Going round in circles with NHS and care home

[TheCaptainsLog]

Hello all. I've name changed for this but have been around MN for well over a decade.

My elderly (95) relative has been in hospital since Easter in two separate admissions. The one attempt to discharge her home saw her back at A&E within hours. The admissions have been due to falls and trauma, but there are many other co-morbidities. It has now been decided that she cannot return home and must go to 24 hour care.

The hospital discharge team say that she needs to be in a residential bed as her needs can be met without nursing, but then go on to say that it should be a dual registered home with nursing available as well. There are six such homes in my local authority and only three of them have beds. All three of them have declined to take her, saying they can't meet her needs. One says she's clearly demented (true - it's blindingly obvious but not formally diagnosed because the Older Adults Community Mental Health Team have flatly rejected seven referrals in the last 18 months) and needs a dementia bed. One says her needs are for nursing, which the NHS denies even though they've told me to find a home with nursing available. The third says they can't provide 1-1 care. The hospital says she doesn't need 1-1 even though they've had that on the ward for the last ten weeks!

Anyone have any advice?

Does she have an assigned social worker?

is she self-funding or is this council funded?

the hospital are probably recommending a dual registered home so that when her needs increase she can move from residential to nursing without physically moving if that makes sense.

however if there are only three homes that fit that and they won’t take her then It sounds like it’s not possible.

usually there is a discharge co-ordinator involved in the process - can you get back to them and state that the dual registered homes have refused her and where do they recommend going from there?

Hi, thanks for the reply.

She had a social worker in the community, but it is the hospital social worker who has been doing the running this time. Not sure if either could be described as 'assigned'. The hospital social worker is part of the discharge team and has been liaising with the homes; her next move is to try out of area homes as well as the ones that don't have beds (I am not making this up).

She'd be self-funding. I have a LPA for her finances and they (NHS and council both) are very eager to get me to reach for the chequebook, rather less eager to actually talk to me about my relative (a distant one) as I don't have POA for health.

There is a long running pattern where the NHS - both in the community and in the hospital - just aren't being real about her needs and prefer to push her towards (self-funded) social care. Even her community social worker suggested that I start legal proceedings against the NHS for delayed diagnosis.

I would step back totally and say to them that once they have found her a suitable care placement to let you know and you will liaise directly with the care home about payment.

It is an awful situation but the responsibilty is theors if ypu dpnt have health POA.

i was going to say this. It’s not your responsibility to get her into a specific home or care set up - just to organise the financial side. Do you feel an obligation to do more than that?

Thanks, both. I am the only family member who has had any contact with her in more than ten years and until we started using domiciliary care in January was her only carer. I did all her shopping, prepped meals, took her to appointments etc because if I didn't then it wouldn't get done. So yes, I do feel an obligation to make sure she is well looked after.

I visited all three homes and had made it clear I wasn't happy about one of them (CQC rating of 'requires improvement' and the person who showed me around made racist remarks to me) but it was made very clear that my role is to pay and not much else.

@TheCaptainsLog what does out of area look like? Is there a boundary not far (e.g. South East) or would out of area be hugely inconvenient distance?

Thanks Finite. We're talking about one of the ten boroughs that make up Greater Manchester so out of area isn't necessarily a massive hardship.

Do they offer a discharge to assess pathway? It sounds like she needs further assessment with the community team before she can be placed in the right setting. Ask to speak to the discharge coordinator and see if you can get her put in a home which can meet her needs now, with the aim of a full assessment within 6 weeks.

Thanks, Thingame. A six week assessment placement in a home was discussed but rejected on the basis that it wouldn't provide any more information than what's already available and might then require another move. Ultimately no residential home will touch her but the NHS just will not admit that her needs can't be met in one. Even the NHS won't go near her if they can avoid it.

If she's self funded you just need to find her a nursing home placement yourself.
It's not nhs or social services who find the bed.
If residential homes have already said not appropriate for them go directly to the nursing homes and have the conversation with them.

Have the hospital done a CHC checklist? If nursing homes are turning her down and saying she needs 1:1 I would wonder if her needs are complex and unpredictable enough to meet the criteria for this?

There are homes which specialise in the care of people with dementia even those with challenging behaviour,

Thanks foodtoorder.

The NHS doesn't accept she needs nursing! Since they won't put it in the assessment no nursing home will entertain it, presumably because they're worried they won't get paid for the nursing.

I asked for the CHC checklist on 18th June. Silence since then. She's on 1-1 on a general medicine ward in a DGH but the NHS are adamant she doesn't need it, so won't put it in the assessment/referral!

I'm absolutely pulling my hair out here, and I've been bald for 20 years.

No dementia diagnosed. CMHT refused to accept a referral seven times in 18 months.

Edited to add: no challenging behaviour. This is someone who can't lift a cellular blanket never mind get herself out of bed, can't articulate any coherent thoughts, and sleeps virtually 24h a day.

If she's self funded you just need to find her a nursing home placement yourself.
It's not nhs or social services who find the bed

This isn’t true in a hospital discharge situation. This is 100% the hospital social worker’s problem.

Have the hospital done a CHC checklist?

Don’t over-complicate things right now. Just leave the hospital social worker to sort this out.

This doesn't make sense, if she sleeps 24 hrs and can't get out of bed the NHS hospital wouldn't have her on a 1-1 (worked in acute hospital myself for 20 years) but agree with @HeddaGarbled, it's the hospital discharge teams responsibility to find her a place to be discharged to so step back and leave them to it. There's no necessity to get yourself stressed about it, your relative is being cared for in the meantime.

There should be a liaison psychiatriy service that will see people who are in a general hospital. Can you ask for her to be referred to them? If she does have dementia, getting a diagnosis might help.

Thanks Mossstitch. She can't get out of bed safely but keeps trying, and falling, hence the 1-1 obs. She's in a private room at the hospital because of infection risk and the hospital maintain that combined with the falls risk that's the only reason she's on 1-1; the home pointed out she'd be in a private room there come what may and would therefore need 1-1 for the same reasons. The NHS disagrees!

Just want to add my own experience. This is England and recent. My mum was self-funding and it was the hospital social worker who found her a placement. They paid lip-service to consulting us but it was ultimately their decision.

They used an agency to identify available beds, can’t remember the name of the agency and don’t know what the agency’s relationship with the nhs was. Assume it was one of the private companies the nhs out-sources various functions to.

The social worker was under pressure to find mum a bed in a care home as she was bed-blocking at the hospital.

That sounds awful. Id suggest writing to her MP, particularly about Camhs rejecting the referral.

@TheCaptainsLog you are paying directly to the nursing home so they should make their own assessment if she is suitable or not.

It all sounds a bit bonkers so it would be worth contacting PALS in the hospital for support if you feel you have exhausted all support at ward level.

A checklist is not usually accepted if completed in hospital as there are many reasons why someone presents differently. However someone should have explained this to you or given reasons why it's not being completed.

@TheCaptainsLog also coming on here to say that it is absolutely the hospital's responsibility to discharge, and they need to discharge to assess. The fact she is self funding at this stage is a moot point. They are clearly not assessing her properly and she needs a review by the community team.

Keep pushing. They tried to do this to one of mine in laws, claiming they had x, y and z, but it wasn't until they were properly assessed in the community we got anywhere near a clear picture.

Speak to PALS if you need to.

Hi everyone, thanks for your insight. This is an area I have no experience in and it is so useful to hear from other people who have.

I met the consultant today and to say that the hospital have had a damascene conversion since I started pointing out the cognitive dissonance of their position is something of an understatement: my relative is now going to palliative care in a nursing home with fast-track CHC funding. Which is quite a turnaround in 24 hours.