Accommodation dilemma

[LooneyLuna]

Hi. Just looking for some advice please? My brother (50yrs old) suffered a massive bleed on the brain caused by stroke. He has been left mentally incapacitated, no speech, complete right sided paralysis so is wheelchair dependent and incontinent. He isn't progressing so the hospital are saying that he can be discharged home. However, his partner has MS and is unable to provide any care. He can't do anything for himself apart from eat if his food is cut up for him. We have been offered the maximum care package of 2 carers 4 times per day. However thats still 22hrs of the day being with his partner who can't care for him. If he wets or soils himself, she wouldn't be able to change him. He would need to wait until the carers came back hours later. If he is sitting in his wheelchair but wants to rest on his bed, he couldn't as every transfer needs 2 carers to help him. Is this acceptable or safe, just to get him home and out of hospital? Any thoughts would be gratefully received.

[New_beginning]

No the social care assessment needs relooking and appeal decision based on care act. His social care needs, need to be met for personal care, daily tasks like prepping food, eating, looking after home ordering own medication, accessing the community 2 hrs per day will not meet his needs.

Contact Headway helpline for advice.

[LooneyLuna in reply to New_beginning]

Thanks for replying. There's not been a social Work assessment been done as far as I am aware. The hospital told me and SW that his care needs don't warrant a care home but he can be discharged home with the full care package. That's fine if he has a capable partner that was able to provide some care but he hasn't unfortunately. I just feel like I am being railroaded into agreeing to allow him home as this is the cheapest option for them. As he is incapacitated and has no POA, I am applying to be his guardian.

[Painting-girl]

Hello LL, it sounds like your brother is in a very difficult situation - I've just read your post on the stroke forum. I agree with New_beginning - it would be good to ring Headway 0808 800 2244 and get some advice to have another conversation with his SW.

I applied to the Court of Protection for my uncle when he became mentally incapacitated, it's a pretty slow process, but it works eventually. It's not that easy, but it will help.

Good luck with sorting this out for the best for your brother 🌸

[LooneyLuna in reply to Painting-girl]

Hi PgI'm planning on speaking to his SW tomorrow. It's really worrying me so I need to get a plan in place that makes sure all his needs are met. I don't think they are realising the ins and outs of my brothers situation, even though I have told them my concerns over and over.

[Painting-girl in reply to LooneyLuna]

No, it doesn't sound like it - do they offer you any other option other than sending him home? Surely the SW won't want to put him at risk.

Have they stepped in as his guardian until you get through the Court of protection application? I didn't have any say about my uncle on hospital because he didn't have an LPA in place. Very worrying for you. As Cat says, talk to Headway, Possibly involve your MP - they are actually good sources of information anyway, and sometimes just an email or call from them can help tip the balance when officialdom gets stuck.

Let us know how you get on, and perhaps some more people here wiill come up with some solutions x

[LooneyLuna in reply to Painting-girl]

I have sent the SW a long email tonight giving my reasons why his discharge to home would be unsafe. At least she has it in writing. Only home has been mentioned as that's what the hospital recommended. That's probably as that's the cheapest option though. Going to look into continuing care too. Personally I think supported housing would be the best solution, however, places are as rare as hens teeth! So a care home may be needed temporarily. I will def try my MP too if needed. Thanks for that. I'll def keep you updated. 😊

[Painting-girl in reply to LooneyLuna]

Hope you can get more info from the people here, and that you can get him the help he needs. Good that the SW has all your reasoning in writing now.

It might just be that his own home is a default option because they think he'll be safer from Covid, and he'll recover better around familiar people and surroundings. But he obv needs more support than is on offer. See if Headway can come up with anything we don't know about too?

As New_beginning said in the earlier post, his social care needs (that she's listed above for you) won't be met by what they're offering.

Try getting a full update from Headway on what he will need (they often emailed me back with info) and forward it to his SW copying in your MP if you don't get a helpful response (or is that too aggressive in the first instance? ) Oh, the other thing is that your MP's secretary will be a fund of sound information even without your MP pitching in, it won't be the first time they've been involved in something like this. And if you exhaust all proper channels, the MP is great at stepping in. Are you and your brother in the same constituency - that would be easiest? On any email to your MP, you have to give your name and address, and contact phone number so that they can check you are a constituent by the way, else they can't act.

I do think SWs have a complex job to do, and they're pretty overloaded. But I also found that ringing their office and talking to anyone in the team if my uncle's SW wasn't around could be useful too. Sorry, this is coming back to me in dribs and drabs from pre TBI days!

Thinking 'out loud' - Is there a compromise to be had on some sort of respite care? And, off the top of my head, has his SW or his partner's SW been to his home to assess how his partner would cope if he came home? It's a long shot, but perhaps her situation needs to be flagged up for help, if he isn't able to care for her?

Hope you get on alright x

[LooneyLuna in reply to Painting-girl]

When home was spoken about, I requested that his partner wasn't given any care responsibilities due to her health which is unpredictable. She is in constant pain and takes a lot of medication. She just wouldn't be able to cope mentally never mind physically. That's when I was told that he could be provided with the maximum care package of 2 carers, 4 times per day. Half an hour a visit just isn't sufficient for his needs though. He has no level of independence and relies on help for everything. The OT assessed his house for a temp measure but it's just not suitable or adaptable not even for a temp period. An adapted bungalow would certainly help with accessing the toilet and shower, however, there's no getting away from the fact that he can't be cared for by his partner and that's unsafe. He would just end up being neglected. I know sending him home is the cheapest option but I just feel it's not the best option for him.

[Painting-girl in reply to LooneyLuna]

No, it can't be. It doesn't sound right at all x

[LooneyLuna in reply to Painting-girl]

Just been told by the SW now that if he needs more support than the maximum care package, then he will get it. He can have more carers if needed. He would need 2 live-in carers though! His girlfriend can't provide any physical care at all. She has convinced the hospital that she can though. So does MS just disappear?? When it means giving so much care at home when it's not enabling him to be independent, what is the point?

[Painting-girl in reply to LooneyLuna]

Glad there's some flexibility, but it still seems risky to chance what they'll put on place. MS can go into remission, but it doesn't disappear....... Definitely go through all the steps people have recommended here first x

[LooneyLuna in reply to Painting-girl]

The SW has agreed to halt everything until a guardian is appointed. The guardian can then make the decision of where he is accommodated. A discharge planning meeting will be held too to discuss everything.

[Painting-girl in reply to LooneyLuna]

Excellent news - very pleased for you - and your brother, it sounded very distressing x

[LooneyLuna in reply to Painting-girl]

Thank you. Still got a way to go but it's a start! x

[cat3]

Hi Luna. My instinct regarding your brother's care package is that it's totally inadequate considering his girlfriend's health issues. And your previous post suggests that his interests aren't her priority and he might be safer and better cared for in a nursing home.

But I'm no expert on the limits and technicalities of funding and I think you need more knowledgeable people onboard to offer sound advice, so please phone the Headway helpline tomorrow on freephone 0808 800 2244.

Good luck in finding the best course to follow for your brother's continuing care. Love Cat x

[LooneyLuna in reply to cat3]

Thanks Cat3 I really appreciate you replying 😊

[philbou]

Refuse discharge

say you are raising it as an unsafe discharge and see what they say

The hospital social worker will discharge anyone

Get in touch with your local one straight away and ask for not only his care assessment also the carers assessment for his girlfriend

All this needs to be in place before he comes home