Clinical Commissioning Groups- Out of Control?

Discussion in 'Legal and financial issues' started by Kon Dealer, Apr 25, 2015.

  1. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    Whilst in hospital, in 2013, my severely disabled mother, who is also suffering from Alzheimer’s, was assessed by a multidisciplinary team, which included a Consultant of Geriatric Medicine and was deemed eligible for NHS Continuing Care funding, on the basis of two “severe” scores. However this finding was rejected by the local Clinical Commissioning Group (CCG) who, in their own words “chose to ignore the recommendation”. The CCG held another assessment in January 2014, where a “care worker” aggressively dominated the meeting and succeeded in downgrading the previous scores so that my mother no longer met eligibility criteria. I later found out that this person had no professional or medical qualifications. Accordingly I made an appeal through the “Local Dispute Resolution” mechanism, in July 2014, which refused to consider the process by which the assessment panel arrived at their decision and confirmed the findings of the January 2014 assessment. In this connection it is significant that no-one on the appeal panel actually went to examine/see my mother. Earlier this year I made an appeal to NHS England’s Independent Review Panel (IRP) who concluded that my mother “was eligible for NHS Continuing Care funding based on the January 2014 assessment”. Two weeks later I received a letter from the CCG which stated “the CCG does not agree with the IRP recommendation” and is refusing to fund my mother’s care.
    I find this unbelievable- how can they do this?
    Has anyone else experienced a situation like this?
    What can I do now?
     
  2. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Welcome to TP - unbelievable doesn't begin to describe this situation, is a legal challenge out of the question?
     
  3. katek

    katek Registered User

    Jan 19, 2015
    191
    #3 katek, Apr 25, 2015
    Last edited: Apr 25, 2015
    Kon Dealer

    Welcome. I echo what Mibs has said, and I think it is disgraceful that the financial 'gatekeepers' can override a clinical decision like this.

    I was under the impression that the panels usually ratify the MDT's decision, unless they have good reason not to. Are they giving any explanation? Also, who was the care worker who was allowed to influence the second assessment so much?

    Unfortunately I don't know enough about the legalities to advise you, and you may need to seek legal advice. Hopefully others on here may be able to offer some help too.
     
  4. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
  5. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    Thanks for trying. Unfortunately not only did the CCG not recognise ("chose to ignore") the first DST, which recommended eligibility, they went on to reject an Independent review Panel's recommendation.
    That is a different ball game!
     
  6. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    Mibs- I've already made enquiries. It will cost me £1000 (+VAT) just for the solicitor to look at the documentation and tell me whether there is a case.
    If there is then it starts getting expensive!
    The brief has warned me that this particular CCG has "previous" and deep pockets (except when it comes to paying for CHC:mad:)
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    I think you need to find out if the IRP has statutory powers to enforce their decision. I suspect not, but haven't checked.
     
  8. Egeon

    Egeon Registered User

    Oct 12, 2012
    98
    What was in place regarding care when you put in the dispute?
     
  9. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    #9 Kon Dealer, Apr 26, 2015
    Last edited by a moderator: Apr 27, 2015
    Jennifer- unfortunately the IRP's decision is not binding, but the CCG is "expected to accept the IRP's recommendation in all but the most exceptional circumstances"

    Two points:
    1) it would appear that CCG's can decide for themselves just what are "the most exceptional circumstances".
    2) What is the point of going through all the process of DSTs followed by appeals, followed by an Independent Review" if they can be ignored?

    The whole thing stinks.
     
  10. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    My mother has Alzheimer's, suffers hallucinations, is doubly incontinent, with heart, liver and kidney disease, anaemic, severely osteoporotic and completely immobile-she needs to be turned in bed by two carers, using a sliding sheet, to prevent pressure sores.
    She is in a care home with a specialised dementia unit. Needless to say the CCG does not recognise her as "having a primary health need" yet they do fund her "nursing care"
     
  11. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Random thoughts:-

    Would it be worth talking to Age UK, Alzheimer Society etc to see whether any of their advisors can see a practical, affordable way to challenge the opposition?

    Could involving your MP and / or the press (local and national) embarrass the opposition into backtracking?

    Could you challenge the opposition by taking your case to the relevant Ombudsman?

    Could starting an e-petition help to shame the opposition into back-tracking?
     
  12. katek

    katek Registered User

    Jan 19, 2015
    191
    By 'nursing care' I presume you mean the £109 nursing allowance, which is what most people end up with - even people as sick as your mother or worse - rather than the full CHC.

    And if one thinks about what it costs to employ a nurse (not what he/she actually gets, but the higher cost of actually employing someone), £109 does not buy very much nursing, does it?! This sort of 'consolation prize' was introduced after the Coughlan judgement, I suppose when the NHS realised they were not going to be able to afford to then fully fund everyone - as they had to with Pamela Coughlan - and saw this as what they could get away with. The result is thousands of people like your mother, with needs actually above Pamela Coughlan's, are having to self-fund all but this amount (e.g. Nursing Home of say £1,000 a week minus £109 is still a sizeable sum at £900 - or even higher).

    Lord Woolf said that anyone with needs at this level, arising from illness, should have all their care paid for - as did Ms Coughlan - even what is seen as personal care. Until such time as that judgement is ever revoked by law, it still stands.
     
  13. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    #13 Kon Dealer, Apr 26, 2015
    Last edited by a moderator: Apr 26, 2015
    Absolutely correct- we are having to self-fund all but this amount (e.g. Nursing Home of say £1,000 a week minus £109 is still a sizeable sum at £900).
    To cap it all, their disgraceful rejection of the IRP recommendation, the CCG is now threatening to withdraw the £109 since I will not provide permission for another assessment until they can demonstrate that the MDT has appropriate professional qualifications and training- which they have refused to do.
    I asked this because key personnel on the previous MDT did not!
     
  14. Kon Dealer

    Kon Dealer Account Closed

    Apr 25, 2015
    18
    I have made numerous complaints over the last week, to the people you say and to PALS- awaiting replies. Have also spoken to a retired MP who has told me that the CCG had acted in an arrogant and disgraceful way. Unfortunately there's not a lot I can do until after the election.
     
  15. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    All I can say is a heartfelt "Good luck!".
     
  16. fr0d0

    fr0d0 Registered User

    Dec 23, 2009
    186
    Mid Wales
    "Out of control" says it all.
     
  17. cliveo

    cliveo Registered User

    Sep 11, 2011
    23
    #17 cliveo, Apr 26, 2015
    Last edited by a moderator: Apr 26, 2015
    Hi

    I had a 14 month battle for my mothers case with my local CCG and many sleepless nights. I handled it all myself to start with contacting PALS, The Ombudsman and finally sought out a Solicitor as the whole process was so slow and frustrating.

    At my CCG appeal meeting the solicitor filed a report but could not attend as they clearly stated it was not a legal hearing.

    I also gained much information from this site (link removed as per T & Cs) who are endorsed by Age UK. They do offer free fact sheets to download without having to speak to anyone. Yes they do charge for an advocate service which I'm not promoting as they also provide some good free information.

    Everyone's case is different and I hope a link to these details maybe of help to anyone fighting a case with the local CCG group regarding funding.

    Cliveo
     
  18. katek

    katek Registered User

    Jan 19, 2015
    191
    I know there are statistics in the public domain comparing the number of patients awarded CHC across all CCGs, allowing us to be able to see how well/badly our own CCG performs. Aside from those regional differences, what has always intrigued me is just in general, the gap there is between the number who are put forward for CHC (having passed the checklist) and then the number who actually get it.

    What I mean is, when someone manages to pass the checklist, this has been decided by clinicians, based on the patient's medical presentation, and is a fair representation of their condition - funding does not come into question at this point. One would expect them to have at least a fighting chance of qualifying for CHC. However, when the actual CHC assessment takes place (and eligibility for funding is being considered), the vast majority of these people who were considered likely to be eligible, are suddenly, mysteriously, not actually quite ill enough to qualify !!! Shouldn't that be seen as an anomaly? To me it indicates just how much the whole system lacks credibility in the first place - then further compounded by the postcode lottery factor.
     
  19. Loopysoo

    Loopysoo Registered User

    Jan 3, 2014
    1
    same boat

    Hi, I'm in the same boat as you, only difference is I'm caring for mum myself 24/7, except for 2 carers half an hour 3 times a week to give me a break...( except I have to usually help out as carers dont have a clue!!) Mum has an air-flow bed and I turn her about 4-5 times daily, she has no bedsores as I import a pure olive oil soap from Greece (name papoutsanis) which I use for her bed bath, its brilliant. As in your case after assessments galore all that is forthcoming is IF I put her into respite she is entitled to £109 help ONLY. TOo top it all with the new carers law (at least in our area) the carers support grant has been withdrawn (up to £200 once yearly)and it now comes through other channels....trouble is they are now putting some many obstacles/new assessments etc into the mix that many carers have just given up chasing them up. Just saying....anyway just lately my mum has started hallucinating a lot more, I put it down to the fact she had a seizure (where she nearly choked after inhaling her own vomit) luckily I knew enough to keep her going til the ambulance arrived..the hallucinations start at the same time roughly each day and follow the same pattern, sometimes I can reassure her, other times she gets quite worked up, its difficult to know whether to humour her, say yes and go along with it, or try to dispel the illusion. Whatever I do though after 5-10 mins time-out..were off again! I havent tried medications as she isnt at all violent, but does swear a bit!
     
  20. wilf

    wilf Registered User

    Mar 19, 2014
    30
    Kon dealer, greatest sympathy but you wont get it. I have same problem, see my earlier post. C.h.c. is a farce when it comes to dementia.
     

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