Query re-Aricept etc...

Discussion in 'ARCHIVE FORUM: Support discussions' started by Jane1, Jul 8, 2007.

  1. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Hello all, Wondered who could give me a little advice,from their experience, of the drugs that can help alzheimers and when they are introduced. I understand about NICE rulings and that it's all just reached the high court but during the whole time of dad's illness it's never even been mentioned! He's on sulperide and recently they've added an anti depressent in. Social services have been next to useless and now to top it all the attendance allowance we applied for, on ss advice! has been turned down due to the fact he's in a care home, which, i hasten to add we are paying for.
    For those following my mum's cancer fight...... mum is home and fairly happy, had some bad nights though. I managed to get her to see dad at the care home yesterday and it was very emotional, mum cried. Dad was very good and we even got away without a fuss as they took him off to lunch. How very sad that after 52 years of marriage ,this is how it has to be. As a daughter ther's a valuable lesson to be learned and that is to grab life with both hands and live it.
    x
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Jane

    There is a factsheet about the drugs used to slow the progression of AD;

    http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm

    John is on Reminyl, and it has been wonderful for him, but some people can't tolerate the drugs at all, and others find there is no benefit. It's always worth trying, if you have the opportunity.

    At the moment the three original drugs can only be prescribed for moderate stages of the disease, and Ebixa is not prescribed at all, though it may be available on private prescription.

    I'm glad your mum was well enough to visit your dad, and it's wonderful that he was able to accept the visit without being upset. It must have been very upsetting for your mum, though.

    I believe it's normal for attendance allowance to be withdrawn when the person goes into care, but others will know more about that than I.

    Love,
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    #3 jenniferpa, Jul 8, 2007
    Last edited: Jul 8, 2007
    No No it's NOT normal for attendance allowance to be withdrawn: that's only if someone is hospitalized. Let me see if I can find some references

    Jennifer

    OK: AA ahould only be withdrawn if SS are "assisting you with the payment of your care charges". Are they?

    This is the directgov page about this
    http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/CareHomes/DG_10031411

    Incidentally, have you considered applying for AA for your mother? If she is considered terminal, she may be entitled.

    This is the link for appeals
    http://www.direct.gov.uk/en/MoneyTa...tsAndOtherSupport/ClaimingBenefit/DG_10013949
     
  4. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    Hi Jennifer, We are funding all his carehome bills apart from 1 day at day care, which we don't get charged for. This was set up before he went into care and has carried on.
    We applied for AA before mum was officially diagnosed but got refused! The hospital have written to then and she now comes under a DS1500 'special rules' but you have to fill all the original forms in AGAIN and get a doctors letter AGAIN and she only has a few weeks left. To be honest, I simply can't be bothered to deal with them....
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Ok, I can understand that you don't need the hassle for your mother - this is a difficult enough time for you. However, even with everything else you've got happening, you really should appeal regarding the AA for your father, and importantly, there is a time scale you have to follow. Specifically, if you want the decision maker to look again at your application you need to make the request within 1 month. This is from the RNIB site, but the process is the same for everyone (although phoning is OK, I would also follow up with a letter to make sure that you "stop the clock")
    http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_challenge_decision.hcsp
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    You learn something every day.

    My mother was totally self-funding, yet from day one in her NH, her AA was withdrawn. I was told this is standard practice, she would not need 24 hour care at home so there was no call for AA.

    I accepted the decision without question. How green was I?:mad:
     
  7. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I was told that too, Sylvia, when I went to look at NHs.
     
  8. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,511
    No No No! Attendance Allowance should not AFAIK be stopped just because someone enters a care home. The Government website had a table here that explains what should happen if you enter a care home:

    http://www.direct.gov.uk/en/HealthAndWellBeing/HealthServices/CareHomes/DG_10031411

    It should only be withdrawn if you are having your fees paid for you!

    Attendance Allowance is all about what help the person needs (ie how much they need to be "attended") - it should not matter whether they are at their own home, someone else's home, or a care home. They still need the help. AA is paid if if someone does not actually receive the care they need; it;s about held needed - not received. Someone in a care home doesn't automatically no longer need care - they are just (hopefuly) more likely to be getting it.

    It does make sense that it is withdrawn if you are not paying yourself though.

    I think you should appeal the decision. Did you get someone to help you fill in the form? If not then you should consider this, for example someone from a CAB or Age Concern, they will know what to say and think of loads of things you probably would not.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    When I think, my mother was in a care home, self funding for 6 years, and received no AA all that time, it makes me so angry.
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Sylvia I "think" the rules may have changed about this in the last couple of years - I vaguely remember reading something about it.

    Jennifer
     
  11. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    attendance allowance

    helo ther,new to this site,my dad has alzheimers and won't admit it,what can i do?the G.P says she can't do anything till he admits he has a problem.anyway i work in a care home and actually the home claims the attendance allowance for residents.i have been asked several times what care we provide for people in the home,we say none as they can see to themselves yet the allowance is claimed.wrong in my eyes.ta for reading.any advice is most warmly welcomed am at my wits end
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Elaine, welcome to TP.

    I don't really understand the problem with the GP. Is your father refusing to see him, or has he seen him and is refusing to see a consultant?

    Without a diagnosis, your father can't be prescribed any medication, and won't be eligible for any assistance.

    Could you perhaps persuade him to see a consultant on the grounds that yu are worried about his memory -- or his diet -- or anything that he might go along with?

    It's a difficult one, I hope someone else will have some suggestions.


    I didn't dare argue with Jennifer, :eek: but this is what I was told happened. The home claimed the allowance, and theoretically it is deducted from the fees, but..........
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,875
    Kent
    Hi Elaine, welcome to TP.

    What is your father`s attitude to money? My husband wouldn`t agree to anything but when I told him the Attendance Allowance was money, he changed his mind. He now thinks he`s been very clever and gets AA even though he`s better now.

    Can you give a bit more information about what causes you to be at your wits end. What particular problems are you having with your dad. Are you his sole carer or do you share the care with others in the family.

    Take care
     
  14. Jane1

    Jane1 Registered User

    Mar 3, 2007
    54
    Leicestershire
    wow

    wow, thank you everyone for your replies, i think i hit a nerve!!! Your advice and links are great and my sister and i will definetly follow dad's case up. Will let you know how we go on.
    x
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Are you trying to imply I have a foreceful personaility Sylvia :D

    I'v heard of this happening with the nursing care contribution, but not with AA. If it really is AA AND the nursing home resident is paying for their own care, I think it's fraud rather than simply a bit dodgy. If it's AA and the LA are paying it's definitely fraud, because that is an absolute line: if you get LA funding you don't get AA.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Can't let my friend Sylvia take the blame. 'Twas I!

    And that wasn't exactly the description I had in mind!:D
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #17 Margarita, Jul 8, 2007
    Last edited: Jul 8, 2007
    elaineo2
    I wonder if you mean that the AA is pay towards they self funded care home fees ?

    Just like it is paid towards care home fees if your not self funded

    I know you say
    but I don't get that :confused:
    as people that live , where you work in care home must get they meals cook for them , entertainment, beds made , rooms clean etc.

    They don't do all that for themselves do they ? what kind of care home are you talking about that you work in , if you don't mind me asking?
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Oh embarassed, embarassed, embarassed. I am SO sorry Sylvia (but I'm not apologising to you Hazel :D :D )

    How you could think this of me: mild mannered and meek is my mantra :D Sob.
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Congratulations! You do such a wonderful job of camouflaging it!:D
     
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #20 Margarita, Jul 8, 2007
    Last edited: Jul 8, 2007
    This is the tread elaineo2 started



    http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=7188


    If you don't mind me saying Hazel .

    That elaineo2 may still able to help with AA & assistance even if her father has not been told he has dementia
     

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