How exactly do you get home visiting nurses for end of life?

[stirling]

I think my dear dear dad has days or weeks, its heartbreaking. He's currently in hospital but panic stricken and terrified since they're neglecting him completely. He's adamant they're causing harm and wants to go home to die. The nurses are not commenting and no doctor is ever available. Only allowed a visiting hour slot for one person.

He needs to be home with my mum but she has dementia and now that he's totally bed bound, worried who's going to help him with toilet, feeding etc. He needs a nurse for these final days but how do I arrange mcmillan or Marie curie?

The hospital are not helping at all. I don't live close by
Thank you.

Can you tell us what he's has @stirling?

My DF had cancer abs watched to die at the local Hospice. They didn't have any beds but provided Hospice at Home with a Hospital bed until that could have him there.

The Hospice at Home was basically a Nurse that talked us through everything then someone to sit with him every night so that me and DSis could get some sleep.

There needs to be a home care assessment of needs by a social worker before he can be allowed home. They then arrange equipment and home carers. But you should be able to get a summary of his situation and how they see the future from the ward. Ask for his doctor to call you back. Ask if he is now on a palliative pathway and what is expected/planned. Ask who his social worker is and contact them.

If you get nowhere then contact PALS, but I’ve never had to do that.

www.nhs.uk/conditions/social-care-and-support-guide/care-after-a-hospital-stay/arranging-care-before-you-leave-hospital/

www.nhs.uk/conditions/end-of-life-care/what-it-involves-and-when-it-starts/

I’m sorry, it’s so hard

I'm sorry you're in this situation, we went through this, earlier this year and its very hard. I did take comfort in knowing that we fulfilled my MILs wishes though.

You need to speak to a doctor. Phone the ward. Say "I'm x and I need my father's consultant to phone me back on..." If pushed, say you want to discuss how to arrange palliative care at home because that is what your father wishes.

Will you be able to be there with your parents? Will your father being brought home cause distress to your mother or is she able to understand this still? What facilities do you have at home that would help - is there a hoist / hospital bed there already? If not, the hospital will need to arrange getting some items to the house so you may need to think about making room somewhere downstairs.

There will be a carers package arranged by the hospital for the first 4 weeks after discharge. This is likely to include carers 4 times a day who will attend to personal care. You will also be put in touch with the district nursing team for nursing needs and they arranged our macmillan nurse for us, who came out and sat with her and us overnight for the last few nights.

My MIL came out of hospital on the Tuesday and died in the early hours on the Saturday. The first few nights, we tried staying with her ourselves but as it became clear that she was so very sick, we wanted to have the macmillan nurse there for the last few nights to help us through everything.

The hospital issued the end of life medication, which I've heard can be difficult to obtain at the right point.

Like I said, I know how hard this will be. I also have a parent with dementia and... its hard. I hope by offering the practical things I remember, that helps

That second NHS link takes you through to Macmillan and Marie Curie.

Where are you op. If it's south London pm me

Thank you so much for all your support, replies and very helpful links.

He has end stage prostate cancer that's basically spread to lymph nodes, bones, skull, etc... He's has a palliative care team for a short period a few months ago but it was only for six weeks. Then they stopped it. He's fractured his spine and his arm now, can't move.

Yesterday I saw him drifting in and out of consciousness, his skin around his eye looked purple and he couldn't talk properly/form words . Three days ago, before the hospital visit he seemed to be fully conversational albeit in pain from the broken arm which isn't even in a cast/bandage...
Apparently nothing can happen because of the bank holiday in terms of decisions to go home.

Eechuffingnuff that's interesting, I will ask about end of life medication. Perhaps that's why they wouldn't release him yesterday, they said the pharmacy was closed.
I just hope he doesn't die there or I'll have that on my conscience forever. He begged me yesterday to get him out.

This is my dad, who loved the NHS and used to compare hospital stays to staying in a five star hotel

My mum was looked after by hospice at home nurses for the last week of her life, they were invaluable. Have you tried googling hospice at home + your local area? Or ask your GP/ local hospice if they can refer or give you details. Sorry this is happening to you and your dad, I hope you can get something sorted.

Hi OP so sorry you are going through this. It is so hard. Both my parents wanted to die at home but it was impossible to arrange. We got Carers via the end of life social care system for a little while but I’m afraid the hospice/ hospice at home help for them (Shropshire) was terrible. My dads hospice nurse would only ever ring him and if he said he was ok she wouldn’t bother again unless chased. In reality he was in agony and in dire need of better pain relief which she would have see if she’d visited (pre COVID). Maybe some areas of the country are better - I really hope so.

Sorry to hear about your father. The hospital can complete a fast track form which should include where the patients preferred place of care is. Once submitted and if the patient is able to be moved, the move home with care in place - for example carers coming in 4 times a day - can happen very quickly, for example in 24 hours. I hope that helps. You can google fast track for end of life care for more information.

You poor thing. My DF also broke bones as a result of end-stage cancer, where it thins the bones. I would go in and demand to speak to somebody about having palliative care at home or for him to be moved to a hospice. We were nervous of hospices but they are amazing places with the kindest, most knowledgeable people. From there, the hospice staff arranged for district nurses to help us at home for the final weeks as that was my df’s wish. We could call the nurses day or night and did so for pain relief etc. Macmillan was no use to us really though they do help others

Is palliative care at home even possible or desirable if there’s only your mum with dementia at home?

Thanks again everyone I've just had a long day and checked in now. Very interesting re fast track, I think my GP mentioned it to me.
Agree my mother with dementia poses a risk but my brother also lives there but is not there much.

Went to see him again today and he was calmer since he'd been moved to another ward - this time for the elderly.
I'll certainly look into local hospices.

Thank you