How to find a nursing home - not self funded / no hospice available

[tigerbear]

Hi all,
My MIL has a fractured pelvis after a fall, cancer of the intestines, dementia, rectal problems, septicaemia, several infections - inc recurring bladder infections, diabetes etc and has declined massively in the last week. She can’t stand, and is having difficultly eating, breathing issues etc.

GP advised it would be too taxing and distressing for her to be taken to hospital, as would likely be on a trolley in casualty for up to 48 hours.

Shes at home, with carers visiting three times a day, plus family support of someone going in every day, but this is becoming too much for the family to deal with - eg her daughter and sons are having to clean her up if she’s had a toileting incident, change her pads, etc Understandably, distressing for everyone.

the family have been told she needs 24 hour care.
Such is her decline, that people from the local hospices visited today, but there are no beds available, and they said she’s not technically critical enough to take in, and recommended we look into nursing homes.

Theres also 95 year old FIL at home, who is disabled and needs help, so the house can’t be sold to self fund care for MIL.

I’m trying to research what the options could be - I believe they’ve been assessed by the LA, and that their savings are only about £2k

How does one actually find a nursing home who will take patients who can’t self fund?
I’m searching online, but it brings up homes that are extortionate.

At a loss of what to do next.
any help much appreciated.

This.
It’s so shocking reading this thread, as things sound even worse than when my parents were nearing end of life.

Thanks for all of the messages, much appreciated.
To answer a few questions (sorry I can’t respond to all

• she was discharged from hospital after having the fall and fracturing her pelvis about 3-4 months ago, during which time she was also diagnosed with intestinal cancer, and the week before had been diagnosed with dementia
• NHS care package was put in place upon discharge from hospital, with 2 carers per day, in the morning and evening, plus SIL is there 5 days a week, and the other two days BIL, and DH and I / in the last few days, the hospice nurses have said they can come once a day, so three nurse/carer visits a day
• There is absolutely no money to fund a nursing home - the family just can’t afford it. SIL is their official carer so can’t work, BIL is retired, and DH and I don’t have any spare savings. Their house can’t be sold as disabled 95 year old FIL also lives there
• Hospital has been deemed not an option - GP said as she’s not classed as an emergency, she may be on a trolley in a corridor until they can find a bed. Given that’s she’s delirious and confused already, we feel it would be highly distressing for her. Plus, GP thinks she’s at risk of more infection in hospital. She’s already got a chest infection and bladder infection

DH is with her at the moment, and says she’s barely conscious and not eaten anything 🥺

TBH, we don’t think she has long, but the hospice people said otherwise.

32 degree heat here tomorrow will obv not help matters! 🥺

I’m so sorry this is very distressing for everyone. If she was my mum I would want her in hospital even if it is a long wait in A & E someone would be able to stay with her. They have access to everything she needs there. Failing that,
I once called adult social services for my dad , it was a bank holiday, they came the same day assessed his needs and provided all night care for four nights plus his carer visits during the day. The very best of luck.

Sorry she's so unwell, if she's now semi conscious I would ask for a doctor to see her, it makes her death much easier if a doctor sees her, you can call 111 or the hospice nurse can help you.

Apparently, SIL has asked the DN before for help in getting assessed for a nursing home place, but was told that she has very little influence on outcomes 🤯
DN is coming tomorrow to change bandages, so they’ll ask her again.

GP visited on Wednesday, and was pretty useless, and advised against hospital.
@ilovestayingin MIL worst fear is to go back in hospital, and the family would feel terrible taking her in, and her being in a noisy crowded corridor on a trolley, at risk of soiling herself, for up to 48 hours until a bed is free.

There is no expectation that you will pay for care or that they will pay for care either, so don’t worry about money.

Can you all manage as you are until Tuesday and maybe for a few days after that? If so, then social services is your best bet. It is their job to assess your mum’s needs, liaise with other services and find suitable care for her. It sounds as if she needs residential nursing care. Personally I would consider putting in a safeguarding report today (look on her council website) saying she is at risk of harm through unmet care needs and unpaid carer breakdown just to get the ball rolling.

If she has immediate medical needs (new pain, new worsening symptoms, new evidence of infection) then I would call 111 or 999. They will assess her and may be able to access services like hospital at home/urgent community care or will advise if hospital is the best option for her; they can also put in a safeguarding referral that carries weight because they are seeing with their own eyes what’s going on at home.

Care homes near us charge £2200 per week for self funded people and if the residents themselves don’t have the liquid assets for three years the family has to guarantee the payments. That is obviously very expensive but brings more choice of location, more luxurious place.

If the state is paying, there will be reduced choice if any.

Sorry, I’ve now seen your update - I hope better arrangements can be worked out and that your MIL is not in pain. It’s a very difficult moment for you and the family and I pray your MIL is comfortable. X

I have no advice but for various reasons (very elderly parents with conditions, who have no assets whatsoever and who are 200 miles away) this is my worst nightmare. I'm so sorry. There will be a local authority duty social worker somewhere. Can you try that?

Palliative care is in theory available on the nhs.

in practice most hospices are charities not part of the nhs and their pressure on beds is intense. Many run a hospice at home service to support patients on end of life at home, but that is also usually overwhelmed.

in practice you either cope at home with what support you can get out of gp and district nurses (and some are amazing) or like my dad you get admitted to hospital and die there.

Is there a dnar or respect form in place and a note in her records that she is not for hospital. If she's distressed the nurses need to ask the doctor for anticipatory medication to keep her comfortable. Are there records of visits kept at home, do you get a copy of the GP visits.

She should qualify for CNC which will v likely fund the full cost of any care home. They can fast track this and can be sorted in a day. Also carers allowance. Been where you are and it's tough navigating the system and people will fight you but know your rights and don't give in. CNC is for people like your mum.

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

Look at your local council website, within the adult care pages there will be an emergency duty number. Call them - don't wait until Tuesday. Tell them you require urgent nursing home placement.

That’s for a Care Home, not even Nursing?

The most swanky one around here is £1800 but you can find a really decent one, where you know they’ll. e well looked after and happy for £1400.

We sometime have families moving their beloveds into local Care Homes from other areas, usually London or the Home Counties.

I’m so sorry your MIL and the rest of your family are going through this.

I’m so sorry. Has the GP prescribed any serious pain relief for her end of life care?

@TinyMouseTheatre she’s been on continuous morphine patches for the last few months, I’m not sure if the GP have given anything else.

Not a SocialWorker. Health staff only. Just don’t want OP to go on a wild goose chase.

Ask the hospice nurse ro check if there is an anticipatory drug chart, it's morphine, anti sickness and a light sedative.

She’s also on antibiotics for the chest infection, diabetes meds,paracetamol etc

This is utter bullshit.

They can’t and won’t do that. House is not allowed to be taken into consideration while eligible person lives in it. Stop scaremongering.

It’s CHC not CNC and who in this scenario is claiming carers allowance?

Only if MIL gets attendance allowance! Only if person claiming under 65.

Speak to district nurses about attendance allowance special rules if she’s doesn’t claim it’s

Agree with doing this.

Try calling social services emergency duty team if it’s become untenable at home. All councils will have one. Say family can’t cope and it’s carer breakdown. They can usually source urgent respite.

It won’t be free but if they have no savings she’ll have to pay an assessed contribution but this won’t be worked out until weeks later so you can look on the care cost calculator which will be on the council website for rough idea. There would be nothing to pay right now as that will be worried about later.

Ask DNs for fast track CHC as well as if they think she’s actively dying end of life they can put this in place some day/next day.