Challenging council over care

NotSpaghetti, we looked at so many care homes before choosing one for FiL, and later for my mother, and I’d certainly agree that the most expensive is not necessarily the best, not at all. One we looked at for my mother had very smart, ‘Homes and Gardens’ decor in the public rooms, but the room they proposed to offer was down a maze of narrow corridors, and the actual room (it was a converted hotel) was very small, with the original avocado washbasin! Totally unsuitable, yet they were quite willing to take her - and that was one of most expensive ones.

Especially when there’s dementia, IMO ‘smart’ decor is there to impress relatives who are choosing - cosy and homely, with cheerful staff, is IMo much more important.

The worst home I encountered was a very expensive seafront one, where an old aunt of dh (frail but no dementia) put herself for a month while her helper was away. On paper it was very swish, but I visited her there twice - the staff were surly and miserable - the atmosphere was awful - the aunt absolutely hated it and couldn’t wait to go home.

My mother finally went to an Abbeyfield, purpose built for dementia, which was excellent - and again, by no means the most expensive. Many of the residents were not self-funded - maybe as many as half.

The home we found for my mother was purpose built and absolutely lovely but the staff were absolutely wonderful with her and with the other residents. It’s not true that because a home is physically lovely that the staff don’t care. They do, and they cared for us relatives too. We were always offered a cup of tea or coffee and something sweet to eat when they came round with drinks and snacks for the residents. They found time to chat with the residents and with their relatives. We were always kept fully informed about what was happening with mum. There was a full programme of activities, wonderful activities and I always encouraged mum to join in, but she rarely did. She was working towards the end of her life and didn’t have much enthusiasm for activities for those last months. She was treated with the utmost care and compassion always. The staff were wonderful. No ideology here either, mum preferred female carers for her personal care and this was totally respected. She was happy with male carers for other more general needs. We were lucky to find such a wonderful home where everyone, including visiting family, were treated with love and respect.

I have found that care homes, as opposed to nursing homes, where residents are able to participate in activities and some self care are generally better.

It’s when there are nursing needs, and/or people with fairly advanced dementia that care can deteriorate. It must be difficult to get well trained, or even enough staff to work in what to be fair, is a really difficult job. I appreciate not all nursing homes are the same, but my mother was not treated with compassionate care when she was a resident in a nursing home for a few months.

She was a “task” to be dealt with rather than a living human being. Often if 2 carers were dealing with her they interacted with each other, hardly speaking to her at all. She was immobile and spent all the time alone in her room, with necessary personal care carried out in a perfunctory manner.

My friend's mum had two staff members who sang songs from her childhood to her as they helped her dress/bathe etc. She told my friend regularly how nice it was to be "living with her best friends".

It was a pretty worn down place on a busy main road luckygirl - and needed more than a quick lick of paint!

I agree too about the smart homes not always being the best. When I was working in social care and had time to talk to the residents the happiest were in a home that looked scruffy on first impressions but they did art, baking, gardening - basically anything they asked to do and most importantly they had fun and were usually happy.
A couple of homes were super smart - one especially had the “wow” factor when you walked in- chandeliers, gorgeous soft leather armchairs in the reception area (most residents couldn’t get out of them but weren’t encouraged to sit there anyway) dining tables beautifully set with white table linen but it was all for show, to impress family and visitors.
The care was really bad and staff never stayed long, I would advise talking to the staff and other residents if you can to determine what’s the homes really like to live in.
If however you still really dislike the home the council will fund and you don’t want to pay a top up it is usually possible to look for one outside your area as long as it stays within budget.

This is true. When I was in social work, the best home as far as I was concerned was mega-scruffy, but homely. The lady who ran it was happy for a resident with dementia to take the garden to pieces, planting and replanting all the time because it made him happy; and I went in one day and everyone was eating fish and chips from paper on their laps - a resident had said she missed this, so off they all went in the mini-van and came back with their lunch!

Homes like this are precious. Needless to say the CQC closed it down. Sigh.

Caring staff are needed, but they are facing a losing battle if they are in unsuitable surroundings.

I can't help with the OP but wish you well.


What I would add to the search for a suitable home is based on the recent experience of a dear friend whose mother was basically given no choice of home during the pandemic. My friend was distraught at not being able to find a nicer alternative to the one "allocated".

It was not as horrible as some described here but was still not really very nice and it was very old and tired with virtuallyno outside space... BUT the staff were diamonds and just so lovely. They were almost like family to her and the care, support, encouragement - and yes, joy - they brought to her last couple of years was better than anyone could have hoped for.

In the smarter private homes my friend visited (when allowed) she didn't see the same level of caring or rapport. When her mum died last month she said she was truly grateful that she hadn't had a choice as her mum was just so happy there.

Sometimes we overlook the most important thing (the people) in the hope of nicer surroundings or better facilities.

Hats off to all those kind, considerate hard working carers out there. I just wish they all had a lovely, fresh, easy environment to work in and that their residents were able to enjoy the facilities that make the last stage of a person's life more pleasant.

We really do need to fix this shameful mess.

Yes it is soul destroying Luckygirl.

dragonfly I didn’t expect the home to provide a television, but the one we found did. I expected the environment to be safe, to be pleasant, to provide for all her needs. We took her own walker and wheelchair to the home, along with other personal items, including photographs of the family, ornaments from her flat, gifts we had all given to her over the years, along with clothing and toiletries etc.
However given that many people in care homes are bed ridden, I don’t think it would be too much for them to provide a television in each bedroom. Had there not been one in my mother’s room, of course we would have taken one in, along with her fan for hot summer days, but there was already one in the room. A good care home should provide quality of life, not just care. I’m pleased you also found a lovely home for your parents.

Maddyone my parents were in a lovely home but I did not expect them to provide TVs. They brought their own with their reclining armchairs.

It is soul-destroying maddyone .... you and I found the means to walk away from these dreadful places, but some poor souls live out the end of their lives in them. It does not bear thinking about.

I don’t have the expertise that many posters have, but one thing I do know about is unsuitable environment for the care of elderly or infirm people. When we needed to look for a care home for my mother, we looked at some that were far from ideal for a very elderly lady, unable to walk without a walker, recovering from a broken shoulder, with heart failure and other health problems. We looked at one, my husband said he wouldn’t put a dog in it. The home was housed within several houses all joined together with bits of new work. It was basically an old building. The corridors were very narrow, she wouldn’t have been able to fit her walker between the walls in many places, let alone a wheelchair. There were steps and uneven joins in these corridors and so she would have been unsafe trying to negotiate them. There was no lift. There was only two stair lifts which would have required her to turn herself around at the top step in order to sit down on the chairlift, but there was nowhere for her walker to balance so she would have been very unsafe. Then off the chairlift, walk to the next stairs and repeat the whole thing. It was certainly not safe. There were no en-suite facilities and tiny rooms with metal, hospital beds, and little furniture. No televisions were provided and television was my mother’s lifeline when she was old, both at home and in care.
We did find a lovely home for her because she was able to self fund. There are some dreadful homes out there, God forbid I ever end up in one like that.

Lots of good advice here for you Marshy 36. I would also say if your Mother does go into this home then ask to see her Risk Assessment and that she is referred to the Falls Prevention Team or whatever they are called in your area. There are many technical things that can be used such as bed and door alarms to track movement and several new IT innovations to track movement. I wouldn't rely on CQC inspections they aren't often enough and very paper based.

Farzanah

I do agree with you Luckygirl and after many refusals my mother was only awarded CHC because it appeared she was dying earlier this year. She hasn’t yet died but hasn’t improved either and is still in receipt of it.

I’m sure many people do fit the criteria for CHC but are refused because the budget is tight, and it is soul destroying battling, causing stress to oneself and loved one. Appeals must provide plenty of business for legal firms. It’s not cheap either.

I take CQC ratings with a pinch of salt too, after viewing lots of places. It’s can be a minefield. Even the better places are struggling with shortage of staff now.

Indeed so.

The problem is that if the NHS paid up for CHC funding for everyone who qualifies, it would go bankrupt. The problem is that under the NHS Act, the government is obliged to pay for care that is based on a medical need, and they have devised a system for avoiding this: complicated criteria for establishing this primary medical need, keeping quiet about it and not having ward staff, GPs and district nurses tell people of their rights, and keeping medical professionals up to speed on their patients' rights.

I have a friend who is battling to get this for her father. The district nurse refused to fill in the form as she said she could not do it, and that the patient was not yet terminally ill - two mistakes there: she is qualified to do it, and you do not have to be terminally ill to get it. So .... off she trots to the GP, clutching the form that I had downloaded for her and she had printed off. It has been there for 10 days now, with the receptionists saying that the doctors have not had time to do this. All this time a massive debt is being run up to pay for the live-in carer and the 4 times a day carer visits on top of this because his needs are so great, and of course the live-in has to have time off. He so obviously qualifies, but my friend is meeting a brick wall. The local CHC, whom she phoned, agree that he blatantly qualifies but can do nothing without the form.

The whole system needs reforming, but no-one will look at it: the NHS fears letting the cat out of the bag and providing widespread information, because they would not be able to afford the deluge of applications; abolishing it would bring it all out into the open and cause uproar. We see ads telling us we might qualify for many different benefits - anyone ever seen one flagging up CHC funding?

In the meantime, there are legal firms making a mint on advice and appeals.

LOUISA1523

It will be cqc inspected...so deemed safe...if she needs nursing care have they done a CHC assessment? I did for this with my aunty and she got all her care free.

The care home, I work in hasn’t been actually CQC inspected for three years….(i.e. inspectors actually coming into the home, Obviously Covid played a part in that)

Sorry, I should have made it clearer, what I meant was funding responsibility, rather than responsibility to help find a placement. It’s the funding issue that causes dispute between Health and Social Care.

The council had accepted "responsibility" for my OH's care, but I was clear the responsibility lay with the NHS and pursued this successfully as my post above.

Yes.I am sorry about that LOUISA. It was a stupid thing of me to say.

People with dementia who have been held under the mental health act 1983 should get CHC under section 17 I think. It’s a struggle fir most people though.
I am sorry about your mum Louisa.

Farzanah

Just a word of experience about NHS CHC. It is notoriously difficult to get, and is dependent on assessment of advanced nursing needs. Your aunty was lucky LOUISA as is my mother who is in receipt of this. It is also reassessed every few months.

She wanst that lucky farzanah....she has advanced terminal cancer 🙄

I agree with what you are all saying, but in this case it’s unlikely because it appears from what marshy36 said in her original post that the Council have already accepted responsibility for funding her mum, which they wouldn’t do unless she had either already been assessed for CHC and didn’t meet the criteria, or it was clear she wouldn’t be eligible. As you rightly say, their budgets are extremely tight, and they don’t accept funding responsibility without confirming their eligibility criteria is met. This is one of the reasons for delays in discharge to care homes.

I do agree with you Luckygirl and after many refusals my mother was only awarded CHC because it appeared she was dying earlier this year. She hasn’t yet died but hasn’t improved either and is still in receipt of it.

I’m sure many people do fit the criteria for CHC but are refused because the budget is tight, and it is soul destroying battling, causing stress to oneself and loved one. Appeals must provide plenty of business for legal firms. It’s not cheap either.

I take CQC ratings with a pinch of salt too, after viewing lots of places. It’s can be a minefield. Even the better places are struggling with shortage of staff now.

Farzanah

Just a word of experience about NHS CHC. It is notoriously difficult to get, and is dependent on assessment of advanced nursing needs. Your aunty was lucky LOUISA as is my mother who is in receipt of this. It is also reassessed every few months.

I got this for my OH after he was refused at two assessments. I won an appeal where the panel agreed it straight away and could not believe he had been refused.

Just because they resist paying it and it is difficult to get, does not mean that people do not qualify. It is part of the game to avoid paying it. I had history and knowledge in the field and simply would not lie down under their ploys. Unfortunately there must be tend of thousands of people who qualify but who get fobbed off. Imagine being very elderly and trying to get the best care for your spouse ands being made to go through all that - most people just cave in, and who can blame them? It is enough to have a loved one in this sad situation without having to fight for proper care.

The nursing home that the council wanted to send my OH to made me sit and weep in my car on the car park after I saw it.

The room he was allocated was down a service lift - with those metal expanding grid doors - along a very narrow dark corridor with gloss painted brick walls, and tucked away at the end out of touch with anyone, virtually below ground, with a small high window with a fire escape running diagonally across it - cold lino floor and metal hospital bed. Needless to say this place was CQC inspected. Their threshold for deeming a home unfit is very low, as they have nowhere to send the residents if they shut it down. I know - on one very rare occasion this was done I, and a team of other social workers, had to fly in and find homes for 20 bewildered tearful residents - not something I wish to relive.

I went home from this grim place and put our house on the market. No way was he going there, after decades of serving the community as a GP. It was an insult to him, to us and to any poor soul who finished up in that room. My rage still surfaces 3 or more years later. [I eventually found him somewhere beautiful - carpeted single room, nursing bed disguised as a normal bed, French doors onto lovely patio and garden, fully adapted en suite, carpeted wide corridors with small sitting rooms set up like home, a library, a bar, a spacious coffee area ......]

To the OP I would say think of 2 things:

Your Mum might qualify for full funding under the NHS Continuing Health Care Funding rules - give these guys a ring: www.beaconchc.co.uk/ They are very busy, but their advice is free. Has your Mum had an assessment for this funding? If not ask for one. They will try and fob you off - I know this only too well; stand your ground. If your Mum's need for nursing care is due to a Primary Health Need, and she has physical and mental deficits then she qualifies. Insist on an assessment being done and make sure you are there and have taken advice beforehand. If you want to pm me, I can take you through this.

I have never heard of a council agreeing to pay the top up - frankly they don't have the money - unless there are specific items that you can list in detail as not being suitable for your Mum. Go round the home, write down the exact dangers you can see, talk about vulnerable adults, safeguarding etc. - hit them with the buzz words. Be specific.

Just a word of experience about NHS CHC. It is notoriously difficult to get, and is dependent on assessment of advanced nursing needs. Your aunty was lucky LOUISA as is my mother who is in receipt of this. It is also reassessed every few months.

It will be cqc inspected...so deemed safe...if she needs nursing care have they done a CHC assessment? I did for this with my aunty and she got all her care free.