How bad does a house need to be to be unsuitable?

[zogandtheflyingdoctors]

My mother is currently in hospital after pneumonia, and was previously quite independent and mobile. However, her house is awful - she's gradually withdrawn into using just one downstairs room, the roof leaks, and there's only one working tap and no shower/bath etc any more.

Hospital are talking about discharging her, but as there are steps between her bedroom and bathroom, and she currently can't walk to the bathroom in the hospital without assistance, I can't see how she will manage at home. I don't think it's fit for habitation anyway, but I don't know what other options there are - I don't have a spare room for her to move into and couldn't provide the level of care she currently needs anyway.

Where do I start? What options are there? Can the hospital just discharge her and leave it to us to pick up the pieces?

Even though mum is a home owner, she could still be eligible for rented accommodation that suits her physical needs, via local authority or housing association older persons or sheltered housing. Also look up Extra Care Housing with independent flats round a centre where care is available. A person who needs support can apply for housing in an area where a family member lives in order to get that support.

She wouldn't need to worry about maintaining her property, her family wouldn't need to worry about her living alone in unsuitable and run down housing, and she'd have the extra capital selling her house would bring, so rent wouldn't be a problem. Far cheaper in the long run than residential care homes. Too much emphasis is often put on staying in one's own home IMO. A suitable home is more important.

There may well be a hospital social worker who will be able to look at needs assessment along with physio / OT. There was when was when my mum was in hospital though we weren't told about this until we challenged unsafe discharge arrangements. Be prepared to stand your ground that her needs must be addressed before discharge - we learned the hard way that this does not always happen. Had an appalling experience when our mum was discharged home in a taxi late one evening without our knowledge (despite visiting daily) so heating not back on, no food shopping done, no care package back in place. She had been very poorly for several weeks and ended up back in hospital less than 48 hours later. She has had a number of further admissions and we make sure she never has house keys with her on the ward so that she can't be discharged without our involvement / agreement.

I'll tell you my story in case it helps at all.My experience is England, so may be different.

Hospital discharge team wanted to discharge as there was "nothing medically wrong". They were working on the belief that he was imply an elderly man with little mobility and considerable mental confusion.

They planned (but hadn't told us) to discharge into a CIC ("kick") bed - in the community - for re-ablement.

At that point, the consultant read my note explaining that Dad's current condition was a sudden and considerable decline on his normal state, so they decided to run a few more tests on him, and that delayed things for a week or so. But still found nothing wrong.

At that point the discharge team decide to engage with me. They claimed hospital physio had checked that he could get up out of a chair and off the toilet; that he had managed 9 steps; and that he could walk with a zimmer frame, and he was therefore "too well" for a CIC bed. They were willing to do a reablement package at home for 6 weeks (this would be free but should they at any point decide he had long term care needs, everything would become chargeable from that point). They planned to discharge that day or the day after.

I was happy about the reablement (and MN had advised me to push for that), but I wasn't happy about immediate discharge. I pointed out he had no downstairs toilet, they said "can you move his bed downstairs and we'll give him a commode and someone will come in to empty it twice a day?"

I pointed out his house was too crowded to do any bed moving quickly, and that seemed to do something (I suspect a light went on his head saying "hoarding" and "elderly squalor"). After a few minutes glaring at each other he sighed and said "OK,, how long do you want?"

He said he could either 1) arrange immediate discharge with a SS OT assessment or 2) do an OT assessment of the home while Dad was in hospital, which would in the nature of things delay discharge for a week or so; but with the warning that Dad might improve sufficiently for reablement to be not an option.

We went for option 1) for reasons that I won't bore you with, arranged for a stairlift to be fitted, and waited. It emerged that they wanted him to have a downstairs comfy armchair, but nobody was making any plans to get one (this gave us another week to sort things out). Once we found this out, we brought an armchair from his computer room upstairs and put it downstairs, and he was discharged next day.

He arrived home by private ambulance. 30 mins later the leader of the reablement team arrived followed in a few minutes by the district nurses team OT. So - bedlam!

OT checked for trip hazards and electrical safety and put in an order for a second zimmer frame so he didn't have to carry one up and downstairs.

Reablement team arranged for 3 visits a day - morning, lunch time and evening. Starting that evening.

So: what I learned:

1. Be very firm and explicit in stating what can't be done
2. Their concern is purely physical safety not quality of life - they see nothing wrong in parking someone in a room with a commode for the rest of their life.
3. When things happen, they happen very quickly. "He's ready for discharge" means "he'll arrive on the doorstep in half an hour" ... and, amazingly, the community teams are geared up to respond equally quickly.
4. Because of 3) - don't let the house get too cold, make sure you always can deliver enough food to tide over till a proper shop, etc
5. as Suze says - keep hold of the house keys so you have some measure of control.

As far as finance is concerned - payment for social care depends first on savings (if your Mum has more than £23,000 in savings, not including the value of the house, she's self funding no matter how small her income) and secondly on income - she is means tested as to her contribution.

As soon as she's in permanent care, the value of her house is taken into account in calculating the amount of her savings.

A reablement package, if available, would seem to be a good idea for your mother - you say she was previously mobile but cannot at the moment manage steps.

Sorry this was so long!

I would also recommend asking if there is a Hospital social worker to speak to, because the SW and the OT are the ones that can point you towards any help needed.

Not sure about Wales, but my mum got 6 weeks of help at home after discharge in England a few years back. We ended up taking the stuff the OT had recommended home in the car ourselves with the patient!

I'm interested to know more about being able to rent social housing if you're a homeowner, I haven't found any company locally that allows this, our relative had to buy a warden flat privately. I'll have another look.

Different local authorities manage their allocations in a variety of ways. Housing associations also. Some will take applications from owner occupiers. Always worth having a look.

Thanks MereDint - reading other people's stories is helpful so not too long at all!

After a couple of weeks of complaining to PALS and ward in order to get my mother fucking fed (she'd lost ten pounds, thanks to them ignoring her telling them she felt too sick to eat, failing to consistently give anti-emetics when prescribed, etc), we're now at the stage of looking at discharge again.

And I'm getting conflicting advice from social services and hospital. SS told me respite care in neighbouring trust (close to us) would be fine. Hospital claim it is impossible and not allowed to transfer between trusts for any reason. Who is telling the truth?

Hospital tell me that my mother is capable of going to the toilet and getting in and out of bed without assistance. I know this is not true. How do I prove they are lying/"mistaken"?

I feel both sad and angry reading your latest post, so many echoes of my mum's situation a year ago, including the blatant exaggeration (lying) about her capabilities. I found challenging directly just met a brick wall. In the end used to make comments like "that's good, I can't wait to see how much better she is doing". (Which would have been true had she actually been improving). Then I would literally wait and when she needed the toilet and obviously could not get herself out of bed, I would call staff for assistance "mum seems to be having a bad day today and needs some help". Could then witness first hand that it took 2 staff to get her up and assist her to walk to the toilet at the end of her bay. Noted their names and thanked them for their assistance and kept a written record of my observations. I never assisted mum at this point, just encouraged, as their assessment was that she could do these things independently. I also asked to see the OT who had completed the assessment (this never happened) however she did end up staying in a few more days until she could actually manage to get out of bed and to the toilet. Regarding the conflicting advice from ward and social services about respite, provide the contact name/number to each and request they liaise directly , it's a thankless task trying to be the go between in these circumstances. There may be a discharge coordinator for the ward who may be helpful. Ask to see any written assessments. I would echo the positive comments about the Reablement services. Once my mum was actually ready to go home a member of the team came to see us both on the ward to discuss what their service could offer and we arranged to meet the following day about an hour after I took mum home. We had already reorganised things at mum's so she could effectively live downstairs until her mobility improvedl and she had a pendant alarm to the community warden. The OT with the team provided a different walking frame, a pressure cushion for her chair and suggested a lockable medicine cabinet. That visited 4 x a day initially and provided some of the best and most reliable care my mum ever received, both in terms of practical looking after and encouragement/motivation. Excellent communication too, received a brief text after every visit to let me know all was well and a phone call if anything needed discussing, such a contrast. I never wanted mum to stay in hospital any longer than absolutely necessary but I had found it increasingly hard to trust information I was given on many occasions, my heart would sink to receive a phone call from the ward saying my mum was ready for discharge when she had been completely bed bound for days, was not eating, was still catheterised or on oxygen etc. The Reablement team restored some of my faith in services for our elderly and also reassured me that I had done the right thing in refusing premature discharge. Stay strong.

Thanks Suze. Working myself up to phoning social services now.

Unfortunately my mother hasn't even the strength to walk to the toilet unassisted - she needs help to stand up, turn around, pull her knickers down, she can (tada!) then sit down on commode. She cannot wipe herself and it is a big struggle for her to remain standing for long enough for someone else to do it and help her get a pad in and pull her knickers up. After that she is exhausted and needs help for someone to lift her feet into bed.

This to me does not sound like someone who is safe to be left alone all day with 4 visits a day - 15 min care visit is not long enough for her to actually pee, it takes a good 20-25 minutes. Add to that the fact that she has become seriously dehydrated on the ward...

But they have now withdrawn physio in hospital as they claim she wasn't engaging, without actually discussing it with her or us.

And now she's delirious today due to not having drunk enough, but they STILL booked a discharge meeting even though her social worker hasn't been allocated.

We still have no idea (can't get through to Age Cymru, they have 2 weeks backlog in answering enquiries) what financial help we might or might not be able to get for her to go into respite care for a few weeks till she is ready and her house is ready.

Fees for private homes seem to be around 800 quid or so per week, but I don't know if paying for private respite means they won't offer physio.

I'm so sorry to hear all of this - I was in a very similar situation a few years ago and got a tonne of useful advice on here.

I'm not going to repeat anything that has been said before (other than that the hospital social workers are definitely a helpful port of call). But a few other things might work.

Firstly, take pictures of the house. If they have seen this, they can't argue that she will be safe. This was the dealbreaker in my mother's case and they then offered her 4 weeks of 'rehab' to give us time to make some arrangements.

have the hospital definitely told you that she has capacity? (in the sense of being able to understand what is going on and make decisions for herself). This usually falls to the social workers, so start asking this question very definitely and ask on what basis they are saying this.

It's really hard to get anything done with the house if your mother is the owner/occupier. I went all the way through the law and basically if she wants to live like that she can, and there isn't a whole lot that can be done. There is no way to get the council to mend anything, I'm afraid.

Does she have any savings, or just money in the house? Do either you or your siblings have any power of attorney?

Oh, and it's a really hard thing to do, but make the pictures as grim as you can. Needs must, etc.

I might grab her keys while in over this weekend to block any sneaky dump-the-granny tactics.

Pictures are a good idea - because she lives far enough away from us that she always visits us, we haven't seen it. I will go in and take some this weekend.

She does, on good days, have capacity - but can be bullied/coerced on bad days to agree to things she doesn't understand or remember later. I don't know what the implications might be of getting them to declare she doesn't.

The implications are more if she does - because then if she says that she wants to go back to her house, in whatever condition it is in, they have to let her.

What does she want to do?

She does, on good days, have capacity - but can be bullied/coerced on bad days to agree to things she doesn't understand or remember later. I don't know what the implications might be of getting them to declare she doesn't.

Rehab team manager propsed to withdraw carers and presented me with a form signed by my father saying he didn't need any support. I questioned him in front of her and established a) he felt he did need support and b) he thought he'd signed merely to say the rehab carer had visited. Support continued. It is worth challenging statements and signatures.

Just updating to say thank you for all of your advice. Thanks to a brill social worker, my mother is now in step down care temporarily (which the hospital physio & occupational therapists seemed sniffy about, fuck knows why, but as there was no way they could claim that a house with no hot water was suitable, they didn't object as they realised it was the only way to get her off their hands). We're in the process of getting stuff cleared up in house/applying for maintenance grants to get plumbing & heating sorted.

She's improved a huge amount, still wobbly and will probably need help at home when she goes back, but is generally able to get around slowly, take herself off to the toilet etc & generally look after herself. And her concentration has improved massively.

Very relieved to have her out of hospital at last - it was very helpful to know when to dig our heels in and refuse to let them push her out of the door. Longer term we want to try to get her to move a bit closer to us, but at least we have a bit of time to work that out now.

OP just saw this

not sure what step down care is but glad things are getting sorted.

It's basically in a care home on a temporary basis, but as it's intended to be an opportunity to rehab before going home it is still health care rather than social care so is not charged (6 weeks max, but gives her a chance to get stronger/less vulnerable).

It is in fact exactly what we kept asking OT for so that we could get her out of the ward asap but they kept telling us it was impossible (in a sneery condescending "you are the failures how can you be so stupid" sort of way - I'm not sure why they & discharge bod were such arses when others were generally professional and kind, but it made everything insanely stressful and ironically for them, slowed it all down.)

Glad to read your update, hope everything goes well wit h getting your mum home safely.