Mum deteriorated in hospital-part 2

Unfortunately, self-funders in residential care have always paid a premium over those funded by the local authority. LA residents in my mum’s care home paid c£650.00 pw - my mum (self-funding) paid closer to £950.00 pw. This “anomaly” was recognised in Laing & Buisson’s report into care, which stated that the majority of self-funders would be paying around a 30-40% premium.

I never begrudged all the money my mum spent on her care, followed by a LA deferment agreement when the cash ran out - but I did begrudge that 40% premium, where she was not only paying her own fees but subsidising the LA’s shortfall!

There was a notice in the Nurses Station at mum’s nursing home, where she was self funded.
Self funded had…fresh towels every day. That was the only extra they had for being self funded and subsidising the others!

Thank you for your replies

I think the problem I have myself is that we never wanted mum in any home other than her own these were her wishes. Now because of accident in A&E we have no choice but too. We have taken care of mum for 5 years now even at her lowest was well cared for. Now she has to go into a nursing home not for medical reasons as such as no treatment is being given medically, but because of her complex needs, which she always has had because of her dementia. A home I might say is not our choice, it’s awful.
I just don’t get the whole financial thing, only recently found out that I or my sister are responsible for paying the top fee, which because I will not except paying this because I gave my business of 24 years up to look after mum have no income to be able to pay these, I have requested a call from social care to discuss financial matters such as this and even though chc has asked them twice to contact me still nothing 10 days later. So because I cannot pay top up, she is now stuck in hospital again even though there is bed waiting for her.
I guess what’s another couple of weeks after such a long time in hospital, let’s just hope the bed doesn’t get filled, I just don’t understand the mentality of the whole process, this just goes to show it’s all about budgets not the care of the patients

Demanding top ups is UNLAWFUL!

Anyhow, why won’t they give her CHC, which is totally free?

It’s so frustrating for you. I hope you can get it sorted soon.
Have you considered contacting your local councillor?
Emailing Citizens Advice is free and confidential, it is worth giving that a go for any further advice, it could take a few days but worth asking.

Well guys I would like to thank you all for your replies

But now is the time to through the towel in for me, I give up the fight for mum they have won.

Found out today that after 4 consultants at the hospital the district nurse manager and mums gp all putting mum at end of life, slow decline. I was informed today by chc and ss, not a doctor I might add that mum has had a rapid recovery and no longer dying, no longer needs one to one 24/7 care even though chc sent support plan out last week saying she did.
So that’s nice of the doctors to tell everyone that don’t matter that mum is no longer dying but don’t bother to tell the family. Honestly I know what your thinking how can this be correct I must be wrong. Trust my friends I’m not .
I do however, wonder if this has been put on mums medical records which I have now requested, just to make it more possible for her to be placed in a home as no home out of two boroughs would take her apart from one. I actually feel physically sick.


Sharon, I sense your exasperation.
I hope you can now manage to get your mum in a suitable placement.

So after almost 5 months in hospital with a short break when mum was allowed to come home to her house, two weeks ago I finally let them send mum to a nursing home for the process of access to discharge.
Two weeks in and I’m already wanting to bring mum home back to our house this time so we can provide 24 hour care as due to her accident in A&E this is what the doctor has said is needed.
The home is just awful, mum isolated in a room bed bound, no socialising just left on her own other than when the carers go in to change her pads and try and feed her, she gets visit of family regularly but this is only for short period of time as mum falls to sleep and because of her dementia talks in riddles which is lovely to hear her talking but a Shane person can only listen to it for so long.

I am awaiting the review meeting regarding the full assessment of care that mum requires, but already have had an indication that a majority will be social care which is exactly what myself and sister have doing for the last few years. I really cannot see what nursing care mum needs other than perhaps dealing with bed sores. Her medication has always been given by us anyway. They talk about her complex needs, but this does not seem to matter too much when they talk about funding and such like.
I will fight to get mum home where she can have some kind of life, surrounded by her loving family.
They let mum come home two months ago from hospital with only the district nurse in place and at that stage mum was at end of life with a slow decline, we provided all social needs at that time, so they have now decided she is no longer at end of life and her needs are not that complex to require any kind of funding for nursing care, so why is she in there, if she is a lot better now than two months when she was allowed home back to her house. All this is because the doctor said she required 24 hour care because of her accident in A&E. I am waiting on a report as a full investigation is being carried out regarding the accident, but in my opinion if the accident is clearly the cause of mum having to go into a home why should the nhs not be responsible for funding her fully.
She has ended up in a nursing home that is far below what you would expect for paying £1100 per week mum does not even get two pillows or bedding she gets one blanket thrown over her that is would most likely let my dog sleep on, no cotton sheets over her. I visited today on my arrival the carers where in mums from changing her so I waited for them to finish when I went into the room they had just left rubbish and an empty drinks bottle on the floor. My sister and I visited the other day and mum was sick everywhere, we asked the staff to change her and her bedding, which they changed her bedding and where leaving until we called them back as they had not even changed mums nightie which had sick all on it, it really does better believe, the carers also joked that mum was sick due to her breakfast (not funny at all) so these are reasons I want mum home I cannot bear to think of her being cared for in this way and it all seems the norm, it’s disgusting.

Hi everyone,

Without going into the history too much, because trust me it’s very long.
My mum ended up getting forced into a nursing home from hospital, then after a best interest meeting was allowed to come home and live with us. This was on the understanding that the local authorities would pay direct to family members to care for her as it was before she went into hospital. For me to be able to care for mum I needed to end my business after 25 years. Now because my mum has very complex needs, such as dementia stage 6, full heart block and terminal breast cancer it was always deemed it to be necessary for mum to be care for by myself as in the past she was not responsive to carers and it became unmanageable.
So it was all agreed for mum to come home with direct payment in place. Now after 8 weeks I have today been informed that my mothers home will need to be sold as it is classed as collateral. She does however, only own 50% as the other 50% has been put in trust as per my late fathers will. So because she has to live me she needs to pay for the direct payment from the sale of her home. The direct payment was set up because the carers could not meet her needs. If she was living in her house instead of ours she would pay nothing. Work that one out. The house has to be sold straight away no deferred payment as in a care home. I wouldn’t mind but no one has lasting power of attorney so noone at this stage can legally sell it until this is granted.
I have never heard of a person having to sell their home if they don’t live in it to pay for care

So sorry to read this Sharon. thousands of people have to sell their homes they don’t live in to pay for their care home fees but I am not sure they have to do so if they move in with family.

My Mum had to and by coincidence I was going through a big box of paperwork today and found the estate agents info, care home paid bills (amounting to approx £150,000) and letters I had written to my MP about the injustice of this.

After Mum died i read that the Govt were going to put a cap of £80,000 on the amount people would have to pay but it’s too late for us.

Make sure everything the council say to you is via email so you have a record.
Ask the council WHO they think is legally authorised to sell the house?
Who is going to empty it and prepare it for sale?!
Direct payments were agreed, and should continue.
Deferred payments are the logical solution.
Mum is very seriously unwell and you should be allowed to care for her in peace!

I’m not aware of any reason why the payment cannot be deferred. It’s all under exactly the same legislation. But as no one has the power to sell the house at present, they really have no choice but to defer.

One of the problems where I live is that the social workers are in one department, financial assessments are done in another department. All the social workers want to do is send someone else the work. Their own knowledge is virtually non existant.

They have no knowledge of Contract Law, I studied it at degree level. When one care agency didn’t do what they were contractually obliged to do, I witheld payment until they did what they said they would do. They never did, so I never paid them. Subsequently SSD told me off as “they are a small business and need the money” completely forgetting that I was running a small business myself.

Two of the area managers I’ve met were absolutely useless. In one instance I made a formal complaint of financial abuse, the area manager said she could find nothing wrong. I drove to M’s house, took the records to her office and showed her how th emoney “disappeared” every Sunday night. There was always a surplus Sunday night, but the balance next morning was zero. She was horrified, but did nothing. (She now holds a VERY senior post in SSD). Another time, there was a problem with M’s mileage, SSD were not paying for certain journeys. I explained to a different area manager that as all journeys were the same length and the same cost, all he had to do was count the number of journeys and multiply it by the cost of one journey. He refused, and sent the job to Winchester!

I suspect that the social workers are giving duff advice through ignorance.
Maybe look at the 2014 Care Act Regulations, which contain details of charging for care.
I know there is a clause that assessed needs must be met, even if the client refuses to pay. Under these circumstances, the LA can take the client to court. As no one has POA for mum, that would have no hope of success!!!

Ok, I’ve found the time to look up the rules and they state that deferral is available when someone is in a care home or a supported living environment.

They’re failing to recognise that by the best interests meeting agreeing that she should leave her leave her home and move in with you they have effectively made you her supported living environment and therefore can defer. Because she is in a residential placement that can meet her needs that cannot be met at home.

Got to be worth a go, especially as there’s no way to sort out the finances otherwise. It would almost certainly have to go a lot higher than your social worker though, but it’s what I’d be arguing in your position. Everybody wins.