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Original poster

Bed blocking DH, how do I get him home?

134 replies

bloodywhitecat · 08/12/2021 20:33

He has terminal cancer, probably has 6 months left (although we have also been told he has 3 months). He's also had a massive stroke and needs a care package in place to get him home for Christmas. How the hell do I speed things up? His care on the ward isn't great and he is drowning mentally. He is unable to speak or advocate for himself. What are our rights?

OP posts:
Summersdreaming · 08/12/2021 20:35

I'm so sorry. I don't have answers but bumping anyway Flowers

Sharkfinsoup · 08/12/2021 20:35

I have no idea sorry but just wanted to say good luck…and I’ll keep everything crossed for you that you have a peaceful Christmas at home together. X

NigellaAwesome · 08/12/2021 20:36
Flowers
Malhao · 08/12/2021 20:36

Do you have power of attorney?

JaffavsCookie · 08/12/2021 20:37

Sorry bloodywhitecat, I remember your thread in the summer.

Can you contact care agencies yourself and then tell the hospital what you have arranged? Can the hospital give you a contact number for the social care team?
It seems really hard at the moment to get this organised, I have heard of a few people in the same situation.

Weatherwax13 · 08/12/2021 20:40

When we had a similar situation there was a social worker at the hospital who was helpful. I think ot was the ward sister who requested her to come and talk to us but I'm a bit hazy.
Might be a good start to ask if there's one at your hospital?
Hopefully someone knowledgeable will see your thread very soon.
Really sorry for what you're going through Flowers

Original poster
bloodywhitecat · 08/12/2021 20:41

@Malhao

Do you have power of attorney?
No sadly, he went from being at work full time on the Friday (despite his cancer) to a massive stroke on the Saturday, his receptive language was badly affected but seems to be improving but I don't think he would be deemed competent to make a decision like this.
OP posts:
DaisyNGO · 08/12/2021 20:42

So no offer of hospice at home? That really means you do the work but it sounds like you would prefer that?

I would talk to Macmillan and PALS. Flowers

Original poster
bloodywhitecat · 08/12/2021 20:44

Macmillan have been useless. The hospice are aware but are waiting for his discharge, I referred him, I wonder if it would've been better if the doctors had? I can ask the palliative care team at the hospital if they can do it.

OP posts:
Original poster
bloodywhitecat · 08/12/2021 20:46

@Weatherwax13

When we had a similar situation there was a social worker at the hospital who was helpful. I think ot was the ward sister who requested her to come and talk to us but I'm a bit hazy. Might be a good start to ask if there's one at your hospital? Hopefully someone knowledgeable will see your thread very soon. Really sorry for what you're going through Flowers
Thank you, I didn't realise there might be one at the hospital too. he has a social worker now but she seems to prefer to converse by text rather than phone.
OP posts:
uncomfortablydumb53 · 08/12/2021 20:46

I'm so sorry for your situation, I've read your other threads
I second the hospital social worker, they worked with me to get my DM home, and organised a Care package
I wonder also if MacMillan could be of any help
If nothing forthcoming, maybe speak to PALS
My thoughts are with you and DH

StillNoFuckingEyeDeer · 08/12/2021 20:47

How many care visits are they looking for? The more visits per day, the harder it is to source the care. Also, one or two carers needed per visit
Ask to talk to the discharge coordinator and find out if he has been fast tracked- mention that you've been told possibly only three months left.

Candleabra · 08/12/2021 20:47

Speak to the palliative care team. They are usually the liaison between hospital and hospice.
Really sorry to hear about your husband. I remember your thread in the summer too. Such bloody awful news for you.

hemhem · 08/12/2021 20:47

I'm sorry I have no advice but just wanted to send a virtual hug. Not very MN I know

uncomfortablydumb53 · 08/12/2021 20:48

Sorry x post. I see You've contacted Mac Millan

DaisyNGO · 08/12/2021 20:48

@bloodywhitecat

Macmillan have been useless. The hospice are aware but are waiting for his discharge, I referred him, I wonder if it would've been better if the doctors had? I can ask the palliative care team at the hospital if they can do it.
Oh sorry I thought the palliative care team were refusing to do a discharge

Sorry to hear re MacMillan.

elastamum · 08/12/2021 20:49

Sorry you are going through this. A few years back we employed private nurses to look after my mum in her last months. Cost a lot, but it meant we could manage all her care at home. We got them through Consultus care. We had 2 live in nurses who did alternate weeks. This meant we could look after her alongside our young children and she could die at home surrounded by her family as she wanted.

MsCupcake · 08/12/2021 20:49

I’d start with PALS, they can advocate for you and in my experience can really light a fire under some people.
Also, see if he has a named OT as they are the ones that will arrange/liaise with external care agencies. You might have to make a nuisance of yourself to get them to make their assessment. Make a big deal about his mental health/well-being to every person you speak to, every single time.
Does your area have a scheme in place to deal with the transition from hospital to home? I found a lot of information online that meant I could cut short the B.S. and delaying tactics and push for progress.
When I was fighting to get my husband home the ward matron was a major ally who quite possibly saved him from a massive breakdown.
It scared me how hard I had to fight to get him home.
Ŵishing you all the very best and sending you strength and patience in spades.

RandomMess · 08/12/2021 20:50

Well he could self discharge if that is what he wants and they consider he is on sound mind to agree to it.

LefttoherownDevizes · 08/12/2021 20:51

I can't remember the specifics but between thé palliative care team and the hospice they put my mum onto the less than 6 months left pathway which triggered benefits and more importantly funding for a high level of care at home/hospital beds and hoist/aids. Do you know if this had been applied for yet?

nevertoooldforindie · 08/12/2021 20:52

Find out who is coordinating the discharge on the ward snd ask what his care needs are. In our area people sometimes sit on brokerage for ever waiting for a package especially if they won’t consider a variety of times . Does he need two carers? Sometimes this can be reduced to one with special equipment. Ward OT should know. Would he be eligible for fast track funding or does the hospital or your community have its own team of support staff interim or hospice at home to support discharge? Keep an ear out for private carers as well that may work locally but are not on social services list. Wishing you all the best in getting him home.

LefttoherownDevizes · 08/12/2021 20:52

I honestly think the hospice may be the best bet, they are very keen on hospice at home. What area are you?

AnotherOneWithNoGoodName · 08/12/2021 20:57

Is he medically fit for discharge otherwise? If so, it all depends on services in your area. Can you ask for a meeting with the ward manager to discuss options? Harder at the moment, I know!

IVbumble · 08/12/2021 20:58

Is there any chance at he could be transferred to your local hospice as an interim move? It doesn't mean he can't eventually be transferred home but it will mean you will all get better support and he is likely to receive a higher standard of care than in the hospital.

Some hospices offer a self referral service to - maybe google your closest one and give them a call.

ilovebagpuss · 08/12/2021 20:58

Hospital usually has a discharge team which includes a SW. in the care home world it is usually them that rings us to arrange/look for a bed and sort funding.
There is a real shortage of home care staff at the moment so i know it is taking longer for people to get a care at home package in place. I don’t know if this is of any use but definitely PALS and discharge team is a place to start.
So sorry you are going through this and I hope you get your DH home.