Avoid CHC claim - it leads to nothing but angst and reduced bank balance

Discussion in 'Welcome and how to use Dementia Talking Point' started by Sethcat, Feb 4, 2019.

  1. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    My father, deaf, blind and suffering dementia, was deemed to have a very good case for ongoing CHC. The case started in August 2016 with an Advocate who said he had a good case. I paid for 2.5 years more than £15000 and the case was rejected locally and today it was rejected by NHS England as a result of our appeal. Dad met most of the NHS criteria at the level suggesting funding would be put in place. It was still rejected. The summary is that NHS operate as they see fit, rejecting and dismissing and ignoring their own guidelines and it costs only a substantial amount of money and a lot of angst and heartache by families. The Advocates are the only ones who win, despite their saying it is a good case, the criteria judging it is a good case. Avoid this dreadful situation. You cannot win.
     
  2. Ray96

    Ray96 Registered User

    Sep 29, 2018
    75
    Sorry to hear the trouble you had, what reason did they give for rejecting it?
    My mother has been on it for three months since coming out of hospital, was reviewed last week, and its continuing now with no problems.
     
  3. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    HELLO Ray

    Dad scored the highest on 8 of the 11 criteria all the way through the local and appeals process. When it got to NHS England they downgraded each category to Moderate. They don't have to give reasons and it would cost me another £6000 plus expenses to appeal yet again. Dad died on 15 January aged 96, blind, deaf, dementia and unable to know what was in his best interests. They would have had to pay only 2 years' of fees £80,000 and nothing ongoingl. Still NO. Dad worked for the NHS as a manager for over 40 years. It has consistently let him down. I am disappointed in the Advocates who maintained we always had a good case. Roslyn
     
  4. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Welcome to Talking Point, @Sethcat.

    I'm in the States and hence have no personal experience of CHC, but have read about it here.

    Please accept my condolences, and I am sorry to hear that you had such a long and frustrating experience. You are very welcome here on TP. Best wishes.
     
  5. Ray96

    Ray96 Registered User

    Sep 29, 2018
    75
    Hi Roslyn
    Sorry to hear that, It seems that I have been lucky with mum, she has always got everything that she needed, I have never had to fight for anything for her.
     
  6. Cazzita

    Cazzita Registered User

    May 12, 2018
    368
    That is just awful. The NHS let him down badly by the sound of it. Condolences and thanks for the advice x
     
  7. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    Good morning. Thank you for your condolences. I am struggling at the moment because I recently lost my husband unexpectedly and quickly. I am alone and relied on the advice of the Advocates' firm who said we had a good case. However, for whatever reason, perhaps because they did not argue strongly enough with the strongest people in the firm, or just allowed NHS to bully them, or they were offering incorrect advice in the first instance in 2016, we lost. They would not have had to pay Dad's fees any more of course, just 2 years of back payment. It would not have hurt them to recognise his frailty, vulnerability and neediness. I feel we were very unfortunate but I cannot throw any more money at this, never-to-be-won case. If someone confined to a wheelchair, blind, dear and with dementia and non-stop chest infections does not warrant NHS funding, I don't know who does. His GP who often refused to attend when he has a chest infection (he had one lung having lost one in WW2) has reported that he knew she had been 2 days running to see him and was taking his medication so hence he was aware and unneedy of funding. The whole thing is designed for failure. It is time someone in public office because truly aware of all this unfairness and developed a more caring, responsible and fair system, but that of course is unlikely. I have been left bitter.
     
  8. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    • Welcome and I am so sorry about your husband, and about this unfair situation. Just a small insight. I made friends with the nurse who used to come into my husband's nursing home to work on NHS funding. She said that my husband, despite being very very profoundly disabled, did not qualify because a big factor is unpredictability an my husband is very predictable. Interestesting and I so agree with you that it is designed for failure All sympathy. Kindred.
     
  9. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    Thank you for your comment. I think you are correct. It is a flawed and biased system. I wonder why they bother with the system (which is not freely publicised anyway so another way to avoid making payments) when it is not regulated and not designed ever to be fair. It depends on the whim of the panel members on the day. Nothing else which has guidelines for assessment would be allowed to get away with the subjectivity. I have given up as my father's estate would be only set to recover £60,000 and there are no ongoing fees to pay as he died. This is what they were waiting for. I think my Advocates could have fought harder and certainly they could have communicated with me over the 2.5 years much better than they did. I was left emailing and phoning them for information and updates. They took over £15,000 and did not treat me well. Avoid them I would say. They wanted another £7,000 plus VAT and Disbursements to put the same case to the Health Ombudsman objecting to NHS rejection. Think of a number and quadruple it. I have a bitter taste.
     
  10. Cazzita

    Cazzita Registered User

    May 12, 2018
    368
    No wonder you feel better @Sethcat. It's all terrible and it's a miracle anyone ever gets the funding they need!
    You wonder how they can live with themselves - they are SO uncaring. One day it may happen to them...
    Sorry to hear about your husband - you really have had a hard and horrible time. I hope you heal and can find peace and move away from this part of your life. Be good to yourself x
     
  11. 70smand

    70smand Registered User

    Dec 4, 2011
    257
    Female
    Essex
    It’s so sad. My dad was so erratic with his moods and aggression that my mum could no longer care for him at home but he would not go into a home. Lots of care home managers and staff in the memory clinic suggested that he sounded like a really good candidate for chc funding. He ended up in a psychiatric hospital, was drugged up to the eyeballs, where his mood was much better, but he could now no longer feed himself, walk properly and became incontinent. The wonderful sister of the ward spent hours filling in the forms with us and a social worker, even coming in to work on her sunday off to complete the forms and it all made awful reading, but guess what, he didn’t get funding because in the month he had been in hospital on the meds he was now deemed as ‘stable’. He did get FNC though, but no nursing home would accept him with his aggressive history except one, and he’s now been there for two years.
     
  12. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
     
  13. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    I dearly wanted to be able to say to my poor old Dad that he was no longer paying £3000 a month for "bed and breakfast" as he saw it! I wanted to put that money into his savings so he had something to show for it. Not to be. Deemed by biased and "we will do as we like and interpret our own guidelines how we like" panels to be irrelevant and no health need as he was incontinent, unable to weight bear, malnourished, etc etc. I think of the money I wasted with useless Advocates whom I always had to chase and who never wanted me just my cash and which they bled from me. For what is left of my life I have to hope a) I am never in such a situation and b) that I can move on. ~At the moment I am utterly empty and exhausted emotionally and physically.

    Thank you for your thoughts.
     
  14. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
     
  15. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    Oh a similar case of interpreting their criteria as THEY SEE FIT not as they intended. I am sorry for your Dad's condition and I fully understand the anger and frustration and exhaustion you have gone through and are going through. I am finding it hard to let go of this injustice and the injustice of the legal case firm who bled me dry. They cannot justify their fees and I intend to take them to task about this, passing on my complaint if I have to do so, when I am stronger. They suck you in and between each stage you have to keep paying whatever they decide they can bleed from you because you are, of course, in the loop. Biggest mistake I ever made I know now. The injustice of the "system" is intolerable to me together with the fact no one in authority is doing anything about this, or perhaps even aware of it. If an industry has a set of guidelines they should not be free to interpret the guidelines as they see fit on a whim. It is so unjust.
     
  16. Chrissie B

    Chrissie B Registered User

    Jan 15, 2019
    39
    Just curious here,
    How much does it cost to appeal if you don't use an Advocate? I'm sure your Advocate was very nice and positively charming, but do you think that you were paying someone who made more money from you not winning and persisting that you could win?
    You talk about NHS England, do you live somewhere else?
    If you felt that the Advocate might have been giving you bad advice for some reason, what would CAB suggest you could do about getting funds paid to your Advocate paid back, or at least a part of it?
    I don't know how this Advocate service works, but when I spoke to my mum's needs assessor from the Social Services, she told me the main criteria is violence to other people, and peg feeding, which is when they can no longer swallow. When I looked it up, I had the feeling that the first people who recommend you go for it would be your doctor, or nurse, or social worker. Did your Advocate suggest that you get second opinions from any or all of them if necessary before employing him?
    Unless you have developed strong feelings that your Advocate acted in your best interest, and wasn't making a lot of money to keep appealing, I would be tempted to email the ombudsman, which is a free service by the way, and something to do on an otherwise dull afternoon.

    Having said that, I agree the whole system is totally ridiculous, I wonder how many less people would need to be employed to run court cases, make decisions on who gets what amount of money to pay for this or that, and then offer appeals ensuring even more people have to be employed. Every council has to employ an amazing amount of people just to come and diagnose medical needs (used to be done by doctors and if not sure sent on to a specialist), and because these are all a matter of interpretation there has to be twice as many people who also have to be employed to read these interpretations differently, administrators to do the paperwork for the financial decision, and managing directors to guess what the new NHS handbook actually means, which is clearly ambiguous at best.
    Has anyone actually totted all those bills up, and decided how much easier it would be to go back in history when the original NHS was started when there were only 3 criteria, everyone paid a percentage of their wages to pay for it, and everyone was entitled to free medical treatment regardless of who they were or how much money they had, because at the end of the day, many people who did have savings and could afford to pay for it, had probably put in a large amount of money into the NHS in the first place. If the money wasn't enough to cover it how it was, wouldn't it have made more sense to put the amount of their national insurance up for the people who could afford to pay more?
     
  17. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
     
  18. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
    No I live in England. Once the Appeal is rejected locally and regionally it goes t NHS England who are supposedly "impartial". I say supposedly . . . . . It would be difficult to take the case to the Health Ombudsman as it is a specialist job and this is what you are paying for allegedly. The Ombudsman can only ask NHS to reconsider if he feels it was an unfair decision, but he cannot make the new NHS England panel change their mind.
    CAB are not interested in health cases, I asked them. Yes I consider the Advocate firm, apparently it transpires they are a legal claims firm "versed" in DHD, gave me bad advice and took money under false pretences. They left the chasing to me and I have evidence I always had to contact them to ask for an update, when was something happening, etc etc. They contacted me when they advised to move to the next step and that was always mentioning sums of money. When Dad was assessed for competency under the Mental Health Act it was that assessor who said he would qualify.
    I have explored complaining t the Ombudsman but must, firstly of course, complain to the Advocate service. This I shall do when I feel less "empty" and angry and grief stricken.
    I am struggling with everything at the moment, miss my Dad, dearly wanted for him what he was entitled to, and am bitter. I shall complain to the company, who incidentally were going to "get back to me" on Monday of this week to discuss the possibility of winning the next step (at a cost to them of over £7000 ANOTHER sum plucked out of nowhere). I have, as usual, heard nothing.
     
  19. Chrissie B

    Chrissie B Registered User

    Jan 15, 2019
    39
    I've used the ombudsman before, I can't give links on here, have to make more posts or something, but go back to CAB, I have already established that your complaint is NOT a health issue. Your issue is to do with a bad service by a company who clearly gave you bad advice and not only have they given you bad advice, but they are currently trying to get more out of you. I'm not sure who you got your Advocate from? Like everything else, unfortunately, there are rogue people out there who claim to be representing you and will offer you an ombudsman service. My advice here is if anything wants your bank details, you are on the wrong page.
    When I filled in the ombudsmen form, I didn't write to the company first, I used the online service to write to them. Focus on the false hope and the fact that they are still trying to get you to pay more money out. Don't contact the company in the meanwhile, the correct form from the ombudsman will make it clear what you should be focusing on with your complaint, and all complaints should be done via that form. What you don't want is a he said I said scenario. By the way, when you get there, and it asks what you want the company to do for you, go after a full refund from them, if necessary you can always compromise at a later date if you felt they actually did anything for you.

    In the meanwhile, ring your local trading standard services in your area. Make it clear that your complaint isn't to do with the NHS. Focus on getting money back from the Advocate service, and that you suspect that they are using your stress to try and get more money out of you. Sorry, but they sound like rogues, and I bet most people on this forum will agree with that. Ask your local trading standards to email you the link to complain to a free ombudsman service, so you get the correct department. Certainly at this stage, make it very clear you are not trying to fight the NHS, you want refunding for a bad service who claimed they were working for you, and kept taking money from you, which you handed over because you felt there was no other way for them to start work for you, and that they kept encouraging you to give them money, and due to your stress, you fell for it and that this Advocate is now suggesting a further £7000 to be paid to them. This is a clear structure that is used by 419 scammers, and even if they are an official company, they are still using the same techniques.

    Most CAB services have a volunteer solicitor come in, these are often people who aren't fully qualified as yet, but are fully versed up and keen to add to their CV about won cases. Cut out the middle man, ask your CAB if they have a volunteer solicitor come in sometimes and ask if you could make an appointment to see him/her. If they ask what it's about, tell them you feel that you have been scammed by a service and that you have already paid £15000 out, and they are suggesting a further £7000 and are willing to take your case on again if you agree to pay for it. I hope they at least had the decency to suggest that you shouldn't carry on when they asked for that money.
    Even in this area, £15000 would give you 15 weeks of paid for private care.

    If all that fails, go to a local solicitor, (not an online one) and ask if they take on any no win no fees cases, and would they be willing to take on a case of bad services given. Ensure that they collect any fees from the company and not from you. If they turn you down, then at least you know there's a strong chance you won't win, they won't take on a case unless they have a very strong chance of winning.
     
  20. Sethcat

    Sethcat Registered User

    Feb 4, 2019
    18
     

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