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NHS CHC Appeal Advice Please!

Discussion in 'Legal and financial issues' started by SpidersWeb, Jun 12, 2015.

  1. SpidersWeb

    SpidersWeb Registered User

    Nov 8, 2014
    Just received the result of my mothers assessment for NHS CHC funding and probably no surprise to most of you that she has been turned down! Do I appeal?

    My mother is 98 has advanced dementia and for the last 5 1/2 years has been a self funded resident in a specialist dementia care home where her condition has progressively worsened. She is chair/bed bound, has strictures, is doubly incontinent, suffers from severe swallowing problems(dysphagia), has recurring bladder infections, is now suffering from recurring pressure sores, suffers distress and spends considerable amounts of time calling out for Help/Help Me - she consequently is spending considerable times in isolation (according to the home to protect her from other residents).

    In March she was assessed for the second time for NHS CHC funding and scored on the decision support tool as below:

    Behaviour - Moderate
    Cognition - Severe
    Psychology & Emotional - Moderate
    Communication - High
    Mobility - High
    Nutrition - High
    Continence - Moderate
    Skin - Moderate
    Breathing - No Needs
    Drugs - Low
    Altered Consciousness - No Needs
    Other care need - No Needs

    The panel amended her Psych & Emotional score to LOW and turned her down for funding on the grounds that she does not have a primary health need! Stating that her severe cognitive impairment, high falls risk and nutritional status (she has lost a stone & a half over the last year) do not increase the overall complexity, unpredictability or intensity of her needs!

    Where do we go next - should I appeal and if so on what grounds? I attended the initial assessment and had input into her scores for the Decision Support Tool which I largely agreed with but this was still not sufficient to gain her funding when assessed by the panel. The attitude seems to be that all her needs are predictable and taken care of in her specialist care home and therefore she does not need CHC funding.

    Any help/advice with this would be gratefully received.
  2. katek

    katek Registered User

    Jan 19, 2015
    I can empathise with you as your mother's scoring was virtually the same as my late sister's (she had advanced MS rather than AD but had cognitive impairment too, rated as 'Severe'.) She too was considered 'predictable' - which I have heard described as the NHS 'get out clause' for not providing CHC! The fact that her condition was far above that of Pamela Coughlan (after whose landmark Court judgement the whole National Framework and DST came into existence) did not seem to count. We appealed but lost, as basically the panel are judge and jury and what they say always trumps anything else. If you have the time and energy to mount an appeal, and feel strongly about it as we did, then I would say do so, but, bearing in mind the above, be realistic about the result.

    One of the several points of our appeal was a couple of the scorings, and although we got one of them moved up, it still didn't count for anything. Although the NHS' own guidelines say it is possible to get CHC with one Severe and a number of Highs/Moderates, I think this is extremely rare in practice. Two Severes is really what you need, and for people with AD, the second 'Severe' is usually in the Behaviour domain, and requires pretty extreme behaviour to score that highly. My father obtained CHC in this way, but he is also sectioned due to his aggression/behaviour. Unfortunately, if the AD does not manifest itself in this way, the patient loses out financially despite their numerous other symptoms. Sorry to seem so negative, but that is the reality of the system we are all up against.
  3. geum123

    geum123 Registered User

    May 20, 2009
    Yes, Spiderweb, it definitely is worth appealing.

    You need to show how the domains interact.
    It stands to reason that as many of them are marked as high, these needs will be complex and intense.

    Download the NHSCC framework and fill it in your self.
    All the information must be Evidenced based. ( from Gp, carehome notes, nurse, psychiatrist ect. )
    Keeping a diary about what's happening to your Mum helps too.

    I'll pm you.
  4. missmarple

    missmarple Registered User

    Jan 14, 2013
    I had a similar situation with my dad. The crux of the matter as KateK has said is that you need 2 severes to qualify. They downgraded my Dad's behaviour to moderate even though he needs 1:1 throughout the day to manage his behaviour. A common CCG tactic when assessing dementia patients. He scored fewer highs overall than your mum does as he has few actual physical difficulties.
    I stated I disagreed and that his b/our should be severe, and stuck to my guns and eventually they agreed with me.
    I suspect that you need to get your mum scored up in one of the domains, maybe go over their score again and think carefully about where she can move up to a severe from a moderate or high.
    Finally, I got very good advice from Care to be Different (I am in no way linked to this organisation, i just found them on a Mumsnet post and emailed them, I did not even pay anything). I think it might be worth you emailing them.
  5. katek

    katek Registered User

    Jan 19, 2015
    #5 katek, Jun 19, 2015
    Last edited: Jun 19, 2015

    Well done for getting your Dad the CHC he is entitled to by insisting that his behaviour was 'Severe', which of course it was if he needed 1-1 supervision 24/7. As you say, CCGs routinely downgrade patients where they can, hoping people will not question it, but fortunately some people do, and some of those manage to get what is their right by law. It is a scandal that it has to be such a fight.

    I agree that the best approach is to try to get two 'Severes', but that may be easier said than done. Spider's Web's mum only scored 'Moderate' for Behaviour so that would mean going up two bands. I know that was the case with your father, but he was very obviously underscored in the first place, whereas SW's mum may not have been. Unless there is evidence of extreme behaviour, it will be very difficult to score 'Severe' in this domain.

    The other problem is that there are only a limited number of domains that actually have a 'Severe' score. Nutrition is one of them, for example, and SW's mum scored 'High' (as did my sister) in this, so in theory that might be one to consider. However, as opposed to 'Behaviour' where the wording can be interpreted in different ways, the criteria for 'Nutrition' are more cut and dried. My sister was unable to swallow at all so was PEG fed = 'High', but to gain 'Severe' she would have had to be fed intravenously. We couldn't say she was, as she clearly wasn't!! And unless SW's mum is (which I don't think is the case, or she would've scored Severe in the first place), an upgrading to 'Severe' is highly unlikely, if not impossible.

    Another factor to consider is that CCGs vary widely in how they allocate CHC. I later found out that the one where my sister was has one of the worst rates in the country, so our appeal (mainly based on trying to apply the very nebulous 'complexity' arguments) was almost doomed from the start, but might have been successful in a different area. I would encourage SW to appeal, armed with as much information as possible - both the advice that has been offered here, and also what can be offered from other websites such as you mention.
  6. missmarple

    missmarple Registered User

    Jan 14, 2013
    Agreed KateK, spider's web's mum may not qualify for a severe in behaviour. Mind you, my Dad has 1:1 during the day only, fortunately at night he generally does not try and abscond/ enter people's homes, take property etc.
    I am sorry to hear about your sister. Intravenous feeding outside of hospitals is actually very rare (I'm an NHS dietitian) whereas enteral feeding (naso gastric, PEG etc) is common, and it's not that unusual for people to be discharged home/ to care homes with a PEG. So no mysteries as to why they are scoring nutrition in that way!
    Hopefully geum is giving spider some good advice, the important thing is to re score your relative and use evidence to back up your scores.
  7. katek

    katek Registered User

    Jan 19, 2015
    Interesting to hear that from a dietician. I had always imagined that being intravenously fed outside hospital was pretty rare, and thereby making it extremely difficult for people to score 'Severe' for Nutrition. That said, someone who did happen to be intravenously fed in a Nursing Home would score 'Severe', but if they did not get a second one in another domain, they would not qualify for CHC, and so be in a position of paying dearly for whatever illness they have. Just one of the many faults/anomalies of the whole DST scoring system, and one which the lawyer Luke Clements QC mentions in his damning criticism of it. (If you or anyone else is interested, just google 'Luke Clements NHS CHC' - it is long but very interesting and readable - although also depressing, as the situation is unlikely to change.)

    My sister died of sepsis following an infection of the PEG tube (plus aspiration pneumonia after inhaling vomit). Had she not been severely cognitively impaired, and also if she had been able to speak, she could have communicated her symptoms/needs before they became too late to deal with.

    Ironically, during our appeal (18 months before she died), I had tried to use these cognition/communication difficulties as one of my complexity arguments as I could foresee possible situations such as what did eventually happen. We wanted to get her into a more suitable Nursing Home, with better skilled staff, but it was beyond the budget of the LA who was funding her, hence our appeal for CHC, which unfortunately was refused.

    People with severe cognitive impairment and/or communication difficulties are always more vulnerable but sadly this does not seem to be recognised sufficiently.
  8. Maaarrghk

    Maaarrghk Registered User

    Jan 2, 2013
    Definitely appeal. And keep appealing all the way to the Ombudsman if that's what it takes.

    I am also just starting the appeals process and am amazed at some of the inconsistencies I have found between what was agreed at the DST meeting and what was put before the panel.

    Go through everything with a fine tooth comb and use the complexities (how one domain interacts with and affects another) to fill in the final domain ("Other").

    Have they done everything as they should? In my case, the mental health part of the assessment was done behind my back despite my insistence that I should be present and was also done by just one person - I have been told it should have been carried out by 2 mental health professionals, but will have to trawl through the "National Framework" to verify that.

    Is there something unproven? As an example, I twice asked at the DST meeting at the care home for it to be demonstrated that my Mum is fully weight bearing (I believe that she is not) but I was ignored. So is she weight bearing or not? I have seen no proof. What is the problem in just standing her up for a few moments if she is fully weight bearing? I still haven't had an answer to that one.

    So, look at everything. Question everything. Go through the National Framework. Contest anything that has not been demonstrated and be a complete pain in the proverbial until you are granted CHC.

    Yes, they will stop at nothing to refuse. But they are banking in your not fighting, or only going through the first stage of the appeals process before giving up.

    When I was bullied at school as a kid, my little Mum fought like a Tiger to get it stopped and she succeeded. Now she's being robbed blind of what she's entitled to and paid for all her working life, its my turn to fight for her just as hard.

    So, how about everyone else?
  9. katek

    katek Registered User

    Jan 19, 2015
    The trouble is most people being assessed for CHC for the first time will not know just how much it is weighted against the patient, so are not 'on their guard' as it were, as they quite rightly expect it to be a fair assessment. Then when they, or their relative, fail to qualify, they may not feel up to appealing for a number of different reasons.

    The fact that CCGs are being allowed to act in this way is nothing short of a national scandal, but one that the average person in the street is largely unaware of. I myself had never even heard of CHC until 5 years ago when my sister was about to be assessed for it. Then, only when I researched it did I find the numerous websites that have been set up to advise and help people through the whole minefield that it is. However, not everyone uses the internet, particularly the more elderly.

    It absolutely shouldn't have to be like this - the whole struggle which your post describes so well. Would you consider sending a similar message to Jeremy Hunt and/or your local MP to alert them to the fight that sick people and their relatives are having to go through to try to get what is their right by law?
  10. Maaarrghk

    Maaarrghk Registered User

    Jan 2, 2013
    Agreed Katek.

    How much the process is biased is something I have found out the hard way over the course of 4 assessments. Only at the last 2 have I started to get to grips with it and I am still in the early stages of learning how to deal with refusal and fight it.

    I am now getting accustomed to having the wool pulled over my eyes and am starting to be able to look out for it and spot when it happens, although often it is still in retrospect that I realize it's been done.

    A letter to Mr Hunt may well be a good idea, but currently, I have neither the time to do it or the belief that anything will be done other than lip service. Consider this: we are now in a situation where government policy is that "no-one should have to sell their home to fund care home fees". But the moment they die, their children will have to sell that home, so it's lost anyway. Weasel words.
  11. fr0d0

    fr0d0 Registered User

    Dec 23, 2009
    Mid Wales
    Kudos once again Katek and Maaarrghk
  12. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    Appeal /NHS CHC

    Useful documents to help......many you will already be familiar with but I thought I would put them all down here as I won't need them any more.

    National Framework for NHS CHC and Funded NC Nov 2012 (140 pages but worth it for detail and guidance especially the appeals process)
    NHS CHC Checklist 2012 (21 pages but important to get you started)
    NHS DST (This is essential to print out and of a rough copy of your own before you go to any assessment meetings. Before this also ensure you are well equipped with as much evidence as possible, this can't be stressed enough! notes photos comments, from carers staff, if you are unable to visit get someone else to go and make notes, always look at care plans and daily records especially during the weeks prior to the assessment.)
    Fact sheet 20 age uk july 2014 NHS chc
    Fach sheet 39 age uk april 2014 paying for care home if you have a partner
    The care to be different web site has a lot of info, look on their FAQ's
    Independent Age-advice and support for older age Guide 27 CHC should the NHS be paying for your care (see the section on If you are refused an assessment)

    Use the NHS guidelines to look at the stages of anAssessment and Appeal- what is supposed to happen in which order and who does what.
    Look at especially the DST user notes No 28/29 and the 'Well managed need' often used at the three month first "refusal" of funds.
    Evidence evidence Evidence!!
  13. geum123

    geum123 Registered User

    May 20, 2009
  14. SpidersWeb

    SpidersWeb Registered User

    Nov 8, 2014
    Thanks for all your advice - much appreciated!

    Thank you to you all for your helpful, informative and thought provoking comments and advice on NHS CHC Appeals and congratulations to those who have appealed and won. Plainly not an easy task! My mother is a passive, accommodating and polite resident in her care home and will thank her carers when spoken to. She definitely is not a behaviorally difficult patient which makes it difficult to score higher in this domain. Her most challenging health condition currently is her dysphagia and subsequent substantial weight loss which without her being hospitalised and tube fed it seems is insufficient to increase her score in the nutritional domain. So I'm at a bit of a loss to know how to realistically challenge her scoring under the present system. They argued that her repeated calling out is just a sign of her advancing dementia and not a sign of her mental distress. I disagree with this assessment. Basically they assess her care needs as predictable and not complex. Personally I have found that the care homes main aim is to cover their own backs and that records are kept accordingly which I think will make it difficult to obtain additional supportive evidence. I think they are also more than happy to have my mother as a full fee paying resident as i think the majority of the other residents are LA funded at a considerably lower rate! I'm still considering whether I can put together a strong enough case to appeal and challenge the panels ruling. As we all seem to learn in this process there is no easy route, just a challenging and unjust system for us all to negotiate as best we can!
  15. missmarple

    missmarple Registered User

    Jan 14, 2013
    Hello spiders. Having looked at the DST and the nutrition domain, it looks like the most your mother could score would be a high. They have weighted nutrition so that you are either on iv fluids, or dying if you are going to score SIgnificant. In the 1st instance, that would not happen in a care home setting, in the second, you'd be on fast track.
    If her getting a high in this domain increases her chances of CHC, then go for it and push as much as you can. I would have thought that "nutritional status "at risk" and may be associated with unintended, significant weight loss." would describe her.

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