Care home scandal… please help if you can??

[Coco22]

This post is extremely difficult…. Our mother passed away in January. Mom was a self funder and over 8 years in care spent £300,000 + She was 99 years old when she passed. Putting her in care was the most difficult decision we ever made. She had dementia and we had a young family that couldn’t cope. We tried to get mom out of the care home in April 2021 as things had changed at home. The care home was reluctant to let go. We asked for care plans that took 3 months to reach us. When they did we were in shock that they didn’t reflex mom at all. She was a bag of bones being kept alive using supplements and sub cuts. Covid didn’t help the situation as when we wanted to visit we couldn’t and when we could things were staged. Complaints made to the home and CQC ,! Social for safe guarding with no real outcome…. Left our family totally broken
We finally got mom home in Jan 2022 and she passed away 9 days later. Not the months to a year the care home stated in their files . Is anyone else going through this. We have asked for moms care and medical notes but have been quoted £500 to get copies…
When she arrived home we had the gp and district nurses examine her. The district nurse fast tracked her for CHC and was in shock that she was not already receiving this in the care home. Unfortunately mom never got the help she rightfully deserved that a system she paid into and then lost her home too. We’re left broken and angry that there’s no help for people that have no liberty and when family try to help we get treated the same. There are no best interests here other then care homes trying to keep their income. Moms best interests were never considered….

 

[nita]

Hallo @Coco22 - I don't have any experience of this as my mother did get CHC appropriately. I searched online for retrospective CHC claim and this came up:-

Retrospective reviews of NHS CHC eligibility If you think you should have been considered for NHS CHC but were not, you can raise this with social services, your care home manager or CCG Continuing Healthcare manager. If seeking a review in respect of a deceased relative, the CCG may require evidence to prove you are entitled to any money that may be forthcoming. They could ask to see the Grant of Probate or Letters of Administration.

 

[DreamsAreReal]

Sorry @Coco22 I don’t have any experience of care homes, but just wanted to say how sorry I am at the way you and your dear Mum have been treated. Absolutely horrifying, I hope you can find some way to get justice for your family. I don’t understand why the CQC aren’t being helpful?

 

[canary]

I am so sorry for your loss @Coco22 , please accept my condolences

I have read your post a couple of times and you are obviously very upset, but Im sorry to say I am not entirely sure exactly what is upsetting you. Is it that your mum did not receive CHC, or her condition when you saw her near the end, or something else?

If its the CHC, then you can get that awarded retrospectively as @nita has outlined.
If its something else, then please explain, but Im thinking that its the your mums condition that has upset you, so I would like to explain what happens at the end with dementia.

Dementia is a progressive, terminal disease and Im afraid that what you have described is the way that people die from dementia. It is not nice - in fact it is traumatic and harrowing, especially if you are not expecting it. When someone with dementia dies, it happens slowly, over weeks and months, as their body shuts down. Their appetite wanes because their body is starting to have trouble processing it and eventually they stop eating and drinking completely. Consequently their weight drops considerably and they do indeed look like a bag of bones. My mum looked like a skeleton at the end and I simply did not know how she was still alive. Their mobility also declines and they will eventually become bed bound. Unfortunately there is no knowing how long this last stage will go on for - it may only last a week or two, or it may go on for months - I remember one member saying that her mum had been at this stage for two years! It is notoriously difficult to predict. Many people come on here asking how long this stage will last, because no one will tell them and the answer is that no-one knows. During this stage doctors will often prescribe fortified drinks and things like milk-shakes to try and just get calories into them. Ultimately, though, there is no preventing it and they will die. It still takes several days for them to pass away, though, (in mums case it took 17 days) and the physical changes are harrowing. It must have been awful for you. I do hope the District Nurses managed to allow her passing to be pain free and comfortable.

(((((((((((((((((((hugs))))))))))))))))))

 

[Jessbow]

Sorry for the loss of your mum, Very difficult

Something I find quite confusing abut your post

The district nurse fast tracked her for CHC and was in shock that she was not already receiving this in the care home
Had you ever applied for it? It wouldnt have have changed much other than how her bill was paid.

Given that your Mum was 99 and frail, I do think it is unrealistic to expect anyone to be able to project her life expectancy.

 

[Spamar]

My husband, with mixed dementia, was given hours/ days to live. He died 15 hours later. Very peacefully, I may add. But his daughter and myself spent the time with him and chatted about things that had happened. He raised a smile several times, so understanding, as well as hearing, was still there. We were, and still are, 8 years later, both so thankful for this peaceful ending of life.

 

[nita]

When they did we were in shock that they didn’t reflex mom at all. She was a bag of bones being kept alive using supplements and sub cuts. Covid didn’t help the situation as when we wanted to visit we couldn’t and when we could things were staged. Complaints made to the home and CQC ,! Social for safe guarding with no real outcome…. Left our family totally broken

I am unsure what you mean by the above. It sounds as if you were unhappy with the treatment given by the care home. In that case it would mean a complaint made to the CQC which you say you have already done. I think if you pursued the CHC claim retrospectively, this would be looked into as well, e.g. why the home didn't apply for CHC funding earlier. Her medical notes would be obtained by the CQC.

 

[MartinWL]

I am not sure that a care home has a responsibility to apply for CHC. This is the responsibility of the person needing care, who is usually represented by an Attorney. If the care home didn't give the care expected that's another issue.

 

[Palerider]

This post is extremely difficult…. Our mother passed away in January. Mom was a self funder and over 8 years in care spent £300,000 + She was 99 years old when she passed. Putting her in care was the most difficult decision we ever made. She had dementia and we had a young family that couldn’t cope. We tried to get mom out of the care home in April 2021 as things had changed at home. The care home was reluctant to let go. We asked for care plans that took 3 months to reach us. When they did we were in shock that they didn’t reflex mom at all. She was a bag of bones being kept alive using supplements and sub cuts. Covid didn’t help the situation as when we wanted to visit we couldn’t and when we could things were staged. Complaints made to the home and CQC ,! Social for safe guarding with no real outcome…. Left our family totally broken
We finally got mom home in Jan 2022 and she passed away 9 days later. Not the months to a year the care home stated in their files . Is anyone else going through this. We have asked for moms care and medical notes but have been quoted £500 to get copies…
When she arrived home we had the gp and district nurses examine her. The district nurse fast tracked her for CHC and was in shock that she was not already receiving this in the care home. Unfortunately mom never got the help she rightfully deserved that a system she paid into and then lost her home too. We’re left broken and angry that there’s no help for people that have no liberty and when family try to help we get treated the same. There are no best interests here other then care homes trying to keep their income. Moms best interests were never considered….

I think there are a number of layers in your writing @Coco22 each with different aspects to how you feel about the whole experience that your mum went through and yourselves.

I don't think there are many people on this forum that can say they are 100% satisfied with any of the dementia journey and many of us feel an immense sense of guilt over the decisons we make and often have to accept less than we would provide ourselves as carers to someone we love very much. I am not saying that is right, its just how the system works at the moment.

I am not sure about the care home being legally correct in charging to see your mums notes, I do know that some type of consent or permission has to be gained if your not an LPA, but actual provision of the notes should only incur a reasonable admin fee for reproducing them -perhaps a Trading Standards matter as this is a private care home I take? As your mum has now passed, I am not sure that consent would be required at all but worth checking out. If you wish to really have some insight into what you feel might of happened then your mums notes are crucial to gain that insight.

I am aware that care homes can make application for CHC funding, and this was done on my mums behalf by the care home, even though I could have done it myself, they managed that for mum which took a lot of stress off me at the time and the application was successful for 12 months at least, but is now under appeal as it was withdrawn without appropriate assessment at the start of the new financial year (alarm bells ring).

I am sorry you feel so let down, but looking at how things unfold with the disease it becomes harder to manage especially when the drive to eat is lost and frailty of old age becomes a loosing battle. Somettimes the situation is complicated and the only way to find out is to ask questions and seek answers -so in that it might be worth pressing again to see your mums notes.

Perhaps what you could do as well as find answers is to join in with national campaigns and take your experiences to make the world a better place for people with dementia -because there are a lot of deaf ears out there, trust me.

 

[sarby]

I've got a story with some similarities. My Mum fell ill last November and was seen by her GP, who gave her days to live. Over the next 9 weeks she hardly ate or drank anything and often seemed to be comatose. Yet sometimes she perked up and could be quite chatty. We would get our hopes up only to see her relapse the next day.
In mid January another GP saw her and again gave her days to live. He did a Fast Track referral, which came through the day after she died. I asked why the first doctor hadn't applied for funding but was told it was a matter of clinical judgement. Getting 3 days CHC funding felt like an insult, so I decided to apply retrospectively too.
So far the care home have been a bit obstructive about handing over her records. Example: "I would like Mum's Care Plan, Daily Reports, Skin charts, Positioning charts and Medication logs, please." Answer from the Registered Manager: "I will have to speak to my boss. What records do you require?"
I have asked the local CCG what evidence they expect me to provide, given that Mum's records will amount to 100s of pages. I will be surprised if I get a reply before the 20 day deadline for submitting the application runs out, so will probably send them a very large parcel of photocopied records, should the care home come up with them. Hey ho!

 

[Coco22]

I am so sorry for your loss @Coco22 , please accept my condolences

I have read your post a couple of times and you are obviously very upset, but Im sorry to say I am not entirely sure exactly what is upsetting you. Is it that your mum did not receive CHC, or her condition when you saw her near the end, or something else?

If its the CHC, then you can get that awarded retrospectively as @nita has outlined.
If its something else, then please explain, but Im thinking that its the your mums condition that has upset you, so I would like to explain what happens at the end with dementia.

Dementia is a progressive, terminal disease and Im afraid that what you have described is the way that people die from dementia. It is not nice - in fact it is traumatic and harrowing, especially if you are not expecting it. When someone with dementia dies, it happens slowly, over weeks and months, as their body shuts down. Their appetite wanes because their body is starting to have trouble processing it and eventually they stop eating and drinking completely. Consequently their weight drops considerably and they do indeed look like a bag of bones. My mum looked like a skeleton at the end and I simply did not know how she was still alive. Their mobility also declines and they will eventually become bed bound. Unfortunately there is no knowing how long this last stage will go on for - it may only last a week or two, or it may go on for months - I remember one member saying that her mum had been at this stage for two years! It is notoriously difficult to predict. Many people come on here asking how long this stage will last, because no one will tell them and the answer is that no-one knows. During this stage doctors will often prescribe fortified drinks and things like milk-shakes to try and just get calories into them. Ultimately, though, there is no preventing it and they will die. It still takes several days for them to pass away, though, (in mums case it took 17 days) and the physical changes are harrowing. It must have been awful for you. I do hope the District Nurses managed to allow her passing to be pain free and comfortable.

(((((((((((((((((((hugs))))))))))))))))))

Thank you for your reply , It is true we’re upset We are totally aware of how dementia is awful and effects the family and our loved one that has to go through this process. What upsetting is….. we never applied for CHC. The care home did in April when after not seeing her for a year and a half we told them we wanted to bring her home. They told us we had to go through a multi disciplinary meeting before this was allowed. This was done on computer with no visits and everything the care home said we believed as we hadn’t seen mom for such a long time due to lock down. The manager said mom was walking. We had to believe. Our dementia nurse said moms feet were so distorted she hadn’t walked for a very long time. We always had total belief that mom was being looked after until we started to see bruises and open wounds and were never told of these occurring. When showing these pictures to outside medical bodies the stories the care home came up with never matched. We managed to get her home in the end, and she was comfortable which gave the family strength and peace My point here is not about the money. It’s not about the dying process. It’s about the care home lying about her condition to the family. I called many nights to be told she had ate and drank and was fine. To go in the next day and see that this was a lie. When questioning the care home they started to remove these files from moms daily file. They started to stop us from seeing mom even though she was EOL care. I had to call so many people just to see her. Which they all agreed with me and made calls to the home too.
I’m upset that I let her down. In a society which should look out for her, I feel this has not been the case. She didn’t have her mind but i still do…. What I’m basically saying is the care home has lied to us over the years. I have videos of new occupants been given their dinners, just to sit and stare at food without assistance. Mom could eat before lock down and after not. Chc told she can eat within 15 mins a joke and then we were told we could not visit during eating optimal experience.
I really appreciate your comments…. It means a lot to us

 

[Coco22]

I've got a story with some similarities. My Mum fell ill last November and was seen by her GP, who gave her days to live. Over the next 9 weeks she hardly ate or drank anything and often seemed to be comatose. Yet sometimes she perked up and could be quite chatty. We would get our hopes up only to see her relapse the next day.
In mid January another GP saw her and again gave her days to live. He did a Fast Track referral, which came through the day after she died. I asked why the first doctor hadn't applied for funding but was told it was a matter of clinical judgement. Getting 3 days CHC funding felt like an insult, so I decided to apply retrospectively too.
So far the care home have been a bit obstructive about handing over her records. Example: "I would like Mum's Care Plan, Daily Reports, Skin charts, Positioning charts and Medication logs, please." Answer from the Registered Manager: "I will have to speak to my boss. What records do you require?"
I have asked the local CCG what evidence they expect me to provide, given that Mum's records will amount to 100s of pages. I will be surprised if I get a reply before the 20 day deadline for submitting the application runs out, so will probably send them a very large parcel of photocopied records, should the care home come up with them. Hey ho!

I feel for you and am sorry for the passing of your mom. I’m debating about paying them £500 for records. I’m sure the ones that Matter will be missing. We trusted the home. Had no problems until covid and we didn’t see mom for a year and a half. Mom had changed and was so scared of everything. No touching! She loved her hair being combed but all that had changed ?. I understand dementia does this but after calling the care home one night and senior nurse shouted at me…. Well it made me think. I have my mind and how dare you.
I made things happen from that point to make sure mom was home. We phoned CQC about the fee and there no legislation on what care homes do with care records. They can charge what they want!!! Disgusting especially if you have a live complaint at the time of death…. It was never about CHC just wanted her home and safe. Our story is too long to put in text….

 

[Chaplin]

Hello @Coco22, I’m sorry for your loss and hope in time you can find some peace that your mum died surrounded by the love of her family.
Personally I think your feelings are still incredibly raw and will be for a long time. I can understand why you feel like you want to get some truth and justice for your mum, that is completely understandable, however, I think you need to take some time to grieve and regain some emotional strength. Unfortunately I’m sure any crucial records from the care home will be ‘missing’ and I’m not sure how much support you would obtain from CQC either.
COVID & the lack of family contact, has had a devastating effect on our loved ones in care homes, time which can never be recovered, it’s had a terrible impact on the mental well-being of those wanting to visit too, believe me, I speak from experience. My mum is in a home now where they tried to maintain meaningful contact throughout, but her previous residential home just took the hard line and kept families out for months at a time, resulting in my mum feeling all alone in the world. I felt like I let my mum down when we were not allowed to see her but it was all beyond my control as it was yours.
Take care of yourself

 

[sarsy2]

Hello @Coco22 , I have just read your post and felt compelled to reply. I realise it has been a few months since this thread was started, so I don’t know if you are still wanting suggestions but I had to message you anyway.

Firstly, I am ever so sorry to hear about your loss. The situation you went through with your mum’s care home sounds absolutely awful and I can completely understand why you are so devastated. Please don’t blame yourself though. From what you have said you and the rest of your family did everything in your power to ensure that your mother was receiving the best possible care. It is not your fault that you were consistently being provided with false / inaccurate information regarding your mum’s welfare from the care home. As soon as you did become aware, you acted in the very best interests of your mum to ensure she got the love and care she needed. There is nothing more you could have, or indeed should have been expected to, done.

In terms of raising a grievance with the care home I think you have a very strong case. I realise it’s been some time now since you posted so you may have taken other action by now. However, my suggestion would be in the first instance to a) request in writing (via email or letter) a copy of the Complaints Procedure from the Head Office for the care home in question. If the home is part of a chain (as most are) then I would go right to the top, and wouldn’t bother communicating with the care home staff themselves. b) Lodge a formal complaint in writing to the care home’s management company / care home itself if they are an independent concern (which is unlikely in these corporate times). They will, as part of their own complaints policy, have a deadline by which they must investigate and formally respond to your complaint. c) Once you receive their formal written response, if you remain unsatisfied (which, given the home’s past apparent attitude I suspect you will), then I would then refer your complaint to the Local Government and Social Care Ombudsman for further investigation .
Be aware there is a time limit on lodging complaints with them (12 months).

If your suspicions regarding the care home’s treatment of their residents is correct then this is negligence and needs to be addressed more widely too. This is where a complaint to the CQC might be appropriate. However the CQC do not investigate individual cases, so for that you need the Ombudsman.

With regards to the care home’s request for £500 for their care records (?), I would suggest that, unless you have already paid this, then I wouldn’t bother. The Ombudsman will request all records as part of their investigation, so let the care home try explaining their ridiculous fees to them.

I hope this helps @Coco22 . I’m no legal professional, but I’ve had to do a lot of complaining over recent years with regards to NHS and Local Authority care, so I’ve picked up knowledge along the way.

Once again, I am ever so sorry for your loss. I really hope you are able to find some peace in the knowledge that you gave your mum the best possible and most comfortable end to her life, and you always acted in what you believed were her best interests.

Take care x