Continuing Care Funding Advice and Appeals

Discussion in 'Middle - later stages of dementia' started by flower1, Jan 27, 2015.

  1. flower1

    flower1 Registered User

    Apr 12, 2013
    I finally got to speak with my Mum's doctor about mum's condition and some concerns I had (she is in fifth year of vascular dementia) and has been in nursing home for this time. Doctor has confirmed Mum in very severe stage vascular dementia care, has major cognition issues, not aware of surroundings, immobile, incontinent, no speech now, reflux problems, does not know me and most importantly has to be fed softened diet and thickened drinks with prompting to eat via nurse .He was very surprised that mum although very severe is still not fully funded at this stage? I have been turned down every year since mum lost her funding 3 years ago (due to no complexity). He said to speak to my local council or even MP or appeal as he feels at this stage she should be? Just looking for advice/feedback for anybody else who has done this, how and if won their case? Just feel I have to keep fighting for Mum's rights. As doctor confirmed if Mum was not fed and nourished then how would she survive? Thank you for reading x
  2. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I think the argument might well be that although your mum needs feeding and support with every area of living she does not need someone with medical training to provide this support.I'm not saying I agree by the way.
  3. flower1

    flower1 Registered User

    Apr 12, 2013
    #3 flower1, Jan 27, 2015
    Last edited: Jan 27, 2015
    Thanks for your reply but to me the administering of all the many liquid medications my mum is on daily requires careful monitoring under nursing care, monitoring seizures that have taken place, compromised swallowing reflux when fed by nurse re: choking risk, past chest infections, checking and monitoring of any bed sores or potential broken skin that could lead to infection? Surely that is why it is called a Nursing Home being cared for 24 hours a day under nursing care plus carers.
    To me the more severe you become in this cruel illness the more you are penalised by it
  4. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    I couldn't agree more.The complexity of the system alone stacks the odds against our loved ones and their families.Sometimes it's all too much.Your dear Mum's needs certainly sound very complex and I wish you the very best of luck.
  5. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    I think they woukd say that is why the NHS pays the Nursing allowance rather than justifying CHC funding. More specific criteria have to be met for the latter.
    My husband was denied it too despite severe health issues.

    To be honest, I doubt that the opinion of a GP would carry much weight. My husband's consultant said that he would be fully funded - but he wasn't.
    A lot depends on the health authority where you live.
    You could always appeal - if you have the stamina to carry it through.
    I don't I'm afraid.
  6. Happyone

    Happyone Registered User

    Apr 2, 2008
    I don't post very often, but really wanted to say that you must keep going as far as NHS CHC is concerned.

    Our experience was awful and very stressful, but common as far as we can see. From the initial assessment with the NHS CHC Nurse Assessor (or "smiling assassin" as we now like to refer to her.....) we found we were mislead constantly and the Guidelines they are supposed to follow totally ignored. The appeal process is not an easy path, you have to be determined in your belief and you have to develop a thick skin too!

    Following being turned down at the 3 month review (having known nothing of the first assessment apparently being carried out in hospital, for which there has never been any paperwork produced), we appealed the decision. This process was still ongoing when we managed to obtain CHC at the annual review in 2014.

    We still didnt give up on the first years funding, certain in our belief that MIL's health needs were such that she was eligible and continued with the appeal process, going to NHS England.

    There were many issues along the way, but suffice to say the Local Appeal process was flawed and NHS England told them to review. We were still pushed from pillar to post at local level (albeit always knowing at this time we could go back to the NHS England stage at any point as this had been agreed). However, finally the decision was overturned and it was decided MIL should have been funded from Day 1 of entering the Nursing Home. This took 2 years in total - and you would not believe the amount of paperwork we have at home by way of evidence etc.

    Please don't give up. Remember that "well maintained needs are still needs" - read lots and carry on!

    Kind regards,

  7. Daisysmum

    Daisysmum Registered User

    Jul 25, 2013
    So sorry to hear you are struggling to get funding when your mums deteriorating health will be causing you such distress. Your mum sounds similar in condition to my mum. We were refused funding twice but I kept on appealing and they then granted it. My advice would be to download the paperwork for continuing healthcare assessment (its a huge document) and try hard to understand it and how your mum's conditions fits into each section. Make loads of notes of all your mum's conditions and problems and don't assume the assessor knows anything as they have only met your mum for 10 minutes and have looked at the homes care records. These records are of variable quality and may not give the whole picture, so it is up to you I am afraid to complete the picture. Go to the review meetings with a relative or friend who can understand and also support you and your mum. Most importantly get the help of the volunteers from Alzheimer's Society who have such a lot of expertise and experience of winning appeals. They helped me with information and emotional support and encouragement. Unfortunately, this funding is reviewed each year and you have to go through the whole process again, which can be stressful. Keep on fighting.
  8. Navara

    Navara Registered User

    Nov 30, 2012
    "To me the more severe you become in this cruel illness the more you are penalised by it"

    This is how I'm feeling at the moment Flower 1.

    Mother has been in hospital from residential care home and on discharge we now have to find her a nursing home as she has deteriorated so much. No CHC funding (what a surprise) and now having to find twice as much from her remaining meagre savings to pay her fees. Is there ANY other illness where this unfairness is so rampant?
  9. flower1

    flower1 Registered User

    Apr 12, 2013
    Thank you again for your kind words and feedback, much appreciated x
  10. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Saffie, I know what you are saying and I do have to agree that I also feel that it depends on the health authority of where you live. May think about appealing as next care review should be in next 2 month. Thank you for taking the time to reply. All the best with your situation too x
  11. flower1

    flower1 Registered User

    Apr 12, 2013
    Thank you for your valuable feedback, I have read it all and do agree. Well done on winning your case. I will not give up x
  12. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Daisysmum, thank you for your valuable feedback. I will be contacting the Alzheimer's Society volunteers ref: appeal procedures and further advice. Thank you x
  13. flower1

    flower1 Registered User

    Apr 12, 2013
    Hi Navara, firstly thanks for taking the time to reply. I am sorry to hear that your mum is in a similar situation and my thoughts are with you on this and best of luck for finding the right nursing home for her. I agree that is there any other illness where this unfairness is so rampant?? We had to sell my late father and my mums property to start to fund nursing care once mum lost her original CHC funding, they had both worked so hard all their lives to pay off their mortgage hoping they will be leaving something for their beloved grandchildren. It's a disgrace how they seem to have the checklist sheets for these meetings so structured to give all the wrong ticks in the wrong boxes, then add your score up at the end then I go and see my mother looking so ill, not knowing anybody or her surroundings, prompted to feed, incontinent, too ill and weak to lash out to have complex behaviour and you think to yourself this is real and not what is ticked off on your paperwork!! Sorry to speak to the point but this is how I see it with the CHC scoring system... Thanks again and good luck too with your Mum x
  14. cf1611

    cf1611 Registered User

    Apr 16, 2014
    I agree with you the care your mother needs is pur nursing care. Swallowing problems alone are a complex issue and your mother needs a skilled person to feed her. If she aspirates she is likely to get chest infections or even aspiration pneumonia.
    My mother was in a similar position and repeatedly aspirated on her food and had chest infections almost every other month, each one making her weaker. I fought for 2 years to obtain CHC funding for her with no success. Finally on December 16th she had another assessment and this time the MDT acknowledged that she had a primary healthcare need.
    On 29th December she developed yet another chest infection, however this time the antibiotics no longer worked and she deteriorated rapidly and 24th January she lost her hard fought batle for life. We never received the final decision from the ratification team so she never received any funding.
    When the grief subsides I fully intend to appeal retrospectively.
    The national framework is a nonsense and is so subjective, it appears to me that the incidental and ancillary test is a cop out. Dementia is recognised as a terminal illness and causes so many other HEALTH problems, I would say to you fight on.
  15. flower1

    flower1 Registered User

    Apr 12, 2013
    Thank you for taking the time to reply at what must be an emotional time for you and firstly my condolences on the passing of your mum. I def agree with you and I feel too that the ancillary test is a cop out and dementia is a terminal illness. Sometimes I also feel annoyed with the nursing home manager as before I have the meeting they always say oh well your mum's needs are not complex enough, it would be nice to het some support on this side too?? But then as long as they get their monthly cheque from me they wont be bothered either way?? Good luck with your appeal and I hope you get back everything you are owed - I will certainly keep fighting on. My thoughts are with you at this time, take care x
  16. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    CHC Checklist assessment Do points make funding?

    Indeed cf1611 and others fight on indeed

    I can give you the name of a brilliant solicitors that will give you detailed and expert advice on how to back date claims, and also how to complete CHC checklists. They will also get one of their own nurses to look over your info and give a fairly FREE accurate guide as to whether they believe funding would be granted.
    We are about to embark on this complex system that seems most unfair and undignified.
    My Dad is soon to go into a lovely new care home, Mum cannot cope any longer she is exhausted even with the help of carers and myself its all getting too much for her.
    I have had a look at the CHC checklist which merely is a guide for the full assessment.
    It doesn't seem to matter that Dad is confused, emotional, has occasional bouts of aggression towards Mum, does not recognise Mum or where he is, has no empathy, does not understand routine and times of the day, does not comprehend that dark and night mean bed, has obsessions, repetitions of behaviour, anxiety and fear, has hallucinations, talks to "people" who are in the house, confuses real life people and those on the TV, cannot have a shower with out prompting, tries to have a shower in the sink twice in the night, gets dressed several times a night, keeps trying to unlock doors in the night, paces from room to room unable to settle, cannot answer simple questions, pleads with tears to be allowed to go to bed at 5.30 pm, keeps asking to go home when he is at home, rings the police to report he is trapped, uses incoherent speech, needs reminding to chew his food and eat whats on his plate, can either turn off the light or shut the door not both, gets so frustrated he becomes confrontational and can push Mum out of the way leaving marks on her arm....................No, none of this will "score" him enough points for any funding because he can still walk (albeit in a sometimes wobbly way and only for about 15 to 20 minutes) and use the toilet!(misses often)
    It seems that communication, cognitive, emotional and behavioural needs are not as important as walking and using the toilet.......well thats what an initial quick look at the assessment has thrown up, we go for the official CHC checklist assessment in a couple of weeks. Maybe I have "scored" it wrongly. But at least it will provide a baseline from which to work and we can request another assessment soon and again as his needs change.
  17. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    My Dad got CHC granted just on his behaviour alone. I will look up his scoring a bit later and post back.
  18. PeggySmith

    PeggySmith Registered User

    Apr 16, 2012
    We had a paid advocate who got CHC funding for MIL who, by the way, isn't as poorly as your Mum. If you're interested, I could pm you a contact number.
  19. marts1711

    marts1711 Registered User

    Oct 25, 2014
    CHC Assessment

    Hi All
    I wanted to start a new post for this but for the life of me can't suss out how to do it.
    We have an assessment this coming Tuesday for NHS CHC for my dad who is in an EMI nursing home. It should have been done a month ago but dad was rushed into hospital with low BP on the morning of the assessment so it has been rescheduled.
    He has been awarded FNC already when he first moved to the home just after new year.
    I have spent hours upon hours researching the process, I have the DST and have filled in every domain as I see it.
    I would really love to see how they scored your dad Rosie.
    Dad has multiple co-morbidities. dementia, heart disease, diabetes, chronic kidney impairment, enlarged prostate so in dwelling catheter, deafness, psychological problems, multiple medications that need monitoring, he is weeping everyday. He wanders at night, gets aggressive with other patients, over eating, being found at fridges in the kitchen taking food, has gone into other patients rooms and taken chocolates etc.
    I think this all adds up to a 'primary health need' but I bet you we don't get it. I am not looking forward to it one bit but I am determined to fight so my dad does not have to use his hard earned house to pay for his care
  20. Not so Rosy

    Not so Rosy Registered User

    Nov 30, 2013
    Dad was assessed as having a Priority Need for Behaviour, a Priority need automatically triggers CHC.

    He had a Severe need for Cognition, 2 Severe needs triggers CHC.

    Dad then had 4 Low Needs and 6 No Needs.

    Priority Needs can only be gained in Behaviour, Breathing, Drugs and Meds, Altered States of Consciousness.

    Severe needs can be gained in Behaviour, Cognition, Mobility, Nutrition, Skin, Breathing, Drugs and Meds, Other significant care needs.


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