1. Laylabud

    Laylabud Registered User

    Sep 7, 2007
    111
    Kent
    I am hopping Mad today, just have to get this off my chest very sorry.

    We applied for Continuing health care from Mum, early december and have heard nothing until yesterday when the postie dropped a 28 page plus report on the doormat saying that she does not meet the criteria, it has taken them over 6 weeks to come back to us after the panel met on the 5th December. Today i have had a letter from the hospital to invite us to a Discharge CPA meeting next week. I am livid that this letter has come a day after we got the report. As you can imagine that with 28 plus pages to get through and taking it all on board it is a lot to take in. I have managed to pospone the meeting until the 5th feb.
    The report mentions the couhlan and groan reports of which i have not yet looked into.
    I feel like we are being pushed and bullied into all of this.

    Sorry for going on and on but i am so fed up and stressed with it all, as well as trying to come to terms with seeing mum getting worse as i visit her every other day, it is getting harder and harder as she no longer talks to us and just either sleeps or wanders around all the time talking to herself.

    Laylabud
     
  2. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    66
    Sheffield
    Hi Laylabud

    I'm new, and I don't even understand what Continuing Care is yet, but I can sympathise with your frustrations. From what I've read so far, getting the right sort of care and support for people with dementia appears to be a constant battle.

    I've had a quick look and here's some info from the BBC about Coughlan, which I hope you might find helpful.
     
  3. chip

    chip Registered User

    Jul 19, 2005
    400
    Scotland
    laylabud,
    I tried for continuing care as well. I never got a report just got told he didn't fit the criteria and no explaination. I think Dementia is seen as a Social thing.I no how you feel been there. I suppose you will be told the same as i was - they need 24 hr nursing care-
     
  4. Clive

    Clive Registered User

    Nov 7, 2004
    716
    Hi Laylabud.

    Though it is not much comfort to you, you have at least managed to get something in writing from the NHS. Some of us have been trying for much much longer without having reached that position.

    You will be aware that for your mum to be sure of successfully qualifying for NHS Continuing Healthcare she must score one priority or two severe “domains” on their so-called Decision-Support Tool.

    We have had one person on TP who succeeded with a score of one severe and four high.

    If you felt you were able to post your mother's score it would help us assess what chance there is of our loved ones being allocated NHS Continuing Healthcare.

    I hope you appeal and succeed eventually.

    All the best

    Clive.
     
  5. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    Total Sympathy

    Hi THere
    I sympathise and am sure that I am about to jump the same hurdle as you. I met with my district nurse on the 4thof Jan and was told that dad did meet the criteria for continuing Health care and that they would fund interim care at home for 4 weeks. I am meeting again with them next week to discuss where we go from here. I want to keep dad at home for as long as possible but would rather manage the care package myself as the agency staff are not as good as employing your own careres. What we need do is get together and share our experiences I wish you luck. Keep posting.
     
  6. Louise.D

    Louise.D Registered User

    Apr 13, 2007
    68
    Essex
  7. sallyann

    sallyann Registered User

    Mar 8, 2007
    9
    As mentioned previously Mum 'scored' one severe and four highs and was granted continuing care, although we dont feel that this was a success as it is for a period of two months. Mum has been moved today to an EMI home and we have now four weeks left of funding as the decision was back dated. I dont think we will be surprised when in a month she will be declared as improved and as no longer qualifying. how anyone with such a disease can make a permanent improvement is beyond me, (as stated in their own tools the improvement has to be permanent and not transient).
     
  8. alirob

    alirob Registered User

    Mar 11, 2007
    8
    warwick
    i can understand exactly your emotions at this incredibly difficult time. My Mum died last August of AD. We had to battle for her to receive fully funded care. She was desperatley ill and was refused it by her health authorities. Do not accept the first decision that is given to you and don't let anyone bully you into accepting the decision. My sister and I became experts on funding care, asked lots of awkward questions about Mum's case which the health authorites did not want to have to answer and we finally "won". However it was a hollow victory - one that noone wishes to have because it reflects the devastating impact of AD on a loved one and also the fact that death is imminent.
     

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