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Emergency advice needed, relative's life depends on it

147 replies

fkthesystem · 04/01/2024 06:55

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.

OP posts:
Sirzy · 04/01/2024 07:00

It’s a tough situation but it doesn’t sound like her needs have progressed to the point a care home is no longer the right setting and she needs a home which can provide the nursing care she requires. Talk to social services and get the ball rolling to find somewhere her needs can be met.

widowtwankywashroom · 04/01/2024 07:01

If her needs have changed they are within their rights to say that. They clearly cannot offer her what she needs.
There will be a discharge co-ordinator/team who will be working with your relatives and local providers to come up with alternative providers.

widowtwankywashroom · 04/01/2024 07:03

However, provisions are scarce and this is why the NHS is struggling, one reason anyway, once declared fit for discharge, if no bed can be found, she'll remain in hospital.

quisensoucie · 04/01/2024 07:05

There isxa difference between care homes and nursing homes. The former tend to have care assistants rather than qualified nurses and residents are laregely independent, just need a bit of help with washing/dressing, and meds.
The latter are, as the name suggests, for those with clinical care needs; help with feeding/walking/self care/dressings, etc
Your relative will not necessarily have the care in her original home
Funding isxalso different, altho her care should still be paid for if she is still sectioned.
I appreciate hospital is not the right place, but the care home has to ensure it can do what is required

Tel12 · 04/01/2024 07:06

Surely she has a social worker? If not the hospital should be able to refer you to one based in the hospital. The home are within their rights to refuse to take her back if they don't feel that they can provide the level of support that she needs. I think that social services should be your first port of call. Then start looking at nursing homes. Good luck, hope you find something for her soon.

DontGoGran · 04/01/2024 07:06

widowtwankywashroom · 04/01/2024 07:01

If her needs have changed they are within their rights to say that. They clearly cannot offer her what she needs.
There will be a discharge co-ordinator/team who will be working with your relatives and local providers to come up with alternative providers.

This.

Unfortunately they can, and as you have experienced, will, just say that her needs have changed so they can't support her any longer.

Has the Hospital completed a Continuing Healthcare Checklist for her and identified her needs? If the home are saying they have changed and they can no longer manage she may benefit from being properly reassessed so the hospital discharge team can find her more suitable care.

Eta: I've just realised you said she was sectioned. Was she under Section 3 of the MHA at any point? If so she's entitled to Section 117 aftercare.

PickledPurplePickle · 04/01/2024 07:08

This happened to my gran too

If the needs change and the home cannot cope they are entitled to refuse to have them back

Call social services for help on finding somewhere they can look after her

My gran was sent to a short term respite care while waiting for a placement

Does she have dementia? My gran also struggled to swallow

LeroyJenkinssss · 04/01/2024 07:08

the home are right in that they can refuse a patient back if needs have changed sufficiently. It’s fairly common and there will be a discharge coordinator and social worker who will look into state funded care. She will remain in hospital until a suitable placement is found. as it state funded, you aren’t likely to have a huge amount of choice in picking the home.

having had a safeguarding concern raised against them, I can understand the home going by the book and doing a reassessment of care needs. Does anyone have an LPA for health & wellbeing?

fkthesystem · 04/01/2024 07:09

Sirzy · 04/01/2024 07:00

It’s a tough situation but it doesn’t sound like her needs have progressed to the point a care home is no longer the right setting and she needs a home which can provide the nursing care she requires. Talk to social services and get the ball rolling to find somewhere her needs can be met.

My confusion is in knowing that there are bedbound even, residents in her current home. DGM will not be bedbound, and I know it's about more than mobility, but it's things like this that make me not able to understand their sudden refusal to provide care when they seem capable of providing it to other residents with seemingly higher care needs.

OP posts:
SeattleSpacePlane · 04/01/2024 07:12

If the hospital were suggesting district nurse support was necessary to discharge her then this is pretty indicative that she now needs more than a care home can give her.

You can't force a care home to take back a resident who they can no longer meet the needs of because she needs medical care. Talk of solicitors etc is madness.

She needs to be moved to a nursing home. If it's Council funded, contact them for advice as a first step about how to find a new provider.

fkthesystem · 04/01/2024 07:12

widowtwankywashroom · 04/01/2024 07:01

If her needs have changed they are within their rights to say that. They clearly cannot offer her what she needs.
There will be a discharge co-ordinator/team who will be working with your relatives and local providers to come up with alternative providers.

I hope there is someone to assist but having spoken to the hospital, we've not been led to believe so yet. All that was said is that they would document the care home's comment - we have no further information on who to contact, or if someone should be contacting us, etc.

OP posts:
widowtwankywashroom · 04/01/2024 07:14

fkthesystem · 04/01/2024 07:09

My confusion is in knowing that there are bedbound even, residents in her current home. DGM will not be bedbound, and I know it's about more than mobility, but it's things like this that make me not able to understand their sudden refusal to provide care when they seem capable of providing it to other residents with seemingly higher care needs.

It's not for you to decide what care needs other residents have or don't have.

tokesqueen · 04/01/2024 07:15

The care home are quite correct.
Hospital wards are full of such cases.

Lougle · 04/01/2024 07:15

They are right to acknowledge that they can't meet your DGM's needs now. Your DGM needs a nursing home, not a care home.

widowtwankywashroom · 04/01/2024 07:15

Rather than concentrating your efforts/annoyance at the home that clearly didn't care for her, and cannot provide fir her needs, start looking at new places.

fkthesystem · 04/01/2024 07:18

SeattleSpacePlane · 04/01/2024 07:12

If the hospital were suggesting district nurse support was necessary to discharge her then this is pretty indicative that she now needs more than a care home can give her.

You can't force a care home to take back a resident who they can no longer meet the needs of because she needs medical care. Talk of solicitors etc is madness.

She needs to be moved to a nursing home. If it's Council funded, contact them for advice as a first step about how to find a new provider.

The district nurse input was suggested, and I quote, "to keep an eye on her", as in to prevent the home from letting her reach a state of skin damage again. It wasn't to actually administer any specific, nurse only care so we were told.

I mentioned a solicitor because we were advised if she hadn't been allowed to get into the state she was (and we knew nothing of it till the hospital found it, the home never raised any concerns with us) then most of this scenario could have been avoided.

OP posts:
SeattleSpacePlane · 04/01/2024 07:19

Bedbound residents are standard for care homes.

Residents with medical issues in swallowing, making it difficult for them to take adequate nutrition or stay hydrated, requires nursing support.

The two are completely different.

NestaArcheron · 04/01/2024 07:23

They are absolutely correct in saying your grandmother is not suitable for their care, she needs a nursing facility.
When you say she needed a soft diet and found this out in the hospital, the care home had been flagging she was struggling to swallow but when your mum went to assess she decided it was fine and just needed to be promoted. They have been telling you that there are issues and they've not been taken seriously.
Honestly, unless you have tried to provide care for patients who bite you, and hit you, and refuse to swallow, it really doesn't matter if they are below five feet. It's not their fault, they are confused and distressed and it is heartbreaking to see - but there comes a point that when needs cannot be met certain patients need specialist care.
You need to contact social services who will be able to assist you with a more appropriate setting.

widowtwankywashroom · 04/01/2024 07:23

OP with all due respect, your title is misleading.
Discharge co-ordinator and social workers are probably just returning to work. Believe me, once fit for discharge there will be a lot going on in the background sourcing alternative providers.

quisensoucie · 04/01/2024 07:23

Ask to speak to the discharge coordinator

olympicsrock · 04/01/2024 07:24

As everyone else has said, it seems clear that she needs nursing care ie nursing home and that the care home are right to say that she needs it and refuse her back. At least in hospital she will have appropriate care.
Focus on finding a nursing home , the ward manager / senior nurses will direct you to the right channels. Perhaps a complaint at a later date.

Sirzy · 04/01/2024 07:25

fkthesystem · 04/01/2024 07:18

The district nurse input was suggested, and I quote, "to keep an eye on her", as in to prevent the home from letting her reach a state of skin damage again. It wasn't to actually administer any specific, nurse only care so we were told.

I mentioned a solicitor because we were advised if she hadn't been allowed to get into the state she was (and we knew nothing of it till the hospital found it, the home never raised any concerns with us) then most of this scenario could have been avoided.

District nurses aren’t going to be sent in just to keep an eye on tbings. Like most services they are stretched the the brink!

fkthesystem · 04/01/2024 07:28

Tel12 · 04/01/2024 07:06

Surely she has a social worker? If not the hospital should be able to refer you to one based in the hospital. The home are within their rights to refuse to take her back if they don't feel that they can provide the level of support that she needs. I think that social services should be your first port of call. Then start looking at nursing homes. Good luck, hope you find something for her soon.

No, she's not had any input from anyone the last four years. This is why this whole situation has left us at a loss as we have no contacts or anything. We'll call SS a bit later, thank you.

OP posts:
fkthesystem · 04/01/2024 07:32

DontGoGran · 04/01/2024 07:06

This.

Unfortunately they can, and as you have experienced, will, just say that her needs have changed so they can't support her any longer.

Has the Hospital completed a Continuing Healthcare Checklist for her and identified her needs? If the home are saying they have changed and they can no longer manage she may benefit from being properly reassessed so the hospital discharge team can find her more suitable care.

Eta: I've just realised you said she was sectioned. Was she under Section 3 of the MHA at any point? If so she's entitled to Section 117 aftercare.

Edited

It was either 2 or 3, I will have to check. Is Section 117 aftercare available only immediately after discharge or for a period afterwards, do you know?

OP posts:
FlabMonsterIsDietingAgain · 04/01/2024 07:34

There is often a social worker employed and working within the hospital, if you look up the hospital that your Gran is in, do they have anything on their website that gives you contact details?