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.

I think sometimes when in a care home as you say this just happens without contact with NOK taking place. Definitely worth looking into whether this is the case.

OP I'm very sorry you are in this situation.

It's a balancing act between physical and mental needs. We kept our DGM at home longer than we should in hindsight because she never wanted to be in a home. She was getting so many infections, going in and out of hospital and my mum as an only child nearly lost her mind from all the stress. Once she was in the right setting the infections lessened, she was more comfortable and had better access to medical treatment.

She had dementia but coped with the move as well as can be expected eventually going from caring to the nursing side. It sounds as though you are very actively trying to avoid what I'm afraid is inevitable, she will very sadly pass away at some point (I do hope at the most appropriate time for her given her challenges). The question again is about balance. These decisions need to come from a less emotive place. Its something that I had to convince my mother as looking only at the emotions of it all led us to making decisions far too late. It's incredibly difficult I know. I do wish you and your family well and hope you get the necessary input from SS.

Your GM cannot be placed back into that care home, they have already proven unable to care adequately for her. I don’t understand why you want that. It won’t be your decision either, the DOLS decision is taken by a social worker in GMs best interests. Her best interests are not served returning to a home which cannot care for her. The urine scald injuries need to be reported to your LA Adult safeguarding team, the SW will likely do that anyway. You and your family need to be prepared, the swallowing issues is a common progression of dementia as the brain is damaged, so she will likely be getting pneumonia from inhalation of small food particles too, and a bout might take her in future, eventually. Your GM needs nursing care now, her last home cannot provide what she needs for the future. Letting go is hard OP, her talk of dying is scary, but not wrong, you and your mum can engage on it if you want whilst she has some capacity to discuss end of life wants. I recommend you read Atol Gawande book on end of life care. I’m sorry this is happening, it’s a horrid disease to lose someone too, take care of yourself and mum 💐

I’m sorry you are in this situation. I’ve been there with my DF.

Actually, fully funded residents are quite sought after by nursing homes. It’s guaranteed income. Also, in my area there are more places available than pre covid. FIL was in an exceptional home with a long waiting list 5 years ago; they are now advertising for residents.

I was also desperately worried about by DF settling into a new home. He had advanced dementia. When he arrived he was very disoriented and was designated a one to one carer for around a week. The home manager said, ‘it takes a week for new residents to settle’. I was sceptical but she was correct.

Now I disliked that home a lot but we had next to no choice due to his needs and him blocking a hospital bed. My honest advice is to get busy finding the nicest nursing home you can find and arrange- with SW support- her transfer as soon as possible. Also spend as much time as possible with her in hospital to keep her company.

Its all so difficult but she can settle into a new home and they should be able to meet her needs more easily.

There is a difference between a resident having high care needs and needing nursing care. It sounds like your DGM will be better off in a setting with a higher ratio of qualified nursing staff OP.

OP feel for you, but leave it to the hospital, as a PP said their will be work going on behind the scenes you are not aware of (and unless you have POA may not know what is happening until it happens).

As she is state funded you don't get to do the choosing of the provision, thats sorted for her, and they will want to sort it to get the bed free.

The home she was in don't want her back, partly because her needs can't be met and partly because a complaint has been made - they can fill the bed with someone who is no problem, basic business I'm afraid.

Sorry to hear what's been happening. You've got lots of good advice regarding correct types of care home for her and processes. The bottom line is she needs to be somewhere where staff both care, and are able to care, for her needs.
Regardless of if the home have or haven't looked after her well, they have been correct in how they have handled the end results, re A&E, GP staying out of it, and not talking to others about her, regardless of profession. It maybe that NOK isn't properly registered with SS and the DOL has been being renewed using no NOK systems. (I've been used as a frequent visitor & ex neighbor to renew a needed one)

I've been involved in care homes placing someone in them, and I'm disabled and have had care homes used as an alternative setting to avoid bed blocking following hospital stays.

Starts with 'more than step down care is needed but less than hospital, so nursing home required, (especially as poor gag reflex.).' It's agreed, then when one can't be found in budget, becomes 'patient's very independent so a care home could do the same job.' It's been a horrible eye opener.

There are cultures of poor practice that build up, (IME especially when they accept DOLS placements.) I've seen first hand how good carers are unable to provide care because of staffing issues, costs and culture and the questionable staff, and extreme sometimes dangerous cost saving measures, then set the tone, and it's grim stuff well hidden to visitors.

Once physical evidence of poor care comes to light, getting the person out fast, under 'damage has been caused by the person being beyond their care remit', rather than their practices, is standard. (I've actively used it to get out.)

I know all this is horrible, but trust me the last thing you want is for your aunt to be in a place that doesn't want her. Yes change of home can cause damage, but a lot can be done to ameliorate it. Being in a place where they want someone gone, becomes self fulfilling one way or another, and is no way to go.

I know that you're worried, but this will be a good move for your GM. Do you really want her going back to a place, however familoar to her, that left her with the urine burns you've described. I'd be moving hell and earth to avoid her going back there, so the fact they won't take her is good news.

Hello- im so sorry for what you’ve all been through. The hospital should be discharge planning and helping to get a new Care home placement, have the occupational therapy team had any input in the hospital? The other thing you could do is call your local authority social services and explain the situation and they should help with getting placement and possible liaise with the hospital. I’m a district nursing sister and we look after many care homes so I’m unsure why they are refusing to have her back when the district nurses would be more than happy to help?

On a slight tangent but this is precisely why everyone should have LPA set up early on! It can sit dormant for years (Dh and I are in our 50s and have it set up)

I would also put a formal complaint in about the moisture damage and lack of care

We've had two relatives with dementia in firstly care and then nursing homes as their needs increased and became more complex. It's hard as family seeing it happen amidst hospital admissions which then result in a move of care facility.
Your grandma should have a social worker even if only the file has been kept open for four years, if she is being funded then there must be this involvement somewhere. The hospital social worker will be able to liaise and get things moving, so speak to the ward staff about when they're around so you/your mum/whoever is next of kin can have a conversation. The DOLS should mean that discharge to anywhere except a care facility is automatically ruled out, but I'd check and make sure.
Also, kindly, if your gran is starting to refuse to eat and drink, other than the swallowing issues, she may have decided that she's had enough and be giving up. Both our family members eventually got to this stage. It's worth having a family conversation about whether your gran - not you and remaining family - would want feeding and fluid intervention which hospital may well look at doing. Having a dignified end of life care plan in place is important. We shouldn't be keeping our relatives alive at all costs.

The care home is well within it rights to say they can no longer support her needs. You need to go back to social care and find out what next steps are - all hospitals will have a discharge co-ordinator often linked into a social worker who can also start the ball rolling. I imagine she will need to be reassessed for funding especially if her care needs have increased.

District Nursing will not have time ‘to keep an eye on her’ its not in their job remit. When was she sectioned? was it recently?

Hello,
My lovely Dad ended up needing nursing home care as he had Alzheimer’s. I am also a mental health practitioner. Firstly, it’s understandable how distressed you are, Dementia is such a devastating illness. You clearly just want the best for your DGM.
As she’s in hospital the in house discharge team will be looking at your DGM’s needs- they will mainly be social workers and will have returned to work yesterday.
If your DGM was detained under section 3 she will be entitled to 117 aftercare. Essentially this is funding to try to prevent future hospital admissions. 117 is not means tested and is not subject to the local authority funding cap (although they very much may tell you it is, they are wrong and legally 117 cannot be capped it is there to meet the need).
The local authority and the “council” are the same thing, just gets used interchangeably. If a person does not have the means to pay for their own care then it will be funded via the local authority AND/OR health (NHS) depending on need. People with Dementia tend to be funded by both to meet their range of needs.

If I was you I’d make contact with the hospital discharge team and ask to speak to who has been allocated to your DGM. Ask if she will be having a Care Needs assessment and if so, when, if not, why? Ask about the 117 situation also.
Finally I’d start looking at specialist Dementia care homes that are easy for family to visit. I 100% understand your fears around your DGM moving, but actually when my Dad moved to somewhere geared up only for his sorts of needs he was actually much more calm and content. There was more space, he could wander and it was safe to let him, there were more staff so his dietary and hygiene needs were kept on top of, as well as time for staff to chat with him, listen to music with him etc. My Dad was v young to have dementia, and it was a very sad time for us all, but the home made it the best it could be, so try not to despair.

Ok, you don’t seem to understand how it works. In a care home a care plan is in place. It’s reviewed regularly. IF your grandmother needed prompting for personal care then people wouldn’t be necessarily checking her skin or pads.

We don’t invade people’s personal space unless invited to. It’s about dignity and respect. Until someone tells us they’re in pain or discomfort and gives us permission to look then our hands are tied.

Equally, if we KNOW she has high grade urine burns but refuses to let us help we still can’t do anything. We’re not allowed. All we can do is raise concerns with the appropriate health care professionals. The District Nurse cannot and will not compel us to do something a resident refuses.

Unfortunately the elderly do deteriorate very quickly when unwell, it is often shocking for families, It is difficult to be watching someone go through these challenges x

This shouldn't be all on the families shoulders. There should be a team in the hospital who's job it is to find a suitable place.
So stressful.

This happened to us. The hospital flagged safeguarding issues and then the home refused to take her back.

your relative does need nursing home rather than care home. My relative flourished at the new home and also they could sort her diet and physio out. She needed puréed food for swallowing too.

as the homes are run as businesses they can refuse people. Ours almost seemed as punishment for the safeguarding issue. Homes are social care so under local councils so contact their safeguarding team and get all the complaints going on.cancelling the ambulance and all that is very off. My relative went by ambulance and they had a local gp which saw all the home residents. They actually called the ambulance. I’d write all that in the complaint. Ambulances are for emergency care, what if her blood pressure tanked en route due to nil by mouth ? Paramedics can sort that. Not you in a car. This home is a danger to others. Patients die from being dehydrated for days and on certain meds. The home should not have waited so long.

your relative needs an updated care plan from hospital to advise what level of nursing/adjustments she needs eg soft food etc. then they can help find somewhere. you need that assessment to help find the right place. You can visit them too. Ring your local council for advice on this.

@fkthesystem your gm appears to need nursing care as opposed to just care now according to her previous care home. a nursing home will always have a registered nurse on duty. the social work department will work on her discharge care plan and find another home more suited to her needs. leave it in their hands, in the meantime just visit your gm in hospital. they wont try to send her home. i would advise also not to take her into your home or your mothers home!!

I'm sorry you've found yourself in this situation. My mother in law was in a very similar position recently and ended up in hospital for seven weeks, with the most dreadful standard of care. She has advanced dementia and had been in extra care housing for three years, where the standard of care had been excellent, but she had become increasingly aggressive and the manager arranged for the social worker to carry out an assessment with a view to looking for a residential care home placement. My mother in law had a fall in late October and was taken to hospital where she was initially expected to stay in for a couple of days but the manager of the extra care housing development used this as an opportunity to say that they could not have her back. It took seven weeks before a suitable placement could be found. This was partly because her social worker had assessed her as needing residential care in the summer and refused to take into account that she had deteriorated hugely since her assessment had been carried out, and also because the offers of accommodation made by the local authority were really dire. The hospital discharge team were also very unhelpful and were pushing to discharge her to a totally unacceptable home because she was occupying an acute bed. After contacting everyone we could think of at the local authority and hospital, we finally got agreement that she needed nursing care, rather than residential care, rand the options then seemed to improve. She moved into an acceptable nursing home just before xmas after seven weeks.

We had been visiting my mother in law at about 3pm each day while she was in hospital but when I visited later than usual one day, at meal time, it became clear that she was not being helped to eat, and we then realised how much weight she had lost in hospital. A reluctance to eat had been one of the first signs of her dementia and had been a battle for five years. But rather than encouraging her to eat her meals, the food had been just left on her tray and then taken away uneaten. When we questioned the nursing staff they just said she wouldn't eat, and they had accepted this and not tried to feed her - this came to light after she had been on the ward for three weeks. The nurse on duty on the day I realised this was amazed to see me feeding her, and that she was eating, and we were shocked to realise that they had let her waste away for all that time without food. After that, we took her in bacon sandwiches every day, which are her favourites, and which she would eat with a lot of encouragement. Several times, we found her 'lunch' which had been left on her tray consisting of an unopened egg mayonnaise sandwich, which had been sitting in a boiling hot ward for several hours. I know she is very difficult and can be quite aggressive, but this was a dementia ward where the staff should have been used to older people with problems like this.

I fear you may have a battle ahead with the hospital and social care, but be persistent and don't be pushed into accepting an unsuitable placement.

Hi, haven't read all replies but I'm a mental health social worker.
The hospital should refer to adult social care, there should be hospital social workers to assist with discharge planning/finding appropriate care. In some areas they have discharge to assess beds to move people from acute hospital wards but they aren't always appropriate depending on a person's individual needs. If they haven't made the referral I'd ask them to do it today, and you can always call adult social care yourself to make sure the referral is made.

If she was detained under S3 of the mental health act and is eligible for s117 aftercare it continues as long as the care is needed, to meet the needs for which the person was sectioned, so in this case would be for dementia care. The local authority can request funding splits from the local ICB (previously CCG) if necessary. You can ask the ward to complete a CHC checklist to identify nursing needs but in our area if the person is eligible for s117 there's a different process.
Worth bearing in mind s117 aftercare only covers care costs, some homes have additional top ups and local authority would only pay these if no alternative placement can be found.

Another thought - has a discharge coordinator from the hospital been in touch? You can speak to them to action your requests. The hospital won't discharge until an appropriate placement is found.

Is the current care home an EMI/dementia care home or just general residential home? As care homes are private they can unfortunately decide, for sometimes reasons that don't appear clear, that they can't accept people back, but ultimately they have to decide if they can safely meet the person's needs.

I know it's an awful situation to be in but there is help available. You can also speak to the carers support in your area for advice/guidance, or something like AGE UK.

Sorry for the long reply, hope you manage to get the right care sorted.

(Edited as missed some info)

Agreed! DOLs should be for the shortest time possible and reviewed frequently!

The hospital ward will refer to SW to look at NH or EMI bed liaise with the nurse in charge

My grandparent is currently in basically the exact same situation and is basically bed blocking at this point. Nursing home won’t have her back because they ‘can’t manage her diabetes’ but also refuse to give notice so are getting paid despite her being in hospital. They have said my Grandparent can leave if we pay one months notice (£6,000).

She was moved there one week before after being taken out of her previous one for safeguarding reasons. It’s been reported to the care commission and working with the social worker to negotiate the notice period because otherwise we’ll be paying two homes at once! Advise to keep very thorough records and inform them you’ll recording all conversations.

While she is in hospital the staff will assess her care needs, mental state and capacity. She will be allocated a discharge Co ordinator and a social worker. If she lacks capacity and as there is no lpa they should arrange a best interests meeting which your mum may be invited to if appropriate and she wants to attend, I would leave it till then, the staff may come up with a list of suitable carehomes which you can visit first. The s117 won't be a problem. I would ring the home and arrange a day to collect her belongings then store them if you can, she will need toiletries, nightwear, slippers, dressing gown. I wouldn't take clothes in, if she remains on a dols they won't want her leaving.