CHC refused, should we appeal? Just how bad does Mum have to be?

Discussion in 'Middle - later stages of dementia' started by LeedsLass, Feb 20, 2015.

  1. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Will try and keep this brief but apologies if I fail.

    Mum (82) admitted hospital mid October with severe infection after Dad unable to wake her. Up until then mild dementia for last 3-4 years. Coping perfectly well at home, Dad doing all the household stuff. Became immobile and incontinent literally overnight. Memory and confusion also suffered big hit. Transferred to nursing home just before Christmas. SW put case before panel on 18 December, expecting Mum would be awarded CHC. (The same SW who asked for a meeting knowing I live 200 miles away and then didn't turn up as she was off sick but hadn't told anyone. Meanwhile I spend over £100 on train fare, 8 hours travelling and OH rearranged work meeting so could work from home. All week had tried to contact her to confirm grrrrr).

    Poor Dad (84) has been checking post and answerphone every day, has letter got lost in Christmas post? Panel on holiday? Tried contacting SW again, heard nothing until last Friday (almost 2 months) when she phoned to say decision had been deferred as panel needed more information and would go to panel again Wednesday. Mum is completely reliant on carers for absolutely every aspect of daily living. She has to be hoisted every time. Unable to sit up on her own let along stand. She has AMD, no interest in TV, radio, activities etc (she can't turn the TV on anyway and doesn't always know what it is). She is also not eating and has lost a considerable amount of weight. Soon she will be too frail to move out of bed. She is depressed, wants to go home, says she wants to die. She still knows who family and friends are and is passive with no challenging behaviour. SW's only comment was she's not in pain. Well if she was she would forget and probably couldn't articulate it. She grimaces every time she is hoisted, uncomfortable in wheelchair as so thin now. The only bright spot for her is the almost daily visit by Dad who refuses to leave her and stay with me for a break.
    So my question is, should I appeal? Dad obviously doesn't want the hassle. She has now been awarded the nursing element. It will be reviewed again in 3 months but seriously how much worse does it have to be?
    She is self funding, we don't have POA (she agreed to us doing it the week before she became ill so now going down COP route).
    Thank you for reading, any advice much appreciated.
     
  2. min88cat

    min88cat Registered User

    Apr 6, 2010
    581
    Hi LeedsLass,

    It's an absolute minefield isn't it- there are those on here who have appealed and won, and those who have appealed and lost. I dare say they will be along shortly to tell you their stories. My late Aunt suffered a massive stroke, couldn't feed herself, had to be turned regularly as she was paralysed, couldn't speak, and was dependant on the NH home staff for absolutely everything. heart problems , blood pressure problems you name it. She didn't get funding, we were told this was because she was compliant and non violent. We couldn't fight it as sadly my Uncle passed away 3 weeks later, closely followed by my Aunt.
    I think it's a post code lottery to be honest, some areas are better than others.

    I'm sure others will be along with better advice.
    Good luck.
     
  3. katek

    katek Registered User

    Jan 19, 2015
    191
    LeedsLass

    I really feel for you and your family, having been through the system for both my father and late sister.

    You quite naturally ask, as we did, "how bad does it have to be?" but in fact being bedbound, incontinent, totally dependent etc is in fact quite run of the mill as far as CHC is concerned. Basically, what scores highly is anything that has to be done by qualified nurses (as opposed to carers) e.g being on a drip for nutrition, or anything which constitutes a risk to self/others e.g. extreme behaviour so has to be managed by skilled staff. Min88cat's posting bears this out.

    Practically all people with advanced dementia would score 'severe' for cognition, but only those who score another 'severe' will comfortably secure CHC. In my father's case, his behaviour was considered severe and he receives CHC. Of course, I agree that he should, but at the same time think that those poor souls who happen to be compliant but are more physically incapacitated (my father is still mobile) are no less deserving. But CHC doesn't work like that. In fact, often, the more 'ill' (incapacitated) someone is, the easier they are to manage, and the less likely they are to qualify.

    My late sister had advanced MS with significant cognitive impairment - in fact she scored 'severe' for this, on a par with many Alzheimer's sufferers. She was also bedbound, doubly incontinent, unable to speak or swallow and was fed by PEG tube - none of which scored another 'severe' - just three 'highs' and three 'moderates'. In theory, this could qualify for CHC but is by no means automatic, and is more likely to be refused by the panel, who are basically looking to save money wherever possible. My sister, along with most applicants, was awarded £108 nursing care but not full CHC. We appealed, and even involved her MP but were not successful. As she was not self-funding we didn't take it any further, but would have if she had been self-funding. Also, I have since discovered - from an article posted on here in fact - that the NHS trust she was in is one of the worst in awarding CHC, so that is also a factor - the 'postcode lottery' aspect.

    I am not sure what to advise you. Do you agree with the domain scorings? If not, you will need concrete evidence to be able to push these up. Just from your description, it sounds unlikely that your mother would score two 'severes', but you would need to look carefully at the Decision Support Tool (you can download it). If you then feel that she meets the criteria, and have the time and energy to appeal, it might be worth it in order to feel you have done what you can for her. I wish you all the best if you do.
     
  4. katek

    katek Registered User

    Jan 19, 2015
    191
    LeedsLass

    I really feel for you and your family, having been through the system for both my father and late sister.

    You quite naturally ask, as we did, "how bad does it have to be?" but in fact being bedbound, incontinent, totally dependent etc is in fact quite run of the mill as far as CHC is concerned. Basically, what scores highly is anything that has to be done by qualified nurses (as opposed to carers) e.g being on a drip for nutrition, or anything which constitutes a risk to self/others e.g. extreme behaviour so has to be managed by skilled staff. Min88cat's posting bears this out.

    Practically all people with advanced dementia would score 'severe' for cognition, but only those who score another 'severe' will comfortably secure CHC. In my father's case, his behaviour was considered severe and he receives CHC. Of course, I agree that he should, but at the same time think that those poor souls who happen to be compliant but are more physically incapacitated (my father is still mobile) are no less deserving. But CHC doesn't work like that. In fact, often, the more 'ill' (incapacitated) someone is, the easier they are to manage, and the less likely they are to qualify.

    My late sister had advanced MS with significant cognitive impairment - in fact she scored 'severe' for this, on a par with many Alzheimer's sufferers. She was also bedbound, doubly incontinent, unable to speak or swallow and was fed by PEG tube - none of which scored another 'severe' - just three 'highs' and three 'moderates'. In theory, this could qualify for CHC but is by no means automatic, and is more likely to be refused by the panel, who are basically looking to save money wherever possible. My sister, along with most applicants, was awarded £108 nursing care but not full CHC. We appealed, and even involved her MP but were not successful. As she was not self-funding we didn't take it any further, but would have if she had been self-funding. Also, I have since discovered - from an article posted on here in fact - that the NHS trust she was in is one of the worst in awarding CHC, so that is also a factor - the 'postcode lottery' aspect.

    I am not sure what to advise you. Do you agree with the domain scorings? If not, you will need concrete evidence to be able to push these up. Just from your description, it sounds unlikely that your mother would score two 'severes', but you would need to look carefully at the Decision Support Tool (you can download it). If you then feel that she meets the criteria, and have the time and energy to appeal, it might be worth it in order to feel you have done what you can for her. I wish you all the best if you do.
     
  5. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Thank you for taking the time to write such informative replies. Had all this had been explained to us beforehand then we might not have been expecting to be awarded CHC. Your advice is greatly appreciated. Wishing you all the best.


    Sent from my iPad using Talking Point
     
  6. Miss Polly

    Miss Polly Registered User

    Feb 12, 2014
    66
    It really does depend on where you live. My Mum's case went to panel on a Thursday and she was found a place immediately. I took her on the Saturday. Bit of a shock as I was expecting it to take weeks if not months. Mum is doubly incontinent and had lost almost all her mobility. She wasn't violent at all but could shout and swear at the carers when they were administering personal care. She does the same at the CH. I would have kept her at home if we could have had more help but social services said we were on the limit. Perhaps that's why Mum got the place so quickly. I wish you well if you do appeal. It must be such a worry for you.
     
  7. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    My OH was awarded CHC one hour after an assessment was completed. He did have severe behaviour problems though. Have you been given a copy of the scores? You are entitled to have that. Perhaps phone and ask if you haven't? At least you will be able to see how they came to their decision and have something to work with.

    My Husband was awarded a high for mobility; at that stage he was walking but would fall frequently. Perversely another TP member had a Husband who had a full leg amputation but, if I remember correctly, he was not judged to have mobility problems:confused: So I do agree that as a person progresses in their dementia, and if they become more compliant, their scores go down. It's not right but it's mentioned very often on this Forum.

    I wish you the very best if you do appeal.

    Take care

    Lyn T X
     
  8. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    No we haven't had a copy of the report, will dad get a copy or does it go to the SW? The whole thing is such a minefield! Have a good weekend everyone.


    Sent from my iPad using Talking Point
     
  9. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    I had the scores/comments sent direct to me. Very important that you get them.

    Take care

    Lyn T
     
  10. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Thank you Lyn.


    Sent from my iPad using Talking Point
     
  11. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,045
    Staffs
    Mom has had a recent assessment. I was sent a copy with a one page form to fill in regarding if I agreed with the report or not and was able to highlight where I thought the scores were different. The panel meet this Wednesday.

    I hope the same system operates where you as it certainly seems to vary.:(

    I wish you well.:)
     
  12. LeedsLass

    LeedsLass Registered User

    Oct 13, 2014
    107
    Essex
    Thank you Pete, all the best.


    Sent from my iPhone using Talking Point
     

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