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.

It can be GP, nurse, social worker AFAIK, has it changed?

Yes. Covering the entire area the council covers. Its an emergency only line. Can almost guarantee you they wont have time to chat, nor will they be able to make anything happen if it's not an emergency.

Lots of misinformation as always. Suggest speak with the council on Tuesday, also ask the palliative care team if they've considered fast track funding and if she would qualify. And a good idea then to also contact a charity in the know e.g. local age uk, carer charity etc. for impartial access to information.

This sounds like above and beyond the level of care that adult social care will arrange or that you as a family should be providing.

It sounds like she should be in hospital and if a decision has been made that isn't appropriate then the NHS should be funding and arranging something else that is.

I'm so sorry you have been left over the bank Holiday weekend with no clear plan in place.

The district nurses can complete a CHC fast track assessment but it's unlikely any care home will admit over the weekend. The district nursing team/ hospice at home team should be supporting instead and if they fast track her they can increase the care with the care agency as well.

Waiting until tue to speak to adult social care is likely to result in you being given the same advice. Social services aren't an emergency service - if there has been a rapid deterioration in health requiring an urgent increase in care then the NHS should be arranging and funding the care.

GPs are often completely clueless about arranging care and the different funding streams.

I'd basically disregard anything a GP has told you about who is responsible for arranging or funding care because they frequently aren't even aware of the powers their own trusts have given them to arrange care for health related issues.

It's not a ploy though, it's overworked professionals with no resources and limited budgets - ASC will (rightly) be pushing it back to the NHS to arrange care for someone who is rapidly deteriorating and the NHS professionals outside of the district nursing team won't deal with it often enough to understand the processes properly so wrongly advise families to speak to ASC and round the merry-go-round everyone goes.

I'm sorry you are stuck in the middle. District nurses are the key to this though- ring them tonight/tomorrow and ask if she can be fast tracked.

Look for hospice at home services. Perhaps MacMillan or Marie Curie nurses could advise you.

No. Adult Social Care will have to find one. You could end up just wasting all your time and energy searching for one yourself. Hope ASC find one that is good and not too far away.

Adult social care are able to help 9-5 Mon -Fri (excluding bank holidays) for planned admissions into residential care as an outcome of a Care Act Assessment and have clear processes in place for commissioning this.

Adult social care can also arrange 'emergency respite' if e.g. care arrangements breakdown such as a carer has been admitted to hospital and can no longer provide the care for someone who is otherwise stable themselves.

For people who have had rapid changes in their physical health requiring an urgent increase in their care for medical reasons then this is initially the responsibility of the NHS to arrange. Either through an admission to hospital (standard) an increase in visits from the district nurses if it can be managed at home, or admission to health funded 24 hour care via fast CHC funding, local hospice arrangements or any other local NHS funding arrangements GP have access to arrange a temporary admission into 24 hour care for medical reasons.

Just because many ICBs don't provide their GPs with the correct advice and information about these options and just because many ICBs often have terrible and chaotic commissioning arrangements 'in place' (or typically they don't have anything formal in place) doesn't mean they can unlawfully push a medical need back on to Adult Social Care or in this case they family to arrange.

In this situation I suspect it's been recognised that this lady is Fast Track CHC eligible and it's been reccomeded the family look for whichever 24 hour nursing care they prefer but the communication around this has been terrible and they shouldn't have been left over a bank holiday weekend with no plan in place and no additional support.

No they won't. It will be disregarded in the financial assessment.

Thanks for all of the advice, much appreciated.
Hopefully SIL’s talk with ASC on Tuesday will be fruitful. I think that from today, additional carers are going in, so one in the morning, one in the afternoon, then another in the evening.
DH will be there the whole day, to make them lunch, and also make sure FIL is up, showered and dressed.

That's good news. Who has arranged / is funding the additional care visits?

If the situation is such that you can't cope over the weekend, your only option is to call 111, or push for the GP to support/refer on Tuesday. It sounds like there needs to be an end of life care plan put it in place, with potentially nursing support provided at home in the absence of any specialist care places. Am gobsmacked your GP hasn't discussed this with you. The social care team are likely to bounce you back there anyway as these are all considered health care needs (except the dementia) so my advice is a two pronged approach. Chase both social care and your GP.

What a terrible situation for her and your family . I can't believe a hospice is telling you to look elsewhere and also being told to not go to hospital. If she is end of life situation then isn't that hospice and if she is critical then wouldn't she immediately be admitted. The fact that she is not financially able to afford private shouldn't matter . This is not America . So much for the NHS .

This situation is the type of issue local MP needs to address , real life that people have to deal with .

I have nothing useful to say but I hope your SIL quickly gets some help .

It’s likely that care will be increased to four times daily first before they even think about a nursing home.

4 times daily is deemed enough to deal with the toileting issues, even if you think it isn’t.

Appalling isn’t it. It means an adult can be left soiled for hours on end between carer visits. It would(rightly) be considered neglect if we did that to babies.

Your MIL is nearing end of life. This is not for Adult Social care it is NHS responsibility. You are being let down by the health service.

I don’t believe it’s the case that because she’s at end of life she will qualify for CHC, though I could be wrong.

Leaving aside end of life, if her needs can be met by carers rather than nurses then she wouldn’t qualify. Her needs are intense but not complex so I would assume she would qualify for CHC. My father was not diagnosed as being at end of life but had dementia, diabetes, was completely bed bound and had to be moved with a hoist, couldn’t swallow, had pressure sores, was deaf, was completely unable to tell if he was hungry or thirsty and he didn’t qualify. He could move his arms (pointlessly) so he wasn’t immobile, and while he had no cognitive ability he wasn’t hallucinating or delirious so didn’t meet the most severe categories.

is anyone in the family in a position to pay for more carer visits or a nursing home while the house is sold? It doesn’t sound like it would be very long term?

ASC will give you the list of homes that they will pay for. Depending on the area, you may actually get a choice- we were given the list of where our council funded beds and went and looked at two that had spaces and we got a place that we wanted for our relative.

Regarding a charge on the house: they shouldn’t do this if another relative over 60 lives in the house. In our case, the house is discounted from care costs as relative’s wife and adult child live there but that would change if the wife went into care.

End of life care is usually funded. Is she under the local District Nurses? They sorted out the funding for us when we were in a similar position.

They usually sorted out the Nursing Home for you too.

My DH is currently receiving EOL care at home, the care package was applied for by the District Nurses. The hospice may provide more advice if you let them know your full circumstances and in our area they work closely with the District Nurses.

Honestly, the quickest solution is to phone 999 and get her taken to hospital. It’s certainly not an ideal solution though. An ideal one would be that adult social care would be able to place her in a nursing home within 24 hours, but that’s never going to happen. I’m assuming she was diagnosed with a fractured pelvis whilst in hospital and they then discharged her with carers being put in place? If so, it sounds like it was an unsafe discharge.
Once in hospital, you then need to keep telling the discharge team that having attempted to support her at home with 3 carer visits that is no longer sustainable, your DF is not able to take care of her and there is no family available. They will then have to look at a nursing home directly from hospital.

Hospices are not NHS funded, they are charities and are full to bursting. Hospitals do not provide end of life care as such.
The whole system is totally broken and the only way to get direct support is to take them to A+E.

Get in touch with age uk. They can also get discounted sheltered homes and nursing. They did for my nana.

Im sorry your MIL is so poorly. If her GP does not advise surgery for the hip fracture she needs full Nursing care. Are the District Nurses involved?The person who said explore Continuing Health Care funding is right. If your MIL is close to end of life you can ask the GP surgery or DNs to apply for a “fast track” assessment. This would fund a Nursing Home and you should ring round now to get a head start on finding one.
If your MIL is not eligible for “Fast Track” (what lay people think is end of life may not be the same as the criteria) any involved registered health or social care professional can do the “screening” assessment and this is the gateway to full CHC assessment. If there’s an allocated Social Worker it will probably fall to her. I’m certain she will screen in for full CHC assessment. This will involve an assessment meeting
that your MIL and/or family would attend.
If your MIL isn’t eligible for CHC - the bar is very high - and she needs an LA funded placement, there may not be any choice unless family are willing/able to pay a “top up”. The days of three offers are probably long gone though there may be a few authorities that still manage this. The LA are only obliged to find and fund (with a combination of her assessed charge and their contribution) a home that meets her needs.
I can hear that this is really urgent now - in the meantime does your LA have short term care service which aims to find alternatives to hospital?
Good lunch, this sounds like a really difficult time.

Fast Track continuing healthcare is for exactly this situation

It's entirely different to fully funded continuing healthcare and has totally different thresholds and assessment process.

Fast Track CHC basically just needs a district nurse to fill in a form and it's pretty much instant funding. It's absolutely nothing to do with Adult Social Care and nature/intensity/complexity and unpredictability are not part of the assessment, it's not about nursing needs it's a simple assessment of whether the person is considered to be end of life or not.

@Soontobe60 Really ? I had no idea . What about palliative care , is that not available under NHS . How awful . I guess I never had to deal with it and have often contributed to McMillan Nurses but never knew they were completely donation funded .