appeals for continuing care

Discussion in 'ARCHIVE FORUM: Support discussions' started by lesleyt, Sep 29, 2008.

  1. lesleyt

    lesleyt Registered User

    Sep 29, 2008

    My father has been in NHS assessment centres and hospitals for the last 4 years with his dementia, as he was aggressive and very difficult to manage.

    This has now settled, he has become quite cheerful as the disease has progressed, and he is no longer mobile following a hospital fall, so he has now been assessed as no longer needing the hospital setting, and has to move to a nursing home. He has also been assessed as not being entitled to NHS continuing care.

    I have had a preliminary meeting with the panel manager and a doctor, as first steps to an appeal, but am now probably going to drop it, as it does not sound very hopeful, but I thought I would ask for the advice of any other members that have already gone through this befre I make my final decision.

    His scores were : behaviour - moderate, cognition - severe, physchological needs - none, communication - moderate; mobility - moderate, nutrition - low, skin - none, breathing - none, drugs - low, altered states of consciousness - none.

    Have any other members managed to appeal on such low scores? I realise we have been very lucky to be funded for the last 4 years, but would like it to continue! He cannot recognise anyone, talk, feed himself, is incontinent etc., but as he is now easy to manage, these factors don't seem to count enough.

    Any advice would be welcome,

  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Lesley,

    I did try to to a thread on Continuing Care a while back.

    If you telephone Alzheimer's Head Office they will be able to help you.
  3. connie

    connie Registered User

    Mar 7, 2004
    Hi Lesley, warm welcome to Talking Point (TP)

    Have just pulled out my guidelines from earlier this year, so they should be up to date.

    I quote: A full consideration of eligibility is required if there are:

    Two or more ticks in Column A - Severe
    Five or more ticks in " B - Moderate
    Or One tick in A and four in B

    So I interpret your scores as 1 Severe, 3 moderate.

    NHS Continuing Healthcare Checklist 20 the Sept. 2007.

    There are always mitigating circumstances, so I would try to appeal.

    Hope this is of help.
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I know next to nothing about this, but I can't help feeling that to say psychological needs -none when his cognition is severe is surely a contradiction in terms. Just because he may not be able to express them doesn't mean they aren't there. After all if his behaviour and communication falls in the moderate area perhaps this is his way of expressing his psychological needs?

    It does seem massively unfair that a progression of a degenerative illness should mean you're not ill enough. Have they spoken to you about how stable he is? I always thought that was part of the matrix and no one with dementia can really be considered stable.
  5. lesleyt

    lesleyt Registered User

    Sep 29, 2008
    They have assessed his psychological needs as none, as he no longer seems to be distressed, and actually laughs quite a lot now. As there are no symptoms, they assess this as having no needs!

    With the stability aspect, I discussed what would happen when he got worse, but they did not seem to think that would trigger enough points either. Gradual deterioration does not seem to count as unpredictability.
  6. Clive

    Clive Registered User

    Nov 7, 2004
    Hi Lesleyt

    It really depends on how much your dad’s NH is going to cost his family as to how worthwhile it is to appeal. The bills add up rapidly.

    If your dad is happy where he is, which seems to be in a NHS hospital, I would appeal now whilst he is bed blocking. This is when you have the strongest negotiating case.

    I won our appeal… though it took 16 months.

    All EMI care home fees were repaid by the NHS back to the date of the first application so all the hard work was worth while, and the initial application date was crucial.

    I spent a lot of time learning how the assessment was done, and what buzz words were used. And I also involved my MP in the case…about five face to face meetings and ten or so telephone conversations. I found that my MP was quite receptive to the argument that it was wrong not to provide NHS Continuing Care for a person with AD who could not return to their own home because of safety fears.

    Our score was severe 1, high 3, moderate 4, low 1, none 2.

    Best of luck

  7. Susi T

    Susi T Registered User

    Jan 12, 2007
    Leamington Spa
    Hi Lesley

    Dad was refused Continuing Healthcare in January, he was in an Assessment Unit at the time, due to miscommunication with his Social Worker there was a delay of 2 months before I appealed, to cut a long story short I finally won Dad's case in July. It was very stressful at the time, however, I am glad I did as Dad has really started to deteriote over the past couple of months. Dad's Social worker was very helpful (she would be it transfers the cost from Social Services to Health!).

    All the very best.

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