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?
Muchtoomuchtodo · 12/12/2021 22:19
I’m glad to read that @bloodywhitecat xx
2018SoFarSoGreat · 12/12/2021 21:02
Great news that coming home is looking more imminent ❤️
butterfly990 · 11/12/2021 10:32
www.assistiveware.com/products/proloquo2go
I have no experience of this but was looking at this when my partner had a brain tumor.
Candleabra · 11/12/2021 09:47
That’s really good news. Well done for pushing things.
Atla · 10/12/2021 23:10
Great news 
bloodywhitecat · 10/12/2021 22:03
@Muchtoomuchtodo
Now that you have the d/c sorted, can you push to make sure that he’ll continue to get therapy at home? There are often short term rehab teams or specialist post stroke services. I’m not sure about your part of England sorry.
Yes, the referral has gone into one team it he was rejected as he needed too much support but based on the improvements over the last few days it is being reassessed. If he is rejected again then he will be referred to a different team so he will come home with a therapy package. Once we have a discharge the hospice will pick him up too which is a relief.
PanicBuyingSprouts · 10/12/2021 20:47
Brilliant news and I'm so pleased that you can see a glimmer of "him" 
Muchtoomuchtodo · 10/12/2021 20:41
That’s fabulous op. Both that there’s a date for d/c and that he’s making progress.
Now that you have the d/c sorted, can you push to make sure that he’ll continue to get therapy at home? There are often short term rehab teams or specialist post stroke services. I’m not sure about your part of England sorry.
CovidMakesThingsHarder · 10/12/2021 19:05
That’s really good that things are happening. Hopefully if he knows the date too it will give him something to hold onto and 10 more days of physio etc will get him in an even better state for when he comes home to you.
bloodywhitecat · 10/12/2021 18:51
@Somebodylikeyew
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.
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
LostForIdeas · 10/12/2021 18:43
That’s very good news! 👏👏
I hope you will be able to enjoy this Christmas together!
Somebodylikeyew · 10/12/2021 18:30
Oh I’m SO pleased to read that, OP
How is he?
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.
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.
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.
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.
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.
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.
Niffler92 · 09/12/2021 16:23
Try contacting local district nursing team.
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
Atla · 09/12/2021 16:04
Oh no @bloodywhitecat
That's so shit. I'm so sorry.
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.
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
PanicBuyingSprouts · 09/12/2021 14:43
@bloodywhitecat oh that's so awful. Offering a friendly handhold through this
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