CHC Funding for Lewy Body Disease? Anyone got it?

Discussion in 'Legal and financial issues' started by MissDiane, Jan 29, 2017.

  1. MissDiane

    MissDiane Registered User

    Oct 18, 2013
    73
    Just wondered if anyone has been awarded CHC NHS Funding for a family member with Lewy Bodies Disease?

    My mum is in the advanced stages and due to the nature of the disease i feel she scores Severe for communication and Behaviour.

    Due to the two being interlinked mums behaviour can vary from hour to hour and day to day, so is unpredictable but frequent and can be severe.

    Has anyone any advice of getting funding specifically for Lewy Bodies due to the unpredictable nature of the disease and its complications in fluctuations in cognition and emotion. My mum is often very distressed when she is lucid as she realises what is happening but at other times she just sits with her eyes closed and tries to block out everything around her as its so distressing. She is an EMI home.
     
  2. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    No knowledge of LBD but surely that doesn't matter? CHC uses (abuses:mad:) a template applicable to all diseases to decide on awarding or withholding CHC.

    I'd have thought the unpredictability you mention should help you get the CHC award.
     
  3. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,109
    hertfordshire
    My Mum has Lewy bodies, horrible form of dementia as are all of them, we have not managed to get chc yet for her even though like your Mum she is agitated and angry, her moods can change in minutes, days or hours, she has to be fed now as she can't do it herself and her communication and mobility is very poor, she needs two carers for personal care. In fairness hardly anyone seems to get chc, especially patients with dementia, it is seen as a condition, not an illness :eek: xx

    Ange
     
  4. CCGcrusher

    CCGcrusher Registered User

    Aug 24, 2016
    35
    Levy body

    My mother has Dementia with Lewy Bodies. Our local CCG denied the diagnosis, saying it could only be proved on autopsy. Basically they were scared stiff that because it causes hallucinations and unpredictable behaviour they would have to fund her care.
    I eventually won, but you have to be aggressive and relentless in dealing with your CCG.
     
  5. Aitchbee

    Aitchbee Registered User

    Nov 3, 2013
    87
    My Mum has LBD and has been CHC funded for the past 3 years. She initially got it when she was transferred from hospital to a nursing home. They withdrew the funding after 3 months but we applied again a couple of months later and it was reinstated. We had a lot of support from Mum's social worker. We now care for Mum at home and the CHC funding pays for carers to come in. I think it is a bit of a postcode lottery as to whether CHC is awarded. I read accounts on here of people who have seemingly good cases for funding being turned down. The only advice I can offer is to stress the unpredicability of LBD. Be prepared and go through the DST prior to the assessment and identify worst case examples for each section, e.g. agressive behaviour, psychiatric symptoms (depression/anxiety), risk of falling, skin viability, etc. People with LBD require expert care and nursing. It might be as well to go to the assessment with information about LBD as not all health professionals have a lot of knowledge about this disease. All the best!
     

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