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.

In answer re carers allowance and attendance allowance, SIL receives this.

Thanks again for all the advice.

I hope you have better luck with fast tracking CHC. It still took us 3 days and that was with me finding a Nursing Home that everyone was happy with and had a bed and liaising with everyone, roughly every other hour throughout the day. It was intensive but worth it as DFIL was eventually moved and was much more content there.

There is no need to wait until Tuesday or to wait to speak to adult social care. OP has confirmed this is an NHS funded and arranged package of care, presumably under fast track CHC arrangements from the original hospital discharge.

Adult social care won't be able to help even with finding a nursing home so it's a waste of time even calling them to assist with this. It's like asking Tesco to sort out an issue you are having with Sainsbury's

The District Nursing team should be supporting with all of this until a nursing home can be found but no nursing home is going to admit over a bank holiday weekend, it sounds like they have increased the care in the meantime.

OP if its any reassurance you won't have to pay for the care and you can push back to the district team to ask for help in finding a placement. If you as a family want to have a look at nearby nursing homes that's helpful but ultimately it's the NHS who will make the arrangements and fund this and I'm sorry this hasn't been clearly explained to you all at this already stressful time.

OP has confirmed this is NHS funded care. The duty social worker at Adult Social Care won't be able to do anything and even if it wasn't NHS care adult social care still can't put anything in urgently over a weekend - they are not an emergency service and will only be able to suggest hospital admission or the same support it sounds like the district nurses have already arranged.

Where did she say that? She said MIL got NHS carers when come out of hospital - this is not the same as CHC and those carers are probably the DN team or the LA team all who will be trying to pass the care over to ASC as soon as they can.

As someone who covers EDT in the LA I work for, I assure you my advice is correct.

End of life care is not social services.

It isn’t correct.

If she recives this cant she stay with her for the time being? I would be suprised if she lasts 3/4 weeks, by the time you’ve sorted a nursing home it might beto late.

Ok, an update from DH, who has just arrived back from being with MIL the whole day.
She was asleep 90% of the time, barely ate, and was incoherent the small amount of time she was awake. So he thinks she may only have a few days (despite what the hospice said).

so compared to a few days ago, when she was saying she needed the toilet every 5 min, and trying to get out bed, he said that caring for her was easier. Someone from the hospice came when he was there, and are trying to get nurses to come in at night, for respite (although that would only be twice), and she’s also going to contact the NHS care service to coordinate additional carers going in.

So I think for now, her staying at home might actually be best, rather than a struggle for her a nursing home, which might actually only get sorted as she’s actually dying.

NB - The hospice lady said that ASC is the route to getting a funded place in a nursing home, not the DN.

There is so much contradictory information (demonstrated on this thread and from GP, DN, carers, hospice, hospital), it’s just crazy that there isn’t one central agency or website that explains these things plainly and simply. Even when I looked on the Age Concern/UK site, there wasn’t clear info on this exact subject.

@Larrythecatforpm theres no bed there, plus she’s on her knees with exhaustion already. Staying there would just be too much, I think.

As someone who has been a social worker for nearly 20 years, manages a frontline social work team including D2A hospital discharge and regularly has to clean up the mess and incorrect advice given by EDT Social Workers after a bank holiday weekend I can assure you that you are not correct.

OP I'm sorry to say the hospice lady is incorrect as well. If anyone else tries to get you to ring adult social care again push back at them and say that she is CHC fast track eligible and that the NHS need to be sorting this out (and it sounds like the DNs are in fairness!). It doesn't sound like there is any dispute about the funding stream to me, just a group of professionals who are covering a bank holiday weekend and don't have access to their usual systems and senior staff to give the correct advice.

I hope you all have a better day today.

@tigerbearYoy need to liaise with SS. Did hospice know you aren’t self funding? Maybe not. SS probably will resist paying and GPs wash their hands of this. If SS agree to pay, there might be a choice but possibly not if everywhere is full. You need to contact SS urgently. Maximum is 4 visits a day.

She doesn't need to speak to adult social care at all as they have no authority to do anything in the situation described in the OPs posts.

The care is currently NHS funded. Which means the NHS should be arranging it (and from OPs updates if you have read them it appears the District Nurses have arranged a care increase already).

The confusion appears to have arisen because a GP has (correctly) suggested the family consider 24 nursing care rather than a hospital admission if the care needs can no longer be met at home but has then completely failed to give the family the information about how this will actually happen and has left them floundering over a bank holiday weekend.

If you can’t manage her safely at home she really needs to be in hospital and then the hospital will kick social services into action to sort out a nursing home placement. Nothing happens quickly. What shocked us was the time it can take to get a funded home sorted. Basically adult social services send the details of patients over to their panel of homes and home can choose to bid or not. Quite a few came to visit my mum in hospital and then rejected her after assessment as they deemed her needs to be too great. This process took quite a long time. I didn’t realise how choosy some of the homes could be so that was a bit of a shock that she was effectively rejected from a few.

The difficulty you have is that adult social services can move at a glacial pace. If her end is imminent then she might have a better time at home but you need good support as a family to manage that and it doesn’t sound like you’re really there. You’d need to be assured that pain relief etc was in place for
her to stay comfortably at home. Only other alternative really is to go into hospital which probably will be worse in the short term especially if she’s stuck on a corridor but probably would get things moving with social services.

@hatgirl SS are supposed to assess home care needs. The NHS don’t provide carers.

You are completly incorrect unfortunately.
The NHS fund and commission home carers all the time for many different reasons including:

Fast Track Continuing Healthcare

Fully Funded Continuing Healthcare

Discharge to Assess (D2A) home pathways

Care where the only needs identified are health needs such as meds or compression stockings.

S.117 funded care packages where the needs are all health related

Those are the most common ones but there's those and many other circumstances where the NHS commission and pay for care.

Absolutely 100% this. We have a number of relatives who have care needs which require NHS support and they are fully funded as their conditions are so awful. I wouldn't wish it on anyone, by the time someone reached the levels to secure NHS funding quality of life is almost non existent. But in this case, end of life support should be being given.

@tigerbear I hope you managed to get through the weekend ok. Please keep us posted, thinking of you.

@hatgirlThe nhs support health care. That’s not the only care the elderly need! It’s very limited and doesn’t get meals, get people out of bed, wash them etc. You must live in an enchanted world if you think it does. I know of no one who has had personal care funded by the nhs. Many elderly have ailments that prevent safe living at home but the NHS is absent unless there’s obvious illnesses and many old people just never see anyone from the NHS.

Dad had NHS funded discharge to assess care that did exactly this

@countrygirl99 My DM was discharged 4 times with no nhs involvement or assessment. Nothing. No idea how people get so lucky. SS didn’t assess either. They didn’t visit once. DM was 93, 95, 98 and 99. Absolutely zilch despite discharge papers saying there was a role for GP. I know others have had exactly the same dire service. We had to find care (26 attempts) and DM paid for it. Total nightmare.

An enchanted world?

No - just 20 years experience of working in hospital discharge, sitting in CHC funding meetings and working with the local ICB to identify when its become their responsibility to commission care packages.

It's really not that uncommon. There's probably at least 30 people a week discharged just from my local hospital alone with an NHS funded package of care either through D2A or FTCHC. I know this because I sit in the meetings every day where it's planned!

I'm sorry if you had a bad experience but that's absolutely not typical of how things are supposed to work - even self funders are entitled to D2A or a Care Act Assessment.