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NHS Framework for CHC: non-Coughlan compliant?

Discussion in 'I care for a person with dementia' started by alzuser, Jul 31, 2015.

  1. alzuser

    alzuser Registered User

    Jul 30, 2015
    11
    This is a somewhat technical question.

    I've been reading up on the law related to CHC assessments and in particular the rulings of the Coughlan case. When I compare this ruling to the CHC assessment process described in the NHS Guidance for CHC funding, it strikes me that the conditions under which the Guidance suggests CHC funding should be granted (two "severe"s in the DST, etc) are, in fact, far more stringent than those required under Coughlan.

    So I'm wondering if the current Guidance has ever been subject to judicial review on this basis. I can find no suggestion that it has been so I'm guessing that, if challenges have been brought on these grounds, then they've been resolved at Health Ombudsman level, maybe because the NHS would prefer to fold at that point, rather than risk losing at judicial review. Does anyone have any more specific knowledge in this area? I've found it hard to search the Health Ombudsman web site for information this specific.
     
  2. katek

    katek Registered User

    Jan 19, 2015
    191
    Hi Alzuser

    You make a very good point, and one that is my personal bugbear too!

    Interestingly, there is another post on this particular forum, entitled 'Prof Luke Clements CHC lecture' which contains a video clip, and mentions test cases such as Pamela Coughlan. It is quite long and goes into the whole background - which I found really interesting - but the section about Pam Coughlan is towards the end, and reveals just how low she would in fact score on the DST! Yet she of course was deemed well within the NHS remit.

    I don't know how many people have won on these grounds but I think a lot of people who start an appeal give up before the Ombudsman stage - for various reasons - so relatively few cases actually reach this point.

    It absolutely shouldn't be the case that even when someone has the necessary level of needs to qualify, they are turned down and then have to go through a lengthy, draining and potentially costly process to actually prove it.
     
  3. alzuser

    alzuser Registered User

    Jul 30, 2015
    11
    I've already watched the first half of this, but I was already familiar with what he was saying so didn't watch the rest - I will do so this weekend.

    I'd be interested to know why people give up before reaching the Ombudsman - do they get ground down by some kind of Kafkaesque system? I'm not yet sure how involved the appeal process is at CCG level - I'm already mentally prepared for lies, half-truths, scheming, wretched hives of scum and villainy, and so on, based on what I've read though.

    I can't disagree with that, though I'm not sure that it should be particularly costly until after the Ombudsman though. Are there any charges involved in an appeal?

    My position is that if the law says someone should self-fund, then they will have to do so, even that is somewhat painful to them or their family. However, it seems to me that the law, in the form of Coughlan, has been ignored, and the guidance rigged as to put applicants at an almost impossible disadvantage. It would be very interesting if someone with deep pockets (not me, sadly) could have this tested in court.
     
  4. katek

    katek Registered User

    Jan 19, 2015
    191
    In a nutshell what I have bolded. Qualifying via the DST requires one to have considerably higher needs than Coughlan, as Luke Clements QC demonstrates so eloquently. In instances where the patient is borderline on the DST (though probably eligible in 'Coughlan terms!) the CCG panel then produce their trump card by applying the factors of 'predictability' etc which have no criteria as such to measure them against, and so are very difficult to prove one way or the other. Consequently, the panel win any argument as they are both judge and jury so what they say automatically trumps anything else. And what they say is usually ratified if the appeal goes to the next stage.

    It is the potential costs of using lawyers that puts many people off going even further than that, together with the sheer time and effort involved at a time of caring for the sick person at the centre of it all.

    Ms Coughlan used the considerable compensation sum she was awarded after her accident in order to fund taking her case to the High Court. She took a financial risk to fight for her rights, and fortunately for her the judgement went in her favour. However, what then became a landmark case in law is not given the recognition it should be by CCGs, who seem to be able to interpret it to suit themselves with impunity!
     
  5. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    I thought the legal costs would be a stumbling block, until I checked our home insurance! Some policies include cover for legal expenses up to a certain amount, so it's work checking your insurance.
     
  6. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Crucially, Luke Clements points out that legislation (essentially the largely unamended 1948 National Assistance Act) and legal rulings always trump guidance. This is particularly true of the DST which, at first sight, does look - I haven't yet read it all - like a collection of loopholes to enable CCGs to justify refusing CHC.

    I'll be going through a meeting which will determine if Sue is eligible on Wednesday so I'll report back. From what I have read so far it looks quite possible but I anticipate that when you get to the nature/complexity/intensity/predictability nonsense all sorts of obstacles can be found. Apparently - I think this was on another Luke Clements video - one CCG argued that an applicant's condition was 'predictable in its unpredictability' and therefore not actually unpredictable at all!
     
  7. katek

    katek Registered User

    Jan 19, 2015
    191
    #7 katek, Aug 2, 2015
    Last edited: Aug 2, 2015
    Excellent point Stanley! And thanks again for the video link - (it might be a good idea to post it on the 'Financial and Legal' forum too).

    As you say, Luke Clements rightly points out that legal rulings always trump guidance, but CCGs seem to get away with ignoring this! Luke Clements also says that whenever there is a borderline case that could be either SS or NHS responsibility, then it should be the latter. What happens in practice is that the person ends up with Funded Nursing Care, which, when you stop to think about it does not make sense. By awarding that funding, the NHS are admitting there is a health (nursing) need, yet not taking full responsibility! The law says it is either SS responsibility OR NHS, not something in between. Pamela Coughlan got CHC not Funded Nursing Care, as that has only come into existence since her case. And if she were to be assessed on the DST today, that is all she would now get.

    For me, what is almost worse than not getting the funding that one is entitled to, is the facade and pretence that this is a fair assessment system (Coughlan compliant) when it clearly is not. What has happened is that the goalposts (re CHC) have been moved behind our backs. Changes to the NHS law (as they are to any other law) are possible, but have to be made through the proper parliamentary channels - as was the case with bringing in prescription charges for example. The changes that have happened (i.e. essentially ignoring the Coughlan decision and restricting CHC to much higher needs than that) should have been put before parliament, and if a majority had agreed, those who disagreed would still be unhappy about the change - but it would at least have been legal and democratic .

    Sorry about the rant but I just can't understand how this has been allowed to happen.
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    I can understand your feelings entirely.
     
  9. Worrywart 2

    Worrywart 2 Registered User

    Jul 7, 2015
    39
    We have just been through this and I too am totally disillusioned. Since my mother has been in hospital she has improved as her needs are well managed. When she was home with carers she was very unpredictable and had taken to leaving the house on her walker to look for her children etc. plus she was quite aggressive. However she was deemed not entitled to CHC yet entitled to the nursing element. In a way though that caused more problems as that meant we have to look for EMI nursing homes and to be honest they were awful. My mother is only 76 yet the average age in the homes we saw was much higher. My mother is also in denial about her illness and actually thinks she is 36 and so I am constantly trying to explain why she cannot go dancing or whatever. She would I'm sure be hysterical to find herself in a nursing home. We have looked at EMI residential homes which are much nicer and seem more suitable. Expensive though but I have reached the point now where we will have to pay the shortfall (£800 a month) as I am unwell and all this stress is killing me.

    Good luck to you as you manoeuvre through this minefield xx
     
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    #10 stanleypj, Aug 2, 2015
    Last edited: Aug 2, 2015
    I have now read through the whole of the Decision Support Tool and can see that, whilst the criteria for the different levels of need within the domains seem pretty clear-cut (though I am sure some will be found to be ambiguous), the nature/complexity/intensity/predictability are very vaguely explained (if we can really say they are explained at all) leaving an enormous amount of wriggle room for the decision to go against the applicant, whatever the domain levels might suggest.
     
  11. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    When Mum was assessed, not by a multidisciplinary team I might add, the assessor clearly took the DST literally. I doubt they were aware of the legal issues or had even heard of Pamela Coughlan.:)
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Yes, I was wondering how clued up the 'panel' would be. So far there's only been mention of the District Nurse, Social Worker and whoever chairs it. The DN did the initial form-filling that has got us this far and the SW is very pleasant and helpful from what I've seen so far but I know nothing about who's going to chair it or who else might attend.
     
  13. katek

    katek Registered User

    Jan 19, 2015
    191
    You are right in that although levels in most domains are clear cut, there are some e.g. Behaviour, where they are more open to individual interpretation, and so it is difficult to score a second 'Severe' (rather than just 'High') in order to qualify - (assuming they already have 'Severe' in Cognition which one would expect with AD).

    The vast majority of people end up with just one Severe and a number of Highs and/or Moderates, which is where, as you say, the complexity/predictability etc factors come into play, for which there is no measure as such, therefore virtually impossible to prove. Result = (surprise, surprise!) CHC not granted.

    (Where did those factors even come from anyway?! Pamela Coughlan's condition was not unpredictable)
     
  14. Blogg

    Blogg Registered User

    Jul 24, 2014
    64
    We obtained CHC funding for my Dad. We spent hours trawling the internet and found the Luke Clements videos really helpful. We took several hours and prepared our own checklist, the nurse in charge of CHC applications then spent several hours with me going through Dads notes and filling in her wn checklist. The DST was completed a week or so later and that meeting also took several hours, at the end of the meeting Dad was awarded CHC funding.

    Dad scored severe on cognition and behaviour as well as mediums and highs in several other areas. We expected to have to fight for Dad to be awarded CHC but the meeting went well (although I didn't attend, my sister went) having read other people's stories I believe that they were as ill as my Dad, so it does seem that it is down to the CCG's involved.

    It does seem tricky to get the second severe in the behaviour column, that's the one I'd focus on making a case around, in particular any issues in the latest few weeks or month.
     
  15. katek

    katek Registered User

    Jan 19, 2015
    191
    My father was also awarded CHC by scoring Severe in Cognition and Behaviour (plus several Highs & Moderates, but it was the 2 Severes that secured it). As you say, getting the second Severe in Behaviour is often what it rests on - but what if the person does not have severe behavioural problems?

    My late sister only scored one Severe (Cognition), 3 Highs and 4 Moderates, but did not qualify, despite us trying to argue complexity etc. She had no behavioural problems at all (she had advanced MS rather than AD) but was PEG fed (unable to swallow) and could not speak at all. In many ways her needs were greater than my father's but she was not able to score 2 Severes. It was also a different CCG - one which we later learnt was one of the worst in the country for awarding CHC.

    Many people with AD do not score highly on Behaviour either, but have more physical needs like my sister, and consequently, like her, fail to qualify unless the CCG are prepared to award on the other factors (complexity etc).
     
  16. Blogg

    Blogg Registered User

    Jul 24, 2014
    64
    It's all wrong isn't Kate. I think my Dad was unusual (from what I've read) in that he wasn't violent but unable to remember that he couldn't walk (due to breaking his hip) and poor mobility due to his LBD, he therefore repeatedly put himself at great risk of harm due to falls. He also had awful problems sleeping so was nursed 1-2-1 through the night when in hospital for rehabilitation. The hospital notes were meticulous which provided the much needed evidence.
     
  17. katek

    katek Registered User

    Jan 19, 2015
    191
    I think 'risk' is a key word, hence scoring highly in Behaviour involves significant risk to self and/or others. In your father's case it was the risk of falls.

    However, people can be at risk in a less obvious way, but the onus is on the patient (or representative) to try to prove this, which is very difficult. In my late sister's case it was her severe cognitive impairment together with inability to speak or swallow, which I argued made her vulnerable as she could neither understand or communicate pain, illness etc. We felt she needed a more specialist, higher staffed nursing home which was too expensive for the Local Authority, therefore we tried to get CHC but were turned down. As it happens, it was those very factors that led to her sudden death.
     

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