Nursing homes say "unable to meet needs" of mum but NHS say palliative care required not hospice end of life care.

[listitorchuckit]

As a family we seem to be in a catch 22 situation in respect of obtaining the right care for 88 year old mum.

Hospital are keen to discharge her as there's nothing more they can do for her (she's now bed-bound, catheterised + using incontinence pads and on a syringe driver for pain relief). Care at home isn't feasible, we're told that she requires a nursing home place. The local nursing homes which state on their websites that they provide palliative care, are saying that they can't meet her needs.

She has terminal bowel cancer, is barely eating, just about staying hydrated, but pain is being controlled by morphine pump and she's reasonably compos mentis.

What do we do ?

This is the hospital’s problem. They can’t discharge her until they find a suitable place to discharge her to. Presumably you’re talking to a discharge social worker or equivalent? It’s their job to find a place for her.

Are you in contact with the Social Work team at the hospital or local council?

If not, i would give the local Adult/Elderly Social Care Team a call in the morning and Macmillan as well.

Are there any hospices in the area as they might be able to help or at least advise?

Any possibllity she can go home, with the right support?

I agree with this. I mean they can't discharge her unless its safe, I guess she could go home for palliative care/home hospice if you agreed to that, but if you can't do that, then it is on them to find her a place (social services and/or the discharge team) and she can't just be released, can she? How difficult for you all, it's so stressful. Care homes tend not to want to take highly dependent people, I've been in this exact situation and there were never any care homes who would take them, in the end a hospice place was found.

Not wishing to be insensitive OP, but if your mum is bed bound and on a syringe driver, have the medical team given you any indication of her life expectancy?
It may be that she stays in hospital until she passes?

We're told that palliative care is appropriate but that she's not considered close enough to end of life for a hospice discharge to be appropriate.

Being at home, supposedly with suitable care arrangement in place is what landed mum in hospital. My siblings and I have given it a try and it's just not feasible, if we go back to that she'll end up bouncing in and out of hospital until she passes. She hates being in the hospital, it's not a nice environment at all. They want to discharge her and she wants to be discharged.

My dad went to a hospice for a while and then home. A person doesn't have to necessarily be right on the verge of dying, in order to get help from the hospice. My dad went to a lovely place for a couple of weeks and they were so helpful. I'd speak to a hospice yourself rather than just taking the hospital's word that they won't help.
My dad also had lots of help from macmillan and then later on community nurses who stayed overnight and took care of the syringe driver etc. Might be worth investigating that option for home care too.
Am very sorry OP - it's a difficult time x

You’ll have to stand firm as there will be immense pressure to agree to a discharge to her home with care - and it seems you’ve tried this already. With her age and health needs, she should be eligible for CHC but it can be hard to find a place. Very tricky for you all and I feel for you.
Make sure you spend what time you can with your Mum and don’t waste too much time searching for a solution - leave the hospital to do it if they’re that keen.

Who has said hospice is inappropriate? Hospice stays are not exclusively for end of life care. They also deal with symptom management and longer term palliative care patients.

Care homes are not appropriate. Generally care homes do not have nurses on staff - or certainly not round the clock nursing staff. A nursing home could potentially be able to meet her needs but that very much depends on her exact situation and also the current capacities of the home. Ultimately this is the hospitals issue to resolve. Whatever you do don’t allow her to be discharged home without adequate support. Even if it feels horrible to do so.

wishing you all the best

@notwhingingjuststatingfacts we know it's a nursing home that we need, we've been surprised to find though that the local(ish) nursing homes with vacancies won't take mum on, they say that they can't meet her needs even though their websites state that they offer palliative care.

I really don't see why a nursing home can't help your mum, unless it's the morphine? I wonder if it's because a need a doctor/nurse fairly regularly to see your mum and experience has taught us with my late FIL, docs don't get called often enough.

Am so sorry OP, it's a hard time. FIL was told palliative care too (people presume that means end of life is imminent and it's not) and he did live for another year in a London nursing home, he was not looked after well at all. I truly would try mcmillian to see if can get help and advice as a hospice would be the best. Hope someone helps soon and your mum more comfy than a hospital.

The issue is likely to be staffing. Virtually every nursing home I know of round here (I work in the sector) is struggling to recruit and retain nursing staff (and care staff for that matter). It’s a really tricky time right now.

I really don't get this. If they say they provide 'palliative care' then they should do just that.
As others have said this is a problem for the Discharge Officer at the hospital. It may be that they can find her a place but it may not be local.

CHC fastrack funding is for those expected to pass away within 12 weeks - nhs will block book beds in care homes they know can meet end of life care needs - ask them if they have referred for this and if applicable push for this. Don’t push for a home that says they can’t meet needs they are just being honestHospices can support care homes as well even those with nurses on site so if you can’t get CHC funding keep this in mind and ask for referral especially if you think a home isn’t managing things well

The syringe driver might be the issue. DH had one in ICU and when we were ready to move him to a ward to pass peacefully, none of them would take him with that in place. He ended up moving to HDU and was there less than 12 hours as it turned out.

Thing is if she can’t come home and no nursing home will take her then she will need to go to a hospice or stay in hospital. Is it private funded care homes you’re looking at or state funded as funding and staff might be the issue. I agree Aswell the syringe driver might also be connected as we found with m partners uncle no one would take one.

Nursing homes are privately run and as a result can pick and choose which patients they can accept. Where I live, the syringe driver would likely be an issue due to the need for trained clinical staff to use it.

It might be worth speaking to your local Hospice team for some advice. The nurses are fantastic.

It will be down to the syringe driver. I work in a care home and they have 1 or 2 nurses in the day and 1 at night to look after the whole building so the latest will be what they mean can't meet her needs. Plus you wouldn't want your mum in a nursing home for end of life. You want it to be as peaceful as possible and in a home there is always buzzers going off residents walking round and even into other rooms. And also as much care as she needs in a home carers are streched thin. I would keep asking about a hospice and see what they say. 💐

There is often a disconnect between hospital and hospices. Sounds like that is the best place for her. As others have said approach them directly or via her GP.

What some people dont seem to br appreciating is that a nursing home has to condider whether it can meet the needs of a particular client in the context of its existing client casemix. This will change all the time as people deteriorate andmove in and out.

Sorry, it was an idea

Hospices have to have very strict criteria due to lack of funds, very few have ‘respite’ beds. Most units offer a week or so for symptom management or end of life care, which in hospice terms means the last week or two of life.

OP, I'd get the hospice charity involved anyway, they may be able to cut through red tape for you with an outreach service. It sounds like a fast track care home place (free as its medical care) may be available if appropriate. Do you have a respect plan for her and a health PoA?

My dad had excellent end of life care in a nursing home, provided by the local authority. If she can't be cared for at home in a hospital bed with carers/nurse coming in five times a day then this may be the next best thing.

https://www.gov.uk/government/publications/nhs-continuing-healthcare-fast-track-pathway-tool/fast-track-pathway-tool-for-nhs-continuing-healthcare-guidance