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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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IVbumble · 08/12/2021 20:58

*too

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minipie · 08/12/2021 21:01

Have you tried Marie Curie - they may have some advice and help. (No experience but seen a few people on MN say they are good)

I really hope you can get him home

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tocas · 08/12/2021 21:03

So sorry you're going through this OP.
What is it that is stopping his discharge? Care package? Equipment? Ongoing medical need? If you know then tell us and we can offer more specific advice. If not then speak to a member of the medical team ASAP to find out.

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TheElderleyBrothers · 08/12/2021 21:10

He needs an NHS continuing healthcare package which is funded. This can be fast tracked for someone in his situation. In our local hospital there was a Care co-ordinator for each ward who sorted out the package when the various specialists had decided that medically Dad was fit to be discharged but needed ongoing care at home.

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LostForIdeas · 08/12/2021 21:12

We’ve been through something similar recently with FIL.

The best people to contact is the palliative care team. I’d contact whoever is dealing with palliative care, Macmillan nurses etc… and ask them for help.
They were the ones to organise fir my FIL to finally be allowed to move closer to home and have some visits. (No time for him to move back home unfortunately)

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bloodywhitecat · 08/12/2021 21:12

To answer a couple of questions;

He isn't able to self discharge, he isn't deemed competent at the moment.
He is medically fit for discharge and has been for about a week.
The discharge coordinator was supposed to call me this afternoon but didn't so I will speak to the palliative team again tomorrow as it was the doctor from this team that went to speak to her.
He gets PIP which was fast tracked due to his prognosis (less than 6 months)
He is on single person transfers on the ward and is able to assist when they need him to roll for personal care. He can stand with the aid of a Sara Stedy.
He is down for 3 visits a day and we are not too fussed when they happen.
Oncology aren't speaking to neurology (or anyone really, his care from oncology has been poor, we aere going to ask to be transferred

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SmellyOldOwls · 08/12/2021 21:13

Could he move to hospice or nursing home while he waits for his care package - it wouldn't slow things down and would be a more flexible and less clinical setting.

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bloodywhitecat · 08/12/2021 21:14

...Oncology aren't speaking to neurology (or anyone really, his care from oncology has been poor, we were going to ask to be transferred to another hospital as he had lost all faith in his oncologist before this happened. I called two weeks ago asking them to get in touch, I have emailed PALS, spoken to his CNS, emailed the consultant's secretary and emailed the CEO, no-one gets back to me. The palliative care team are still trying to chase this up as they agree it is appalling.

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LostForIdeas · 08/12/2021 21:15

Btw I agree with you re the fact he isn’t cared well.
He won’t. In part because he has no one to advocate for him. But also because they are likely to be on the ‘what do we need to treat’ line rather than ‘what sort of palliative care does he need’.
If he is currently treated for a stroke, the fact he should be on the end of life care fit his cancer won’t have register.

I suspect you will also have to be very blunt with them too and ‘refuse’ treatments/he needs to do some physio etc… on the grounds it’s not suitable for him at this stage.

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LostForIdeas · 08/12/2021 21:16

@bloodywhitecat, I’m sorry.
If even the palliative care are struggling, it’s going to be hard work…. :( :(

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bloodywhitecat · 08/12/2021 21:17

@tocas

So sorry you're going through this OP.
What is it that is stopping his discharge? Care package? Equipment? Ongoing medical need? If you know then tell us and we can offer more specific advice. If not then speak to a member of the medical team ASAP to find out.

The care package is stopping discharge. Equipment is here, medically fit for discharge, all follow ups can be done as an out patient.
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Rubi2 · 08/12/2021 21:23

I’m so sorry your going through this. I work as an OT is hospital and getting Care packages in our area at the moment is so difficult due to lack of carers. The things I would want to know is have they fast tracked him? This would mean the funding comes through continuing healthcare, if not your social worker should be looking for a package for you. X hope it get sorted for you both ASAP

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MushMonster · 08/12/2021 21:23

OP so sorry to hear thatFlowers
Long time ago mow, but my granfather wanted to go back home. Terminal cancer and he did not want to suffer with the treatments.
My father had to get him voluntarily discharged from hospital. Sign a bunch of papers.
He was on oxygen, so they came to change his bottle when needed. He had pain killers and quite lots of medicines, not sure he actually took any.
Nothing else. The rest of the care was done by the family.
He lasted only a few weeks, died on 27th December. The way he wanted, surrounded by his wife, children and grandchildren, in his bed.
It was a bit tough for my father. The doctor did not want to get him discharged. But they had to. Once that hurdle was passed, it was all very quick.

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tocas · 08/12/2021 21:25

Okay if it is care package your options are:

  1. contact palliative care, ask for them to get it fast tracked
  2. say you will do the care yourself (don't feel you have to do this, it is incredibly hard work and not really feasible unless youve got other adults at home to assist)
  3. privately fund carers
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WaltzingBetty · 08/12/2021 21:28

@bloodywhitecat
You need to insist on palliative care team meeting for discharge.
They'll need to arrange facilities at home/district nursing etc. They can't discharge him without that.
Push push push.
Make it clear he wants to be home

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ExConstance · 08/12/2021 21:30

I’m so sorry to hear all this BWC, I run a care service for a charity in the south west and every day we have several requests from social services to take terminal care cases. Unfortunately we and the other local providers, can’t take a single case at the moment due to staffing difficulties. Staff have left because of burn out and we can’t replace them. If you could speak to the managers of the local care services and plead your case you might be able to persuade them to put you next on their lists. Social Care is on the brink of collapse. I have been doing this job for 15 years and it has never been like this before.

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longbay · 08/12/2021 21:31

@TheElderleyBrothers

He needs an NHS continuing healthcare package which is funded. This can be fast tracked for someone in his situation. In our local hospital there was a Care co-ordinator for each ward who sorted out the package when the various specialists had decided that medically Dad was fit to be discharged but needed ongoing care at home.

I would strongly recommend NHS Continuing Health Care (CHC for short). It’s a ‘secret’ care package that people in the hospital will not tell you about because it is free and costs the NHS a fortune. It’s for people who predominantly need a care package for their health needs as opposed to their social needs. Your DH will be assessed only on his healthcare needs not how much money he has! If his needs are deemed great enough he will be awarded a care package that is fully paid for by the NHS. However it can be a very challenging process to go through. They do not make it easy at all! If you have the time & energy to go for it then I wish you good luck. Caretobedifferent is an extremely helpful site.
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Muchtoomuchtodo · 08/12/2021 21:35

It sounds as if his care needs have been established.
Have you got a hospital style bed, the correct type of mattress, Sara steady, commode etc at home already?
If so is it just a matter of the social worker putting the care package out to tender (like an advert for agencies to say if they’re willing and able to take that contract on)?
Do you know any friends or family who would be willing and able to assist? If so you could ask to have direct payments and employ them yourself.
I’m sorry that your DH’s prognosis is so poor. The palliative care and discharge planning teams with the OT and SW should really be pulling out all of the stops to prioritise his discharge. That’s already a lot of people to coordinate. PALS should be able to support you to achieve this.

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tocas · 08/12/2021 21:35

It's not a secret at all...

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Pleasedonteliminate · 08/12/2021 21:36

Where abouts in the country are you? Things work different In different areas,also depending on urban or rural...private care package might be good option. Contact agencies in your area see if they provide private care ? Hope it gets sorted very soon and he is home

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Jossbow · 08/12/2021 21:38

Please PLEASE ask for fast tracked CHC funding.
no way should you have to meet the cost of his care, be it at home or in a nursing home.

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Ritasueandbobtoo9 · 08/12/2021 21:43

If he is single handed care and can assist, can you care for him? There are no carers in some places.

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NopeJustNope · 08/12/2021 21:49

Tell the staff you want him discharged home for supportive care. This is your right. Ask them to apply for fast track continuing health care funding. This will pay for any care package needed to support care needs such as personal hygiene needs up to 4 times a day. This can be completed within two working days. Get him referred for supportive care in the community. He will get referred to community nurses who will support for symptom management if he is unable to manage oral medications. They can also refer onward for equipment, such as hospital bed, etc, & hospice at home, & Crossroads care if needed. They can also support you with lots of advice for palliative care. The hospital team should also fast track any equipment needed before discharge- again, within two days. Good luck flower, sorry you are going through this xx

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Rade · 08/12/2021 21:51

@bloodywhitecat Ive seen your other threads. I'm so sorry and I wish I could give advice. Macmillan were appallingly useless when my dad was terminal and I will never ever donate to them.
Is there a palliative care consultant? When mum was end of life we found the palliative care consultant to be excellent and he opened doors.

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MarieVanGoethem · 08/12/2021 21:56

I’m so sorry bloodywhitecat. I was going to ask about PIP, but I see that’s in place; & the equipment he needs is at home already, which is helpful. You can contact your MP about it - clearly they can’t magic carers from nowhere (etc) but in cases where they Take An Interest it can concentrate the minds of anyone who isn’t fully invested in resolving this ASAP. (I am, to be clear, very aware that lots of people involved will be working incredibly hard to get OP’s DH home safely & that this isn’t a simple task at the best of times; I’m not at all after just getting at NHS workers.)

It might be worth seeing if Maggie’s can offer you any advice or support, especially with MacMillan having been so poor.

Please don’t forget to look after yourself as well in all of this Flowers

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