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  1. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    I was wondering whether anybody has ever got a second opinion, after the first diagnosis of theyre loved ones.
    Im not completley satisfied with my mums diagnosis, and feel i would like to get a second opinion but im not sure on how to go about it.
    its been a year now since mum was "diagnosed" first with a very progressive dementia similar to CJD and given a year to live, one year on and it seems now its not that progressive and they cant say how long she has:confused:
    We still havent been told what kind of dementia mum has... the consultant dosent know apparently it dosent matter anyway!!
    As my mum had suffered brain damage before the diagnosis which resulted in short term memory, i feel that most of mums mobility problems are down to the drugs theyre giving her.
    she clearly is very depressed and is now on seroxat, when we went to visit today she was sat in a chair bent over with her head nearly on the floor, the nurses were sat around a table having a coffee!!!
    why couldnt someone just sit her back?
    i could go on and on.
    any advice on how to go about getting a second opinion would be gratefully recieved.
    even if we have to go private and pay, i think mum deserves at least the chance of a second opinion
    thanks
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Jan 23, 2007
    Last edited: Jan 23, 2007
    Hi Donna

    Could you not ask your doctor to do a referral for another Brain scan?

    Alternatively, just go into another doctor in your area ask them how to go about it, I am guessing hear hopefully someone may no better then me.

    Or may be your have to go privet if you can afford it, how about saying to your doctor you’re not happy in how they have diagnosed your mother and want to no if he could recommend a privet doctor , so you could get a second opinion, you never no if may do the referral.

    I ask the internet "how do I get a 2nd opinion on the NHS " and found this for you xx hope its of some help

    http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=910
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Dear Donna , It must be really upsetting to see your mother in that state with staff, apparently, doing nothing to help her.
    I`m sure your GP would refer you for a second opinion on the NHS if you`re so worried. I would try that line first and if he didn`t think it would help, say you are willing to go privately. No GP can refuse a private referral.
    We took my mother, privately, to a neurologist. His own mother had had Alz. He advised against further tests, saying they were very upsetting and an ordeal for the patient. As far as he was concerned, she could have had Alz., definitely had lost her insight and cognitive awareness and there would be no cure.
    I suppose certain drugs could cause further symptoms, but that in itself is mainly trial and error.
    I hope you manage to get some better treatment for her, as I know how heartbreaking it is. All the best, love Sylvia x
     
  4. alex

    alex Registered User

    Apr 10, 2006
    1,665
    #4 alex, Jan 23, 2007
    Last edited: Jan 24, 2007
    Hiya Donna

    Everyone is entitled to a second opinion, if your not entirely satisfied with the first............go back to the gp and ask..........if he refuses on the grounds that he thinks the outcome for treatment and care would remain the same, then ask for a private referal............1st consultation is usually about £100, scans etc can start at about £400-1,000 depending on which scan she needs, but the consultant can and will provide a quote of the cost of investigations..............all consultants have minimum and maximum prices laid down by the bma.

    Hope you get sorted
    Love Alex x
     
  5. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Donna.....this last year must have been so distressing for you and I'm sorry to hear you found mum in that state today.....
    Just want to send you a big hug
    Love Wendy xx
     
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Donna .... not on dementia related issues - but the experience of requesting a second opinion and even offering to pay privately for it has generally sent 'jitters' to the 'first consultant' once made known to re-evaluate ....

    Just a thought.....

    Hugest hugs to you, Karen, x
     
  7. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    thankyou all so much for your replies,
    i have a routine appt with my own doctor next week so i am going to ask her opinion (she used to be mums doctor also)
    weve been told by the ward manager that mum is no longer under the local gp's care and if anything goes wrong with mum when she's at home we have to take her back to the hospital for treatment which is why ive been a bit reluctant about, about getting a second opinion in the past my dad is a bit worried about stirring things up at this hospital and of course i couldnt do anything without his consent but i think even he can see something is not quite right about this whole situation,
    another example of the treatment she's getting is when we went to pick her up last week for a home visit, mum said she needed the toilet, i told the staff nurse on duty there and she said "oh she's only just been, the toilet run is not for another 15 mins she'll have to wait till then"
    apparently they take all patients to the toilet at set times of the day!! mum does wear pads but always tells us when she needs the loo.
    she even gets my dad up at night to go to the toilet,

    mum had a brain scan this time last year the doctor then told us there was no change in that one from the one they done just after her heart attack, yet just weeks later the consultant told us she had 12 months to live.
    i really am confused by it all i know mum is ill she may well have dementia but i think we owe her to at least get a proper diagnosis, it may not help the outcome but at least we can say we tried.
    thanks again all im really gratefull for all the input you all give me x
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    Dear Donna, Your mum does seem to have been treated shabbily. I read your post with dismay, and feel totally inadequate to be able to offer anything constuctive.
    I understand your dad not wanting to make a fuss, he`s probably afraid your mum will be treated even less sympathetically. I can say though that when I put in a formal complaint about treatment [or lack of it] to my mother in out-patients, she was treated with much more respect the second time around.
    I thought this toiletting at set times had gone out with the ark. It isn`t even done in nurseries now.
    I hope your GP will be able to help you. All the best, Sylvia x
     
  9. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi All
    I can not believe that toileting at set times exsists.
    If someone has to go, they have to go, doesn't matter what time it is?
    Am I being too naive, here?
    Does this really happen? I am appalled.
    Alfjess
     
  10. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Donna


    Aaaaarrrrggghhh!!!!
    This makes me so mad. I've seen this so many times while mums been in hospital.....and I was glad for mums sake she's now doubly incontinent.....so she didn't have to ask them......I know they're busy but surely, even if they have just been they might well need to go again!!!

    Love Wendy xx
     
  11. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Donna

    I was so distressed to read what is happening to your mum..........I agree, I thought this dreadful treatment of spending a penny to the clock went out with the art too.

    I'm a great believer in the power of the pen...........it gives you the opportunity to vent your frustration, then to rewrite unemotionally stating the facts......

    I think in the first instance I would write to the Consultant who gave the original 'diagnosis' requesting a reevaluation, and your reasons for this (copy all your letters to mums GP, if indeed she has been taken off the GP's list, then contact the LHB asking that she be allocated a GP).

    By writing letters you then have in writing their reply, they are duty bound to reply to you.

    If reevaluation is denied, then ask for a second opinion, or referral to another Consultant on the gounds you are not satisfied.... if you disagree with the reevaluation, again ask for a second opinion.............all this can be done through the original Consultant..........quite honestly they cannot refuse.

    On the care of your mum..............I would again write a letter to the Nurse Manager, or General Manager of the hospital stating clearly your concerns about the standard of care.........again this should extract a written reply.........if it is not satisfactory...........or you see no improvement............request that mum is moved.... God love her, she is entitled to the best standard of care available, anything short of this is a disgrace. Bottom line is though, sadly I would suggest that the standard of care stems from management culture..........so you may not get very far with this one, but worth a try, and worth giving them the opportunity to put things right.

    Good luck, and please let us know how you get on.

    Love
    Cate xx
     
  12. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    thanks so much for all your replies,

    I was starting to think i was being a bit overprotective of mum, and as she's only just moved to this hospital we didnt really want to make a fuss, i know dad is getting really frustrated when he visits he's always asking questions i think that's the reason why were on our third hospital in a year:D .
    every day this week she's been crying when dads visited when he's asked why she's like that all the time they told him she's only like that when he visits as he reminds her of home!!
    so what do we do stop visiting? somehow i dont think thats going to be an option.
    thankyou so much again for all the good advice, i'll keep you all updated on what our next step will be.
    xxxx
     
  13. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    toileting

    My husband has been put in pads as he has become immobile. But i see him wanting to pass water he fidgets as a child would. When i asked for him to be toileted the carers, whom were in a huddle said he has a pad on i replied that i believed that he also still had control of his bladder. He was showing signs of stress. When i did some nursing in the bad old days in a mental hospital there was a routine in place to take the patients to the toilet before and after meals. Could it be now pads are used it is the easy way out. \Back in the 60s there were no pads,:eek:

    Cynron x x
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I find this issue of pads/toileting quite horrifying. John is now 90% continent again, but wears pads at night. He also fidgets when he needs to pass water, and this wakes me during the night, so that I can guide him to the toilet.

    If he was in a NH, presumably he would just be left to wet himself, and would soon become totally incontinent. He's fully mobile, but can't ask to go to the toilet, and I think sometimes doesn't realise the source of his discomfort.

    I guess this is another reason to delay respite as long as possible.
     
  15. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    cant ask

    yes Hazel my husband cannot ask for the toilet and when he was at home i would take him when i saw the signs.

    Cynron x x
     
  16. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    Its a sad fact ,most patents that go into hospital for assesment or respite come home incontinant ,and they do take them at allotted times , it makes me mad when i think of the 100% care and attention we give our loved ones , and pick up on every signal of needs , for one or two weeks in care it is all lost , this is especialy true of those that can not ask for the toilet ,but are still aware of there needs ,this is heartbreaking,and catch 22 for those carers who desperatly need this break to enable them to gather strenght to carry on ,but when there loved ones are back home the task has become that much harder.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,850
    Kent
    This is the problem isn`t it.
    My husband isn`t at that stage yet, but I can see by the previous posts from Hazel and Cynron, how intimate knowledge enables the best care and the least misunderstanding. How can we expect strangers, with the best will in the world, to be able to give the same care.
    This is one of the reasons we delay respite and residential care until it is absolutely necessary. Sylvia x
     
  18. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    One elderly lady on mums ward was 93(not AD) She often used to ask for the toilet /bed pan and once she was left for 10 minutes....she was getting distressed.......I heard the nurse tell her"you've got a pad on you know!!" I was really upset for her......i think she felt degraded. I was sorry to discover she died yesterday........
     
  19. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    My goodness all this I want to scream....................if the staff were run off their feet, maybe, just maybe I could understand this dreadful attitude..........but sorry I feel it is totally crazy that patients are put in b.......y pads to make their lives easier............

    I dont have an answer to this problem..........but lets face it, this is b........y basic nursing care.............its a very long time since I was actually nursing..........but good grief the Ward Sister would have our hide if we didnt pdq get to know the individual patients needs, and yes, that includes those folk who are unable to obviously make their needs known....Aghhhhhhhhh I feel so dam cross.

    Sorry for the rant, it just makes my blood boil


    Love to all
    Cate
     
  20. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Cate
    Don't apologise!!!
    My eyes have certainly been opened since mums been in hospital:eek:
    Love Wendy xx
     
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