Bed blocking DH, how do I get him home?

[bloodywhitecat]

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?

[Atla]

OP I am so sorry you and your DH are going through this. You've had some good advice on this thread.

What I would say at the moment is that where I am patients are going home 'awaiting a care package' and are still waiting weeks and months later, so you could be in for a long haul. You have experience of care work, so you know to an extent what you are letting yourself in for but bear in mind it will be 24/7, do you have anyone else to help?

Is your husband suitable for rehab in terms of his mobility/functional ability? I'm assuming OT and physio have assessed him already if you have equipment at home? Is he managing to eat/drink? Apologies, I've skim read the thread.

I think the palliative care team should be able to get things moving, and liaise with district nurses and other services in the community and make a plan with you and your husband about his wishes (and yours) going forward over the coming weeks and months.

[BetterCare]

What support are you getting from the Palliative Care team at the hospital?

When went through this with my Mum they arranged everything. Granted this was before COVID. So things may be different.

They should be arranging emergency funding with Continuing Health Care. This will include getting all the equipment he needs for home and transport.

Beacon is a good place to start with advice on CHC funding.

I appreciate it is a different time but with my Mum they sorted it out within a couple of days.

Good luck.

[vdbfamily]

Personally, if I had all the gear and felt I could cope I would just ask for him to be sent home whilst awaiting care. I would ask for urgent CHC / fast track assessment to be done once home and if you start to really struggle would ask GP to request an assessment from admission avoidance to put in support to prevent readmission to hospital. It is such a tough call but I personally would not wait for hospital POC. Some agencies insist on 2 carers for a stand aid and double handed care will take longer to source. Are there other family members who can help and give you a break if needed.

[Thesechipsdontlie]

Can you get the matron or team lead on your side? Be specific and persistent. Ask to be there at handover and state fixed deadlines for what you need to happen. (He needs to be home for Christmas, as an example, he needs patient transport home, a package of care/respite for you etc ) if the SW is not supportive ask to speak to their team lead also. Request an MDT to get things moving. Sorry Macmillan haven't been much use, our experience with them was mixed. Good luck op xx

[bloodywhitecat]

@Somebodylikeyew

That link also has the fast track documentation on it.

Thank you!

[Somebodylikeyew]

That link also has the fast track documentation on it.

[Somebodylikeyew]

Ok. Ipswich and East Suffolk Continuing HC team are on 01473 770198 / [email protected]
More info here, but I would ring and ask how you request fast tracking.
ipswichandeastsuffolkccg.nhs.uk/Localservices/ContinuingHealthcare.aspx

[bloodywhitecat]

"If he can be managed with one carer and you are prepared to meet his needs until care is available I would ask the ward OT to let you come in and be shown how to use the Sara Steady"

Already done, I was familiar with one anyway and have proved I can use it safely.

[atleastitswarm]

My mum and I brought my dad home with no care package in place after a similar situation to yours. Nurses told my mum several times she should really reconsider and wait it out but the hospital he was in allowed no visiting at all so it was just barbaric to keep him there. Dad was deemed fit enough to discharge himself so I can’t help in that area, I’m praying someone comes along who can. Sending you lots of strength and love.

[vdbfamily]

If he can be managed with one carer and you are prepared to meet his needs until care is available I would ask the ward OT to let you come in and be shown how to use the Sara Steady. You will probably have to sign paperwork to say you have been shown what to do and you feel confident and competent. The OT should have already written a manual handling plan to go with the Steady which you should get copy of. I would ask for this tomorrow urgently and then once he is home, ask for urgent CHC assessment at home to provide the care required ongoing. This bypasses the current system of patients all having short term care packages before long term assessment and provision made. These patients all end up stuck as there is not enough short term care available.
One thing to check is nights time needs as obviously in hospital there are nurses awake all night to bring bottles/ commodes etc. You will need your sleep so if he is not independent with a bottle they may need to try a convene which is like a catheter but attached via a kind of condom and drawings into a night bag so no one needs to do anything. Does not work for everyone but great for some.
In our hospital Social Workers will not get involved until patients are home or in a community bed so it is very hard for anyone needing SW input. If there is an OT, they should be able to help speed things up. If you cannot cope with the care yourself, as someone else mentioned, it is probably quicker to phone around and find care privately than wait for hospital who are trying to find care for so many others. You will then have to find it but hopefully CHC would assess and take over quite quickly.
Good luck OP.

[bloodywhitecat]

I think we come under Ipswich and East Suffolk

[CrotchetyQuaver]

I had my father die 12 days after a cancer diagnosis in October. I was caring for him whilst trying to sort things out.
The problem is the lack of carers available. I couldn't get a care agency with any availability to help us, we were also trying for a nursing home, many had no vacancies (I suspect there are beds available but not the staff) and he was turned down by one as they felt they couldn't safely meet his needs (which weren't high, he wasn't in any pain, just getting weaker by the day). In the end as things moved downhill so quickly he was scooped up by the local hospice 2 days before he died.
The "system" is falling apart at the seams.

Very sorry to read you're going through this with your DH, that must be very difficult. I'd consider trying a nursing home to get him out of hospital, I think you should get that fully funded because of the terminal diagnosis.

[Wotagain]

I’m so sorry, this is awful for you. The care industry has collapsed due fairly and squarely to Brexit.
But, This is no help to you,
Is it at all possible that you could call on friends and family to help? Do you know any young people wanting care related experience for uni courses who you could employ as a personal assistant?

[Somebodylikeyew]

N&W Palliative Care Strategy doc:
www.norfolkandwaveneypartnership.org.uk/publication/key-documents/73-norfolk-and-waveney-palliative-and-end-of-life-care-strategy-for-adults/file

[tuliparcher]

Unfortunately care packages are especially difficult to source at the moment.
Care companies don't seem to take on many new clients just before Christmas either. It's rubbish.
Hope you manage to get it all sorted soon

[Somebodylikeyew]

From the link above: NHS Norfolk and Waveney Clinical Commissioning Group NHS Continuing Healthcare Team are available by calling 01603 257243 or emailing [email protected]

[Somebodylikeyew]

Oh BWC, I’m so sorry.

Are you Norfolk & Waveney? This link gives some contacts for Continuing Healthcare:
www.norfolkandwaveneyccg.nhs.uk/health-services/continuing-healthcare

[EmbarrassingHadrosaurus]

Supporting everyone who has mentioned CHCs but, as others have pointed out, implementing one will always depend on the availability of people to do this.

We're attempting to deal with discharges for several people in different parts of England and it varies enormously. For two people, there hasn't once been a chat with any relevant personnel, neither by phone nor email/text.

[Cecillie]

I'm so sorry you are going through this
I'm the last five years I have had the same with both my parents
The chc is great and both were fast tracked before leaving the hospital but in the south east the big issue is complete lack of carers. With my father we had two months at home and the council were not able to provide a single care visit, I was let down by two private care agencies but managed to get one private lady a few times a week for the last few weeks.
They did manage to find a care agency for my mother and we had sporadic visits . The hospice were great at talking the talk and being sympathetic but flatly refused residential care " because they only take people at the very end" despite me pleading with them three days before she died.
Just trying to say to people talking about hospice and chc, that it's not as good as it sounds and if there are no carers there are no carers.
Would a live in person be an option? That was our next plan. There are agencies that supply a live in carer . It worked out less expensive and would have provided more continuity,
I really hope you can get something sorted and get him home soon, it's worth the struggle though it seems insurmountable at the time.

[Beseen22]

I would ask to speak to the senior charge nurses. On one ward I worked on I remember there had been 5 patients that it was handed over "awaiting care package" and when I got the chance to look through the notes there had been no update in 3 weeks. I spent the day calling social workers who were just sittinfg waiting to hear back from someone else but not actively chasing it because their caseloads were crazy and by the end of my shift I had 3/5 ready to get home the next day. Sometimes in an acute ward when things get hectic and there are more pressing jobs to get done and due to it being a new nurse every shift its not always followed up as well as it should be. But the Sen charge nurse will always be the same for the ward and would def want to get the bed free as soon as possible so would try and get things done for you.

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. Would allow easier visiting and he's less likely to just get left in a room as sadly some do in acute settings.

If it were my DH I would probably take him home on bedrest just to get him home and have him roll for personal care but thats easier for me to say as a trained nurse who knows what that entails.

I'm sorry about this, you should be at home enjoying your last Christmas with him, not fighting all these stupid battles. If its still not sorted for Christmas you could potentially hire some carers for 2 days and get him home on pass? You 100% shouldn't have to but just to give you the option.

[bloodywhitecat]

And thank you all, I am taking notes and will be on the phone again tomorrow.

[bloodywhitecat]

He can't get to the loo even with help at the moment but he can help with dressing, undressing, washing etc. I am fully prepared to bring him home without a package in place and have done care work in the past so know it isn't going to be easy by any stretch.

The profiling bed and air mattress, the commode, wendylets, Sara Stedy and a seating chair are all here. He doesn't need hoisting at the moment.

He has a social worker.

We are in Suffolk but he is in hospital in Norfolk as we are on the border (our GP is Suffolk).

[hivemindneeded]

I am so sorry you are dealing with this. With my Ddad, we had to find a nursing home as they refused to discharge him back home due to the level of care he needed. I think you'll have to push for the hospice or prove you have sufficient nursing care at home to make his final months comfortable.

[HammerToFall]

there should be a discharge liaison person on the ward whose job it is to get everything in place support etc so he can be discharged. ask to speak to him/her. thinking of you x

[BotterMon]

So sorry OP. Lots said by PPs.

Doesn't matter who funds his care package, whether that be private, LA or CHC you will struggle to find a company who has the capacity to pick up the care package due to staff shortages heightened by the time of the year. Christmas rotas are pretty much finalised already.

You can phone around all care providers - if a client has passed away they may have some capacity to take on a new client.

There are two other options I am aware of - hospice at home via local hospice or ask the discharge team/social worker whether your LA has a 'Winter Pressures contract' with a local care provider. If so, those providers are paid handsomely to take all hospital discharges whether ongoing or EOL packages.

Really hope you manage to get him home.