I’m just wandering if anyone on here can give me some advice about rented housing with extra care waiting lists wait times. My 78 old uncle is living in my house and he’s house bound, the house is falling into disrepair and it stinks as he does his toilet business in the front room. He’s been on this list for 18 months now. I know nobody on here can give me an accurate timeline but in anyone’s experience on here how long can these wait times last ?
The property he’s on the waiting list for is with anchor housing, I believe they have properties nationwide, he’s only the waiting list for this one property I understand some people are on the waiting lists for 3 or 4 properties. What would you do contact the properties site manager about how far along he is on the waiting list? I don’t want to come across as pushy but if I phrase it that I’m just checking in for a an update I think that sounds out of place.
Any advice is greatly appreciated. Thanks
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@Toppman89 , hi there and welcome to the fourm. I am not sure what the wait times are on a waiting list but it can be a long time putting it in a nutshell. What I would suggest is that you make contact with his gp and tell them what the house is like and maybe they can do something. the only other thing is speak to soical services and tell them the situation and maybe they will do something. You could write to your MP or local conciliar . If you do get ignore you could go to the papers or go to the police and say you want to raise a safeguard and see what they say. I hope it helps. but it redtape we are all fighting
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Honestly it’s probably time he moved into residential care. Otherwise, if you give him official Notice to Quit it will put him near the top of any waiting list. I suspect he is currently regarded as being “adequately housed”. Does he have over £23,000 in savings? Above this amount he will be regarded as “self funding”. Is he claiming Attendance Allowance? Is he paying you for his room and board?
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@Toppman89 you could ring your local citizens advice bureau and have a chat with them.type citizens advice bureau into Google the area where you live and there number will come up .when you ring they will take some details and make you an appointment for someone to ring you back. Also you could ring the place he is waiting for he’s being waiting 18 months so that’s not being pushy .then at least you will know where you stand instead of wondering. Just ask them if they could please tell you what number he is on the list as you have been waiting months and just wondered . You also say some people have there name down at a few places and him just one. Are there any others he could have his name down to.whoever put his name down there can’t they look into other places to.
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Hi thanks for replying to me. He doesn’t have £23,000 or above in savings. My parents manage his finances and he’s got more like £12,000- £13,000. I’m not sure about attendance allowance, but he has carers coming in 4 times a day. He doesn’t pay me any rent for room and board.
I can’t live with him the house stinks of urine, like I say he does his business in the living room. The carers aren’t there long enough to cook him anything substantial and they wash him in the living room as well. He basically lives in 1/3 of a living room, he’s got a chair, hospital bed and commode and that’s his world he does very little outside of that space. A stairlift was put in that he never uses and he never goes out. He can’t clean the house or keep up to the garden or anything. Also is an official notice to quit some type of eviction notice? Whatever it is you reckon it could bump him up the list.
If he was in that living complex he’d have company, proper hot cooked meals, a proper toilet and shower, hair dressing facilities and there’s a bar with entertainment. He looked around it last November and liked what he saw. One of the emails from the complex’s manager said the waiting list is bigger than it’s been for many a year and it would be a while before they could offer him a place, that they would want his answer within two or three days of him Being offered a place and he would move in within a fortnight after he gave the go ahead. Does a while mean years ?
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Hi thanks for your reply. This all started about 5 years ago when he got these sores on his legs and puss started to come out of them. He became house bound and 2 years ago he was found on the floor completely naked and was admitted to hospital where he spent 3 months.
The hospital was not interested in discussing him going into residential care they just sent him back to the house, I got in touch with the local councillor who helped me get him a social worker who in turn got in touch with this assisted living complex that’s he’s on the waiting list for. Are all these people like the hospital, social services and the care home just satisfied they merely gets by ? And the manger of the assisted living complex said it would be a while before they could offer him a place. Does a while mean years ?
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Thanks for your reply. Yes I can do all that. I take it a space doesn’t become available in these places until someone either dies or moves to another assisted living complex or an out and out care home. So when the manager says they won’t be able to offer him a place there for a while does a while mean years then ?
Yes I’d like to know where he is on the list and why he’s only on the list for one property.
Thanks
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@Toppman89 i while will mean as long as it takes I would think because they do not know . Yes when someone passes away or moves out .then someone from the top of the list would move in and then he would move up the list. I would find out where he is on the list there is no harm in asking.it could be . Depends how long the list is .i would ring the citizens advice bureau make an appointment and talk to them about it. See what they can do ask them for there help. If this places is lovely like you describe it. That’s probably why it could be a while. Be careful with the notice as social services could say you have done it on purpose and your uncle could end up somewhere not nice .i don’t know it was just a thought I had. I would discuss that with CAB to. You could also see if there are any other assisted living places where you live that are nice and put his name there to. Ask your parents if he gets attendance allowance he should do. If he doesn’t type it into Google and gov.uk attendance allowance will come up ring the number and send for a pack. And if you need help to fill it in its best to have someone who knows what there doing who s used to them . Ring somewhere like citizens advice or age uk to help fill it in. Send his medical letters what they ask for and get his gp to do a letter for him to if he doesn’t get it. If you put the assisted living place into Google do they have a website does it say on it what the waiting list is. May not just a thought.x
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From what you describe it’s highly unlikely that he will be able to manage in the place you describe. If your parents are “managing his money” presumably they are his DWP Appointees? then they should be giving you the majority of his benefits every week to go towards the cost of his keep. Details of a recent judgement can be found on the Down’s Syndrome website, it covers all disabilities. Your parents should be claiming Attendance Allowance for him too, Why are they allowing you to be treated like this?! You deserve a life of your own and a home which is clean and tidy and smells fresh and clean. When did Social Services do a Carers Assessment for you? I’m dismayed at your situation? Dare I ask if your parents have a different culture? Having read your earlier post again, I read it initially that uncle is living with in your house with you, is that the case, or is he living alone in your house. If he has savings under £23,000 he could be placed in a care home by Social Services. He would be allowed about £30 a week but no longer receive his pension.
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@Toppman89 may I ask when your uncle was in hospital and he came home .how come he ended up in your living room and 1. Why not your mum and dads as he is their brother. 2 did you not say there is not room where I live and then it would have been social services priority to get him into this place or another nice place. If they are that desperate for the hospital bed and you had said no they would have had to find him a nice place that suited his needs they would have had no choice or he stayed in the hospital bed blocking it till they did.
Also another thought you say your living room smells of urine. Are the carers cleaning the commode properly with disinfectant /bleach / anti bacteria cleaner .something to clean it properly .as the smell of urine could be that it is not being cleaned properly each time after use .so after days /weeks of your uncle living there the smell would build up if it’s not being.
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Hi I have looked on their website and it does not say anywhere on there about how long the waiting list is. I’ll contact the complex and try and find out how long the waiting list is. The good thing about the place he’s currently on the waiting list for is that’s it’s on the doorstep but I’m sure there’s other places near by that are nice. I’m not wishing anything on the people in these places but if people can move into them from the age of 55 then some people living there are going to be reasonably young and hardly likely to die anytime soon. I’ll look into the attendance allowance as well.
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He’s there because I moved in with him years ago and the house was a council house that we applied to buy, we bought it out right. But since then his mental health has deteriorated and he’s become house bound. So when he left the hospital they sent him back to the house because they just wanted the bed free, but i couldn’t put up with living him any longer because of his mental health and the disability that’s caused the smell and the state of the house.
He’s my dad’s brother by the way who does things for him but his very loathe to do so as he’s so lazy. I don’t have a good relationship with my dad and have not spoken to him for 11 years. The carers go 4 times a day aren’t there for any prolonged period of time so don’t have the time to do much they empty the commode but anything else they’d say they aren’t cleaners. Surly it would be cheaper to have him in a complex like that has opposed to having carers coming out 4 times a day seven days a week.
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@Toppman89 yes I would ring and ask them , because like you have stated 55 + years. Some people may just need abit of help and so could be in there for years. Is it a big places with lots of flats. When you ask them what number he is on the list ask them if they have any idea how long that would be just a rough idea. You could say that you struggling abit so just wondered if he had moved up the list. They probably have a waiting list because they are good. So people are prepared to wait.Yes look into the attendance allowance
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@Toppman89 what times do the carers come ,4 x times a day . Is there time for them to do cleaning .carers will say that. They are suppose to do personal care first as that priority and time left after tidy up ,light cleaning duties. Read this type into google care act 2014. That’s the law for care in that look up home care .it will say there is two forms of care personal care and habitational care . For people with eligible needs . They are supposed to help with washing dressing meals , light cleaning duties. Empty the bins , put washing in washer , change the bed. Whatever you uncles needs are what he cannot do. When I came out of hospital I had some that would ,some that didn’t but they did hoover for me I asked them because I could not walk for 10 months. Do you work full time , or do you care for your uncle to. Write a list of the things that you want the carers to do and put it on the side and say to them that’s a list of the things that you want them to do.if they say they don’t do cleaning say to them well the care act says you do light cleaning duties after personal care for people with eligible needs and my uncle has eligible needs. When the carers are saying we don’t do any cleaning they are meaning they don’t want to . When he was in hospital before he came out he would have had a needs assessment and then a care plan would have been done. If you are saying he is now worse than when he came out of hospital then you need to ring social services and say my uncle is worse and needs another needs assessment. When I had the carers they did help with personal care ,did my meals ,they tidied up ,they hoovered. They changed my bed, they put my washing in the machine and washed it and dried it. One of them who was lovely would wipe all my kitchen sides and moped my kitchen floor. So are you saying all they are doing is emptying the commode anything else. If they are not doing a lot you need to ring the agency and tell them .
So if your dad and his brother don’t get on your in the middle of it all .
So could your uncle get any help with his mental health if he getting worse could the doctor get him some therapy or whatever he needs to help him.would that be any good for him.
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In plain language, it sounds as if your dad is ripping off your uncle, keeping his money, not giving you anything for his board and lodging! If Social Services are providing the care, part of the assessment involves the “ability to maintain a habitable home”. Clearly the carers are not doing this either!? They need to sort this out.
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My parents manage his money has he was made bankrupt a few years ago and like I say he’s not all there. He can’t leave the house so my dad does his shopping and pays the bills as they’re all direct debit. I don’t like my dad but I don’t think he’s ripping him off, my uncle is into model railway like hornby etc and still buys things like that so he does have money to spend.
I don’t understand either why my parents don’t want better for me either. I’m not living with him anymore it’s uninhabitable with him living there in the condition he’s in with the house in the state it’s in. He doesn’t have savings above £23,000, as when you say he could be put in a care home would that be different to the rented housing with extra care.
I don’t want to sound like I’m knocking my uncle but he’s got learning disabilities and has never really worked even though he could have done cleaning jobs or labouring jobs so he doesn’t receive the full state pension his income is mainly made up from benefits and obviously from what I’ve told you no he’s got no private pension either.
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Won’t they say they are not cleaners and don’t have time to clean it either. I gather there only there 15 minutes or so.
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Hi i forgot to answer your question as to when he was in hospital. He was found on the floor at the start of April 2024 and he was there until July 2024. Whilst he was there they have him physio on his legs, speech therapy, they put something in his drinks to help him swallow and injections to thin his blood, I guess they were concerned about blood clots as all he does is sit there, but I’m sure he doesn’t get them now and he’s still just sat there. He also had a growth removed from his head later that year.
It was after that when he came back to the house I got in touch with the local councillor who helped me get in touch with social services who referred him to the assisted living complex and he’s been on there waiting list since January 2025.
The assisted living complex’s website says it has 41 one and two bed retirement apartments. My dad and uncles uncle so my great uncle lived in the place next to door the complex my uncle is on the waiting list and he loved it whilst he was there. My uncle might even get to go outside again and maybe go on day trips as well instead of just rotting in 1/3 or of a living room. He’s currently living like a dog in a kennel. Yes I’ll after contact the complex and get in touch with the citizens advice bureau. I live in Leeds by the way and was asking the original question on here if people elsewhere more far afield in the uk or more local could share there experiences of these assisted living waiting lists.
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The carers come I believe around 8 am, 12pm, 4pm and 8pm, that’s there or there about’s. They only stay about 15 minutes and do the basics. When the assisted living manager came to the house for the meeting she couldn’t believe what they make him to eat but they are not there long enough to make him anything substantial. Before he went into hospital I believe the carers only came out twice a day and since the hospital it’s been 4 times a day. He’s probably got the maximum number of hours subsidised by the council for carers and like I say they are not there long enough to do much else.
I believe they make him drinks and something basic to eat, empty the commode, wash him does and help with his washing. He’d have a much better carry on in that complex. He has accessed mental health service in the past and they could only do so much. Like I’ve said he’s got learning disabilities and the mental health stems from when his father was alive he let his father go into some kind of hospital for rest bite for his mother and his father never came out so in his head he killed his father, so he imagines people he calls the police watch him and he’s got someone in him called Richard and he talks to him and chest busts like something from the film Alien, it’s like some kind of paranoia/psychosis.
It’s not that my dad and uncle don’t get on, it’s more my dad is a horrible person who doesn’t care about anything as long as it’s not putting him out. Don’t get me wrong he always went to work but since he finished work he’s become really lazy, also I think he sees his brother as a burden and was probably put out by all the attention and such his brother received from other family members as he’s not all there and probably resents his brother for never working as he had to, my dad was always jealous of the attention paid to me and my brother by my mum. I think he always feels pushed out so he gets jealous, I’m not psychiatrist that’s just my opinion on why my dad is like he is and why he has the relationships he has with members of his family.
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@Toppman89 the carers are there to do personal care and habitational care all the things that I’ve said above. You say they are only there about 15 minutes .how long are they supposed to be there. Do they not have time to do things because they are not doing the time they are allocated to do. You need to do two things one ring social services and ask them about your uncles care plan ask them how much care he has been allocated to each visit.. when I came out of hospital I had 1 hour morning ,30 mins each lunch and tea , 30 minutes evening some people get an hour depends how they are. See what his care plan says .if they have not given enough time on the care plan. You want a new needs assessment for your uncle because 1. He has got worse since coming out of hospital 2. He is worse and his needs have increased. 3. If they tell you the times he’s been allocated and you don’t think the carers are doing the time they should be you tell the council that and ask them to please sort it out.
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