Emergency advice needed, relative's life depends on it

[fkthesystem]

I'm sorry to be posting here but I'm in such desperate need of advice that I need the traffic. I'm also sorry it's long.

My grandmother has had a government funded place in a care home for the last four years. She is kept there under a DOLs following having been sectioned for self-neglect as a result of a combination of severe mental health issues triggered by Alzheimer's (and now, four years later, the Alzheimer's has started to progress). She has never had an estate or assets to pay for care and we as a family don't possess the means either.

Her behaviour over the four years has admittedly been challenging at times (rudeness, biting, etc) but DGM is <5' and genuinely not a physically intimidating person, even if she can be difficult. However her behaviour as she's deteriorated both physically and mentally, so over the last 18 or so months, has improved and she is mostly co-operative with the care home staff nowadays with some encouragement.

As far as we have been made aware, her care needs up until the last couple of months were mostly showering and encouragement to keep sanitary. She has only very recently required assistance with changing her own pads (we don't know if she doesn't recognise or doesn't care when she sitting in mess). She was fully mobile and didn't require any special diets.

A few weeks ago we were alerted that she hadn't appeared herself and hadn't eaten, however we weren't told until end of play on the third day that this was occurring. We said we wanted her to see the GP the following day as a matter of urgency, and the GP prescribed antibiotics for a UTI. The home were calling my DM on a daily basis saying DGM was refusing to take her tablets or drink, as well as still refusing to eat. DM was going over daily and getting her to drink at least a cup of water and take her tablets without much difficulty, just a lot of prompting. The staff said they didn't have time to sit and prompt her to drink.

On the fourth day they called my DM and said DGM suddenly couldn't swallow fluids and that they'd called 999 because they were concerned she might choke. My DM took emergency leave and raced over there, to find no issues with her swallowing, no signs of a stroke, etc. DM had told the home she was prepared to take DGM to A&E herself due to the ambulance wait times, and so before DM even got there, the home had cancelled the ambulance. DM called me while she was there as my partner is a paramedic, and the staff outrightly refused to speak to him saying they didn't care what he had to say and wanted her to go to A&E. There was also a doctor from the surgery at the home when the swallowing difficulty occurred and the home reported that the GP refused to see DGM because "she'd be assessed at hospital". DM ended up taking her.

On assessment at A&E, they found urine burns so severe that they immediately safeguarded the home and made an in patient referral to one of the dermatology teams. They said they'd never seen damage like it. She has since been kept in hospital on IV antibiotics for the UTI. They have also had SALT in who have advised DGM appears to be having difficulty swallowing food which is why she hasn't always been eating and now requires a softer diet.

A few days ago they declared her fit for discharge, however the home said they wanted to make an assessment first. DM asked what they meant and they said they needed to see whether she required a hospital bed and whatnot first, fine. However last night they called DM to say they refuse to have her back on the basis she now needs nursing care, and that was that.

Having to stay in hospital for a prolonged period of time whilst another care facility is found, and then the upheaval of moving to a new home/unfamiliar environment is legitimately going to kill DGM. I know what you're probably thinking, "why would you want her to go back to somewhere that let her get to that state?" and whilst I do completely agree that their care was, at least on this occasion, awful, I am also aware of how difficult a change in routine is for DGM's mental state. The hospital were going to discharge her with District Nurse support as well as regular SALT input/review and OT.

We are in shock that the home can refuse to have someone back when no alternative plan is in place, and thus she can be left in hospital unnecessarily. We believe the safeguarding made against them and the complaint my DM has made about the whole situation has basically made them not want her back now.

We genuinely don't even know where to start with getting help now. We don't know who to call to find her somewhere else because she is public funded, we don't know if there's anyone we can call who is able to force them to take her back temporarily with additional external support in place, we don't know if we should be phoning someone like the CQC or a solicitor or something as the impression we've been given my the hospital is her UTI likely stemmed from the same circumstances that lead to huge skin damage from urine burns.

Please help with any experience/signposting.

There's definitely no one else, she has no other family except me. My DM also has no reason not to share everything as she wants support rather than have to deal with it alone. There was an assessment originally but that was four years or so ago, as you say it hasn't been reviewed annually, or at least no one has contacted my DM to report and the home haven't mentioned that anyone has been in to see her (and my mum is proactive in asking the home questions). The safeguarding was only made ~2 weeks ago, so if there has been any involvement I think it's all been behind the scenes.

@fkthesystem picking up in the move part - my DF was in a similar position, he was moved from hospital to a care home after a fall at home. He had dementia. We never told him he was moving permanently to the care home, we told him it was somewhere he was staying after the hospital while he got better. He would have been very distressed if we told him he wasn't ever going home, and he no longer had the mental capacity to manage that distress. He also would have forgotten so we would have to have told him many times over, upsetting him each time. After a couple of months he settled(ish) in the care home and called it "my current flat". Perhaps something to think about.

Your hospital should have a discharge coordinator and links to adult social services. I found them good, but they were busy and assumed we knew/understood a lot of the process. We asked for a face to face meeting at the hospital and asked all the questions we had. It helped a lot in understanding the process, but obviously could not magic up a place for him. That was a frustrating waiting game, but that's the same for everyone.

Good luck. It is hugely worrying, I really understand how you feel.

I'm sorry that your DGM health has deterioated and she has shearing burns from urine on her skin.

Sometimes, a person's dementia can worsen and the enviorment they are cared in, requires changing. Her residential home sounds like they have been struggling with your DGM care needs for a while.

The discharge team and SS will be searching for a better equipped nursing home for your DGM needs. She may benefit from a dementia nurse specialist assessment or fraility assessment as well.

There are some wonderful specialised dementia homes. As well as advanced needs - EMI homes.

If she's under a DOLs then she should be having regular reviews, at least annually, with a social worker and NoK to check this is still required.

Hospital social worker should get involved now to find her a new placement. If this hasn't happened ask for it to.

DGM should be on the onward care team radar.

Just to clarify the comment that she's "refusing to swallow" - she's not. The strength, coordination or sensory element of her swallow is deteriorating, or it's just becoming bloody hard work for her to chew her previous diet - and she's either reducing what she's eating, possibly aspirating some of it, or both.

The SALT input should help with that - and I wonder if the texture modified diet combined with the previous safeguarding because they've clearly not been on the ball at all (and I would be willing to bet her weight chart has fallen off a cliff as well as a result) have quite possibly made the home think "oh shit" and serve notice on her placement there. Some care homes get really really funny and almost terrified at the idea of having to support people on different IDDSI diets and my team have to do a lot of reassuring them that "you are doing it right" with some stressed care teams at times!

You need to ring the social services team - it'll be on your local council website, and ask for a social worker to be reallocated to her as a matter of urgency (hospital might be doing this as well as part of their discharge team) so they can set the wheels in motion sourcing another placement that actually meets her needs because the current one sounds like an absolute shower of shit.

While she's in hospital make sure that the SALT team there clarify things like how to support her taking her tablets (or organising switching to liquids for medication) and finding out if they can be crushed or given in a spoonful of yoghurt for example (which tends to require them checking with pharmacy) so you've got all the information to hand for a smoother discharge when things are lined up as I know that there's likely to be a wait to be seen by SALT in the community for a review so the more information you have to hand - the better.

You need to call the discharge team at the hospital. She will come under the hospital social workers care now. They will find her a place in a nursing home but I’m afraid you have to be prepared for a long spell in hospital until one is found. As she is subject to DOLs order, the hospital have a duty of care to keep her safe. They will not be able to discharge her nor will your family be able to remove her without first having a suitable home to go to.

Thank you. Home care is legitimately completely unfeasible anyway. My DM lives in a very narrow terraced property with literally no room for a hospital bed downstairs and has no downstairs bathroom (DGM couldn't manage stairs). She also has no choice but to work full time to pay her mortgage/bills.

You just need to inform the ward of the situation and ask for them to refer to the hospital social work team. They will then contact you and talk you through it - they will find her somewhere to go, hopefully a much better home!

Please try not to worry. It will be sorted, you don't need to do anything more.

I just want to be clear that I haven't said she's refusing to swallow, the difficulty in swallowing has only just began to surface (so we've been made aware of anyway) immediately prior to hospital admission. She is not my first grandparent with dementia and my first was predominantly effected by dysphagia and aphasia. The behaviour I was referring to as her being able to turn on and off is her general compliance and willingness, which until this new development in her condition is what has, again apparently, been the reason for which she was handed the Alzheimers diagnosis.

You or your mother need to engage with the council adult social care team, they will then confirm her funding and tell you what options are available, the hospital will already be talking to them but it doesn't hurt to ask questions. Her needs have changed and she needs to be in a nursing home, this means she cannot go back to a care home they are not allowed to take her back.
I hope you find a respite place for her so she can leave hospital whilst a suitable permanent home is found.

I’m sorry you’ve got all this worry, OP.
However, moving her might not be such a problem as you imagine. We had to move an aunt (with dementia) from her ordinary residential home to one with a specialist dementia wing. She’d had only very mild dementia when she first moved to the first home, and they’d told us quite openly that she might have to be moved later if she started to bother the other (non-dementia) residents.
Which eventually she did, constantly in and out of other people’s rooms, among other things.

We were very worried about the move and whether she’d settle,,but TBH she barely seemed to notice. The new home was lovely and she was able to stay there until she died.

I understand this is upsetting but the care home cannot look after her.Her needs are too great now.You need to accept this.The discharge social team will look at her needs and find her the best place to be.This takes time but thisi is the situation now.Yes she will be unsettled at first but there is no choice.Sorrybut this is how it is unless the family can look after her in one of your homes and employ qualified staff round the clock.That is the choice.

If they don’t feel that they can meet her needs anymore then they can’t meet her needs. The care home will have staffing ratios based on the care they are able to provide, they obviously think that your grandmothers needs are now beyond what they are able to provide. The ward staff should already be liaising with the hospital social care team who will source a bed in a nursing care facility for her.

people can get skin damage from urine or pressure quite easily, sadly, and it requires a lot of work with the elderly to prevent this and it sounds like your grandparent was not the most compliant, and also sounds like not much family support either? Theyve clearly decided they cannot meet her needs anymore or keep her safe, so im not sure why you want her to go back. Maybe she could move in with family to take care of her if you think she shouldnt be in hospital?
I very much doubt the hospital had "never seen anything like" the urine burns.

My husband’s grandad has dementia or Alzheimer I can’t just remember which so was put in a home eventually . One day he said fuck this I’m off. He scaled the 8 ft wall only to fall off the bloody thing. Broke his leg in several places. After his stay in hospital he was not allowed back in the nursing home because he required two carers full time,because he kept trying to walk on his leg. So they put him in a psychiatric hospital as no one else would take him.

This is almost exactly what happened to us with my late DM, hospitalised from her care home with a UTI (not terribly severe) then the home refused to have her back as she was getting difficult about taking her meds and they couldn't cope with that.
A district nurse was coming in to the home daily to do them but that made no difference.
She had to be kept in hospital, fortunately not for too much longer, and a nursing home placement was found for her. She had continuing care under the NHS by this stage.
Actually, she quickly forgot about the care home due to her dementia and adapted to the new place quite easily -- it was not as nice as the care home although she definitely did need the nursing care. (She also needed a soft diet.)
So moving may not be the worst case scenario for your DGM but I understand your concerns and anger at the care home.

Yes. A similar situation happened with my Dad (who had dementia) and the care home said, after he was admitted to hospital, that they would not take him back as they "couldn't meet his needs".

Local Authority quite quickly found him a (lovely) home that COULD.

@fkthesystem S117 aftercare is there for the rest of her life, whenever she needs it.

They will have x number of spaces for x type of patients. If her care needs have exceeded what they can offer they are right to refuse her return. A hospital where her needs can be met is preferable to a home where they cannot.

Also, as a side note, advice over the phone from someone they don’t know was an inappropriate request and they were right to refuse.

It sounds like she has a significant change in care need triggering a checklist at the least, potentially a DST (as S117/Dols previously may follow slightly different path depending on local procedures). But either way it is fairly standard practice that when a change in need causes a decline which the home cannot deal with and results in hospital admittance a re-assessment and change in care placement is required. This is likely why the home pushed for hospital over GP, it forces the situation a bit more. Swallowing, mobility and skin integrity are all key points in a checklist. It's obviously unsettling for you all but this is standard and ultimately for her wellbeing. Additional funding doesn't mean that the residential home suddenly have the staff, ratios and equipment to provide nursing care.
I'm sorry, it's a very confusing process at the best of times as she's likely moving between social care needs to NHS / medical needs. You really do have my sympathy but your mum cannot continue with a situation where she is rushing to the home regularly to help her mum eat, drink and take medication, thats not sustainable. Give it time and see what they come up with.

That seems odd. I have LPA for an elderly relative with dementia, she is also in a care home and has DOLs in place. We have been told the DOLs has to be renewed annually and when that happens I am contacted by a social worker and a doctor who renew the DOLs. Are you sure she hasn't been reviewed? Maybe you or your mother aren't informed as you don't have LPA but I am always contacted and asked for my views.

Have sent you a DM.

Bedbound is not necessarily as difficult if, for example, a person is still continent, and can self feed. Your grandmother needs nursing care which is very different. Of course she can't go back to the care home, they've spread demonstrated they can't give her the care she needs.