1. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    I applied for NHS Continuing Care for Mum who has lewy Body Dementia in July. A week later I got a load of stuff to sign to give them permission to start looking at records. Mum was visited in the Nursing Home in early September. Only just got around to chasing it up as I mislaid the letter with contct nos. etc. Spoke with a very nice woman on Monday who said Mum's case was being referred to an independant panel next week Apologised for the delay but they had to get further specialist input for the mental health issues. As Mum is in an EMI home I would have thought it clear from the satart there were mental health issues. Conversation goes on,

    Has Mum seen a Consultant Psychiatrist

    Yes, she saw on several times in hosptial last year

    An old age specialist?

    Yes, attached to the regional Dementia centre near where I live in Chilwell. The correspondance is in her hospital notes.

    I could do with seeing that......

    (Pause....I signed about 4 things to give permission, they are going to panel next week and they have not even seen her notes or asked me for any input)

    Oh...I have all her notes would you like to send me a copy!

    That would be very a useful. These cases are difficult you know sometimes people stabilise (shades of Ladyman) and then get worse.

    Well Mum has Lewy Body - the devil is that it can fluctuate half hourly..

    Yes it makes it difficult. They might find some input from you useful

    Well, I would be very willing to do it by phone in person or letter.

    The lady then took contact numbers. I will now copy all the relevant bits from Mum's notes and lots of stuff about Lewy Body and the instability it can cause.

    Now I am wondering if I had not made that call, would my Mum's case have gone to panel without any info from Mum's notes or proper info about the nature of lewy body, its unpredicatability, how difficult it is to treat and how the usual drugs to help sleep agitation etc. can cause death!

    I now have the chance to make some real input - again its a case of those who shoput loudest, or at least have the energy left to should loudest get a say. I will keep you all posted. And if of course I get a no for funding, I have a very interesting phone call that I can use an ammunition to keep on going!

    Geraldine
     
  2. Jude

    Jude Registered User

    Dear Geraldine,

    Keep shouting and don't stop until it's sorted. It is the only way to get heard.

    Jude
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Geraldine, makes you wonder what the professionals do all day if you have to supply the relevant medical info doesn't it? Keep on posting, want to know how you get on and if we can help, in any way, between us all, If we can, we will!! Love, She. XX
     

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