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Bed blocking DH, how do I get him home?
134

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?

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bloodywhitecat · 09/12/2021 06:34

N&N

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countrygirl99 · 09/12/2021 07:31

I'm afraid I'm another to flag that even either funding in place it's hard to arrange care st the moment purely due to demand exceeding supply. It took us 2 months to get a package in place for self funding dad and a work colleague is having the same problem. ILs can often not get their funded sitting service so FIL can attend medical appointments of his own as the agency are short staffed.

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NightOwl19 · 09/12/2021 09:16

The palliative care team can fast track terminally ill patients to get them home within 12-24 hours. Ask for tour hospitals policy on this and why they aren't complying

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Tomselleckhaskindeyes · 09/12/2021 09:19

you need to get pals involved and ask for a care act assessment from social services.

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Rade · 09/12/2021 12:06

Alternatively have you considered moving to hospice? I know its not what you want and not ideal but there is a short window when you can move someone before it becomes inappropriate for them to be transferred and I would hate for him to miss that

This.
A hospice environment is a whole different world to a hospital. Ok it's not home but the level of care is amazing as well as the social facilities. It does seem your DH is in a particularly difficult category being palliative care with a stroke on top.

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bloodywhitecat · 09/12/2021 12:29

@NightOwl19

The palliative care team can fast track terminally ill patients to get them home within 12-24 hours. Ask for tour hospitals policy on this and why they aren't complying

He is terminal but not yet at end of life so I wonder if that makes a difference?

Hospices are wonderful places (I used to work in one) but he's not at hospice stage yet from a cancer POV.
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CovidMakesThingsHard · 09/12/2021 12:44

It’s so bonkers that you want him home, have the equipment and can care for him and they’re not helping that. I think people are so used to people not wanting to do care for family. But it’s a hugely different thing caring for a partner or child short term than say a parent with dementia for years. I hope whoever you get to listen today helps. Surely PALs can’t leave him there when getting him home as you both want frees up a bed.

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PanicBuyingSprouts · 09/12/2021 12:49

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.

When DMIL was bed blocking I phoned the SW and Discharge Team daily.

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bloodywhitecat · 09/12/2021 14:32

And do you want the really good news?

Someone on his ward has covid so I can't visit him for 10 days.

And the way I found out was through a 3rd party. I am fucking raging. It really does feel like the final straw for me emotionally.

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PanicBuyingSprouts · 09/12/2021 14:43

@bloodywhitecat oh that's so awful. Offering a friendly handhold through this Thanks

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uncomfortablydumb53 · 09/12/2021 15:05

Oh no! I'm so sorry. That really is the last straw
Could your GP help... or even your MP to tbh
You must be exhausted

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ilovebagpuss · 09/12/2021 15:18

Would the Carers passport be any use to you? Attached screenshot of the nurse would sign maybe under the end of life care option? We have some visitors using this at our care homes during Covid lock down.

Bed blocking DH, how do I get him home?
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Atla · 09/12/2021 16:04

Oh no @bloodywhitecat
That's so shit. I'm so sorry.

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gogohm · 09/12/2021 16:14

Call nhs continuing card and ask for an expedited assessment on the grounds of terminal illness, also apply for any benefits you are entitled to. Try adult social services too but that is means tested so if you have over £23k it's likely that it will be rejected.
Hospital social worker is worth pestering too. Meanwhile call local care agencies and get prices and availability

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Niffler92 · 09/12/2021 16:23

Try contacting local district nursing team.

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PinchedWeasle · 09/12/2021 17:17

Hi, I’m new here so sorry to invade on what is a really frustrating and stressful time for you.

I worked at the N&N for 15 working years as a Physio and it was always the ward Physios and OTs who would drive complex discharges, along with the complex discharge team. The PTs and OTs should be urgently determining your DHs mobility and equipment needs, and discussing with you how this might fit in your home. The nurses should already have done a 24hr care-needs plan so the SW can source a care package to fit in with what you, and any other family, might be able to do themselves.

Please PUSH for a conversation with the ward OT - find out what the delay is, and keep phoning them because in my experience they can really get the ball rolling.

Also ask about the Discharge to Assess pathway - (I hope the service is still up and running, apologies if not) - this is where the patient moves out of the acute setting (ie, the N&N) to a community setting pending going home with all the right equipment and care in place. At least this would be a stepping stone for you and your family.

I sincerely hope you get a resolution soon.

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PinchedWeasle · 09/12/2021 17:22

Sorry, newbie error. I should have read all your posts.
I see you already have the equipment in situ. Apologies.

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CraftyBugger · 09/12/2021 18:17

I work in oncology and deal with fast track discharges everyday. Part of what could be holding things up could be that he will be classed as out of area as the hospital he's in is in Norfolk and you live in Suffolk, so it has to go through more people to organise the package of care.

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bloodywhitecat · 09/12/2021 20:24

Thank you all, I am more hopeful there will be positive news in the next few days thanks to the guidance from the posts here.

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CovidMakesThingsHarder · 09/12/2021 21:39

Oh that’s so shit.
At this point I’d hit anyone you can, MP and even local news if you can face doing an interview/having your story told.

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bloodywhitecat · 10/12/2021 18:14

He should be home on or before Dec 20th. Thank you for all the advice and giving the strength to keep pushing.

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Somebodylikeyew · 10/12/2021 18:30

Oh I’m SO pleased to read that, OP Flowers

How is he?

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LostForIdeas · 10/12/2021 18:43

That’s very good news! 👏👏

I hope you will be able to enjoy this Christmas together!

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uncomfortablydumb53 · 10/12/2021 18:46

Oh I'm so pleased to hear that
I'm sure you'll be relieved that he'll be home with you soon

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bloodywhitecat · 10/12/2021 18:51

@Somebodylikeyew

Oh I’m SO pleased to read that, OP Flowers

How is he?

Making small steps to recovery, is off the thickener for fluids which is huge because he hated it so much he wasn't drinking. Receptive language has improved and tried to say words, on the last day I was able to see him face-to-face said "I am" when I told him he seemed brighter that day. Standing is improving to the point he is not using the Stedy on the ward he is using a banana board to transfer. I can see 'him' inside there somewhere now.
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