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?

[Domino45]

Social worker here! I agree with asking the ward about CHC as part of the discharge process. It can be queried if your husband is eligible for fast track based on his condition instead of having a full DST assessment at this stage. If there’s a social worker involved they can speak to the ward about this and should do. In my LA the hospital social work team assess and arrange care for up to 6 weeks to enable a proper assessment outside of hospital and to discuss the financial assessment process for ongoing care. It’s meant to assist with discharges to avoid bed blocking.

I would speak to the social worker and ask they call you not text if you prefer this

[endofthelinefinally]

Contact your MP. Mine was excellent when I was getting nowhere with my hospital. She made some phone calls and somehow cut through the red tape. I am so sorry you are in this awful situation.

[Ancientmale]

You've beeb badgering everyone, quite right too. I can only suggest your MP, Health Authorities, especially over the poor performance of most of the hospital departments.

You should feel proud of yourself.

[2018SoFarSoGreat]

I have nothing useful to add, but wanted to send you a hug, and a shoulder to lean on if you need it. I'm so sorry you and your lovely DH are in this place. Hoping desperately that this gets sorted out at the earliest

[Tombero]

www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool

Echoing others, you need to ask for fast track continuing healthcare.

Ask for the discharge coordinator or continuing healthcare team.

So sorry this is happening and hope you can get the support you need to bring your DH home

[CovidMakesThingsHard]

I’m so sorry, OP, I’ve seen a few of your other threads.
What exact care does he need? With the equipment in place, could you provide all the care he needs with help from family if it means getting him home for his last Christmas together until official care can start? It might hurry things along as well.
Or if I knew you in real life I’d ask to start a gofundme for you, and state it was for private carers to get him home with his family for Christmas until social care kicked in. I promise your firmed and family would want to help with this.

[doodleygirl]

I have no advice but wanted to send my support. So sorry you are having to negotiate all of this, the system is so shit.

[TortolaParadise]

A social worker may be the way forward. Being pushy and demanding he is discharged is also an option. However be sure that you are making the right decision for both of you. I have been here before. I wish you all the best.

[DaphneDeloresMoorhead]

Op, how much support does he need with his personal care ? Can he get on the loo with the Sara stedy and get dressed with help ? Is he paralysed? Or catheterised ?
Mum was discharged with a care package of 4 times a day - realistically this was too much and all the carers did in the middle of the day was sit around passing the time. The main thing that was needed was the help dressing and getting ready for bed. Now I know what to do I could do that by myself if I needed to.

The issue may not be just as simple as getting the care package - it maybe down to equipment such as a stedy, profiling bed, wheelchair etc.

You have my greatest best wishes - we were in just this position last year and it's a horrible place to be.

[MarieVanGoethem]

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

[Rade]

@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.

[NopeJustNope]

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

[Ritasueandbobtoo9]

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

[Jossbow]

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.

[Pleasedonteliminate]

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

[tocas]

It's not a secret at all...

[Muchtoomuchtodo]

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.

[longbay]

@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.

[ExConstance]

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.

[WaltzingBetty]

@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

[tocas]

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

[MushMonster]

OP so sorry to hear that
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.

[Rubi2]

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

[bloodywhitecat]

@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.

[LostForIdeas]

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