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.

Just popping in to point out that many hospitals and local authorities have got rid of dedicated hospital social work teams over the last few years, post covid there aren't that many left.

Many hospitals now operate a Discharge to Assess model where the hospital discharge people once they are medicallu fot under a nursing/residential/home care pathway and pay for that care for 4 - 6 weeks. Adult Social Care then have that 4 - 6 weeks to complete their assessments and for Continuing healthcare to be considered.

Basically don't be surprised if you don't get much of a response from adult social care at this stage - they may need to wait for the Discharge to Assess referal/trigger from the hospital before they look to allocate your GM to anyone. She may be discharged by the hospital straight into nursing care to await further assessment and discharge may happen very quickly without much consultation with family.

It does seem that the care home had started to struggle with her needs prior to admission- I am an ex nurse - they were honest with you fair enough - at least they admitted that staff didn't have time to sit with her while she was eating and drinking. She was admitted to hospital with a serious uti and urine acid burns - this shows that the care was not being given properly.
The hospitals decision to send her back there with district nurse support sounds more like a compromise on their part but with the best will in the world most of the care will still be done by the care home staff not the district nurse. The care home are right to say they can't cope with her needs. They obviously don't have enough staff or staff with the right level of nursing training.
What should happen now is that your DGM - will stay in hospital until social services and discharge care team can find her somewhere new. Where she goes will depend on level of nursing needs and finding somewhere that can be funded.
I don't understand from your post why you would want her to go back to the old care home ?
Why do you want her to go back to somewhere where they can't cope with her needs?
If you are worried about a decline in her mental health in a new facility or that by staying in hospital while this is sorted out will make her worse- another option you could explore as a family - would be to take on the care yourselves?
Is there anyone in the family who could take DGM in their home and care for her ? People's situations change and what wasn't possible four years ago maybe possible now ?
If you are worried about her declining mental health if she is moved then may be it might be possible with adaptions at home and community care support to look after her as family ?

OP, you say this has only happened in the last few weeks. Sadly, very often people deteriorate quite rapidly and move from doing OK to not doing well at all. I take your points about the burns and not being supported to drink. The care home staff will do their best to manage this as much as they can until they can’t. It’s very like people managing at home until suddenly it becomes apparent they are not managing any longer. Things get to a critical point and suddenly everything needs to change. It’s the nature of ageing and all that goes with it. It is very sad as well as upsetting at the time but, as others have said, she’s actually in the right place at the moment to get moved into a home that can provide the care that she needs.

Contact the Emergency Adult Social Care team. They come and do a variety or assessments or co-ord with hospital on them. They then can determine what needs to be in place and work with various people to keep things together. I think they work for 16 weeks then hand over to general social care at which point things should be in place for her. I too would forget the home she has been in for now and work towards what else there is.

Outside of that and once she is settled I would make official complaints against the care home, senior staff at the home, the GP and anyone that saw your grandmother in those last couple of weeks. That is shocking treatment. THey may not be a nursing home BUT they still have a duty of care they have failed.

In my experience, after 3 parents in similar situations etc, individuals care the system doesn't and works against you - you really have to be the squeaky wheel and advocate for your grandparent without taking responsibility for her or her care and be determined about that.

Really sorry you’re in this position, I work in dementia care in a home that has 4 units and it’s common for people to move through the different units as their needs change . As pp have said changes can happen rapidly . Can you tell us roughly where in the uk you are? You might get some good recommendations. You’ve had some very good advice already, you’ve mentioned your dgm mobility several times and the fact her old home has several bedbound residents and I just wanted to add that bed bound people are often a great deal easier to look after than someone with dementia who is fully mobile. A person with dementia who hits, bites, runs away, refuses personal care etc Is quite the handful . We have had residents who are tiny , barely skin and bone , and they are surprisingly strong when they are upset or angry with a decent right hook on them! Most of us have had a black eye or 3. It is probably for the best that your dgm is in hospital and I’m sure she will settle in to her new home when the time comes. Best of luck with everything .

Sorry to hear about your DGM @fkthesystem

As others have said, the hospital discharge team will have access to a social worker and it'll be them who will arrange placement.

How has she been getting on in the hospital? If she's been able to tolerate the change of environment from her home to the hustle and bustle of the ward then I'd be less concerned about her being discharged to a different home that better suits her needs.

Care homes struggling to manage the needs of their patients is not a new thing ime. Almost a decade ago I was working for a care agency and one of our regular visits was to a gent in a care home (different organisation) to help him eat his meals. The staff didn't have the time.

@Babyblackbear78 , yes, there were a few bedbound residents in my DM’s (dementia only) care home, but it wasn’t a nursing home and they didn’t need actual qualified-nurse care.

My FiL however (also dementia) eventually had to move from his residential home to a nursing ditto, since by then he needed a catheter (which he kept pulling out 😱).

This may be the way the services locally to you work but no such team exists in the 3 local authorities that work within the two ICBs (hospital trusts) I am linked with.

It's also not an emergency - OPs GM is safe in hospital and this is a very normal situation and there will be very clear processes in place in the hospital and adult social care to respond to it.

If your DGM has dementia, the home will need to be registered as being capable of dealing with EMI (Elderly Mental Infirm) residents.
If she requires nursing care, then they must also be registered as having sufficient nursing staff available, etc. Sometimes a larger home will have a nursing wing, or sometimes it will be a separate home.
Your way forward is through the local social services, who can assist in finding a suitable place.
My DM was moved several times, not our decision.

Also, she wasn't coping in her previous residencial placement and neither was the home. Not only that but it was safe guarded. No way she should go back there.
Talk to the nurses they sort out the social side. I would guess EMI bed might be needed

residential

I want the best care, of course I do, but I'm also trying to make sure I see it from DGM's perspective and that is that a huge upheaval of what is effectively her entire life will be far more traumatising for her than sub-par care. Are you sure of that? The skin damage from urine will mean she's constantly in pain.

She will settle into the ward, then will think that is her world and not want to leave. We see that experience daily. It's best to get her the best placement for her needs. Then there will be another adjustment, yes, but she will be cared for.

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.

It's not unnecessary though @fkthesystem , she is in hospital until a suitable place can be sorted out.

@fkthesystem She'll be ok- probably upset at being in hospital, but it won't kill her or anything.

I work kinda of in this area. The care home for whatever reason seems to have decided when they called an ambulance and refused to listen/speak to anyone they weren’t going to care for your DGM anymore. Sadly this happens a lot! Ask to speak to the complex discharge team which will have a social worker as part of there MDT. From your post I can’t identify any nursing needs that would mean a care home would be unable to meet her needs. I’m so sorry your DGM will go though this upheaval of moving but on a brighter note she will hopefully be somewhere that can meet her needs and actually care! There’s no way with decent care urine burns should occur! Sounds like a respite bed while assessments take place is the likely outcome. Hoping things work out for you all xx

I'm so sorry this is happening to your family.

I can only echo what others have said, your DGM needs a social worker to advocate for her.

If the home isn't a nursing home then your DGM isn't going back there, the home would need to employ a few nurses and to be honest they can't afford that.

I can understand you want your DGM in a familiar place but it really is not in her best interests.

'Mobility' is a bit of a red heading. Someone bedbound but can roll themselves over needs less care than someone who needs to be turned in the night.

The current situation will not kill her. I'm sorry for being blunt but she is nearing the end of her life. The kindest thing you can do for her is to allow her to have the best possible death. She won't have a peaceful, dignified end in a place that cannot meet her needs. Surely you don't want her to die of sepsis, covered in sores and sitting in her own urine? Far better to expire in a hospital bed with doctors and nurses at hand or in a specialist home with an RGN on duty 24/7.

The care home are actually being more responsible by saying they can’t meet her needs. I don’t know why you would want to force her somewhere that led to such neglect.
The hospital should have a discharge liaison team who will support with sourcing options now for alternative care provision. They should also complete a Checklist/DST to check for eligibility for continuing health care funding as her needs have changed. Even if she is just entitled to FNC it can help.
If she has previously been detained under section 3 because of her dementia she should be entitled to section 117 aftercare funding so do check this.
it’s a horrible situation but sadly a very common one. The best thing is to ensure when DGM does move it is to a setting that can meet all her care needs which is what the reassessment of needs should ensure.

I'm sure if she has been sectioned in the past (section 3) she is elligable for 117 aftercare? Check with social services.

@hatgirl not local to me at all, but when checking my local auth worked this way, as did Lewisham and North Wales (we are somewhere between those) so plenty out there that do. We were advised even following discharge from hospital this was the process to follow and we did and it worked for us. In Wales system seemed to work better as District Nurses "owned it" and co-ordinated everyone. I appreciate different areas operate slightly differently but we were asked for our experience and hopefully OP now has enough clues to know what to ask for and who to approach. Yes hospitals should have processes in place but often they are not following them and certainly not sharing how they work with those with time to pursue them to ensure relatives get to the care they need. Even if she did contact people and they were the wrong ones - hopefully they are more helpful and have more empathy than so far and point her in the right direction. For the ordinary non NHS folk this sort of thing is a minefield and often sprung on us when we have least time to sort it out, it is wrong to have lots of different processes in place and no commonality, makes life very difficult.

I was thinking the same thing - and if her Alzheimer's is fairly advanced she might well not even recognise the old care home if she went back.