rules.
After a week they were going to discharged back to the residential home and told them that she was walking around the ward with a frame.
I informed the RH that she couldn't get out of bed.
They went to see for themselves and they were disgusted to have been lied too.
The physio said they got confused with someone else with the same name.
Mum had a very unusual name and he then admitted that it wasn't worth doing physio as she couldn't understand what to do.
I got PALS involved and there was going to be an investigation.
After 3 more weeks she was discharged to a nursing home and never walked again.

The investigation showed a few issues but not serious enough for a disaplinary.
Hate what they did to mum and anyone else on that ward.

Something else worth noting possibly...

Physio doesn't really amount to much. I don't blame them for that. In fact, I wonder if they are being set bonkers targets because in my mum's case she was 84 and too frail to really do much. But I think they get set really stupid targets. With my late father, they wouldn't admit that he was dying at one point - bizarre - and a physio came round every day to try and get him out of bed. I had to basically tell them to stop harassing him. Meanwhile, there will be other patients in the hospital who really needed a physio.

I just see the NHS as being a vortex of insanity now. I think the staff suffer with this as well. They can't keep up with the constantly shifting bureaucracy.

Unfortunately I think this is not untypical. An elderly family member was discharged without notice or checking partner would be home when they arrived. In fact they went to the ward to visit only to discover they had been discharged and had to rush back home. They too are bedbound, eventually had a hospital bed and aids delivered after OT home assessment , but after six weeks the funded carers stopped and they have been left very much to organise and fund care themselves. No physio, no slt, no reablement and minimal nursing input. Social care is appalling now.

as an ex rehab/older adults physio, please complain! it's disgusting .i'm fed up of families and patients being effectively lied to as regards future care in order to get people out of a hospital bed. trying to get someone elderly in poor health mobile again when they are bed bound involves a lot of hard work by staff and patients.i have managed to get certain people mobile again once in their own home but this is when they live with family who are effectively able to be part of the rehab team . Community rehab services are as shambolically underfunded and under staffed as the rest of the nhs.

I feel for you. I'm a carer for DH. He was in the acute hospital, discharged to community hospital. They want to discharge him but a close relation has just died so basically I'm not here. They said carers four times a day, but with his mobility issues it wouldn't have been safe. So he's going to a respite care home for three weeks, funded by NHS. I found out two years ago, when DH was sent straight home, that they just want older people out and you have to tell them the reality of the situation. If I had known then what I know now I would have insisted then on a spell in the community hospital. Homecare is not adequate in many circumstances.

The trouble is the people most affected are the least likely to complain, due to their vulnerabilities and stoicism. Dh was in rehab for over a month before discharge home. Promised Physio at home several times a week which was actually fortnightly then monthly at best for three months until he could be driven to them. There is a huge disconnect between identified need and the reality.

I think the issue is one of managing expectations. If they were honest with us and said that physio would not be helpful in her case and that she wouldn't be mobile again, we would have accepted that and worked with it. It's being promised one thing and then being delivered nothing that is so frustrating and difficult.