1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Had a letter from consultant 2 weeks ago telling us that my OH has spinal stenosis and has been transferred to Kings in London for op! Today I received letter from same consultant telling me whilst he has spinal stenosis it's all fine and not effecting his leg?????? What is going on ??? Dates he had his MRI do not match on this letter as they said it was taken in jan but he had it done in feb???? So confused now . Really dislike the NHS :((((((


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  2. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Just looked at both letters again how can one say op and the other it's all good when the said consultant phoned me after first letter and explained how John needs this op???? Maybe kings decided against the op with regard to dementia and anaesthetic but they should say that then surely?????


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  3. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,736
    North East Lincs
    You just couldn't make it up. I hope you are able to make sense of it all soon and John gets the treatment he needs. Reminds me of a Consultant who insisted I had met him before and was following his treatment regime. It took me a while to convince him he was wrong and then he realised he had got the wrong notes: same name different G L.
     
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,938
    Female
    Dundee
    Oh no. It has to be a weekend when this kind of thing happens. I hope you get it sorted out on Monday but sorry you're facing another battle.
     
  5. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Tbh don't know what to think???? Can't do anything till Monday so will try not to worry about it. Mind our hospitals are on special measures!!!!


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  6. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    Without wanting to alarm you, I'd double check everything.
    When I accessed my husband's hospital records for my application for CHC funding, I found letters referring to a completely different person in his file. Not even the same Christian nor surname.
    As it was for years ago, it had no relevance today for my husband.
    However I'd be cautious as the about turn is one thing and could be due to further test results but allied to the discrepancy regarding dates is a bit worrying though of course it could be a typing error.
    If the consultant has changed his mind, it makes his recommendation of transferring your husband for an operation a bit rash.

    Having said that, I have had copies of letters sent to my GP from the Eye consultant with completely different drugs and treatment timing for my glaucoma mentioned!
     
  7. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Thank you Saffie :) somewhere something is not right :( NHS no are the same and name and address is correct! Just wish they would be honest with us xxxx


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  8. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Sorry you have this worry and confusion on top of an already very worrying situation sweetie. Like Izzy said, even worse for it to be on the weekend. Hope you can try not to let it get you down too much. Love, Es
    xxxxxxxxxxxxxxxxxxxxxxxx
     
  9. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    What happened to all our records being put on a database? This was supposed to cover any mistakes like this. It's all got too big and too confusing, and that's for us who haven't got dementia!

    The mind boggles, and I truly hope you can eventually make sense of it all, Heike.

    What a worry :(
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    Chugg, I think records on a data base will lead to more instances of mistaken id. Then there's the opposite, we had to go to an A&E in next county last year and the receptionist couldn't get the computer to accept his name. It turned out that there was another guy already on the computer with the same name and dob, which when you're 81 must be pretty rare. Address was different, of course. Only got there in the end as OH has another Christian name.
    On the other hand the gps notes on an emergency admission said he had asthma. No he hasn't. His mother did though, the note on OH record said familial history of asthma, which is completely different!
    Records, like computers, are only as good as the person who inputs data.

    Chick, I expect you to be on the phone to the consultants secretary 1st thing Monday morning!
     
  11. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Oh I definitely will Spamar but I should not have to :( it's more like he has got dementia and we won't do anything which is so wrong as he is in so much pain already which makes his dementia worse . Will let you know Monday :( xx


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  12. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    There is absolutely no reason why anybody should be in pain ( but they are). There is, or used to be, a pain clinic for people with severe pain. It may be that dementia precludes some of the treatments, but there must be something!
     
  13. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello Spamar l agree with you once you mention dementia or Alzheimers, you don't get the treatment, my hubby has Gluacoma and Macular disease, they were going to start treatment 2yrs ago, but when they new he had Alzheimers, l was told they would defer it for one year, the same the next year, if he goes blind l will sue the NHS!!!!!
     
  14. truth24

    truth24 Registered User

    Oct 13, 2013
    5,725
    North Somerset
    Have to say they continued treating Fred's macular degeneration right up and into his transfer to his CH in July. Only stopped when it became impossible for me to get him to get him to leave the home. The staff at the Eye Hospital were marvellous. All butterfly trained.

    So sorry to read of YOUR problems, chick, and hope it gets sorted very soon. It's awful that John should be left in pain.

    Sent from my GT-N5110
     
  15. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    It's exactly how I feel, the spinal stenosis is cutting the nerves and spinal cord off so he has severe pain in his shoulder and can't move his neck very well either. He has still capacity and would like the op while he is still fairly good! Once he looses his capacity this op can't be done!! John knows of the risk but wants to take it so they should listen to him ! He is only 65 years old :( I don't know for sure what's going on until I ring on Monday !


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  16. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Just phone consultant , spoke with secretary . She does not know what it's all about????? Said thank you for bringing it to our attention??? It has been send to kings for op but haven't received anything back from kings yet as it takes a while! She will speak with consultant to get back to me!!!!! No wonder I have no faith in our NHS !!!!!


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  17. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,343
    Merseyside
    That's ridiculous Chick.
    You have enough on your plate without their incompetence.
     
  18. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    Oh I know Cat but I am feeling optimistic at least it looks like John will get the operation he so needs! See I am a little positive again :) now for him to get better real soon and I will be back to normal, whatever that means in the land of dementia ;) much love to you xxxx


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  19. jock01

    jock01 Registered User

    Mar 19, 2015
    7
    Good luck with this problem Chick, keep at them and get the right answers.

    I just wonder how many of us are having problems with getting proper/continuing medical treatment. My John was told two years ago that he was needing cardiac stents as his heart condition was worsening, but despite seeing the same surgeons has never had them. Other treatment seems to have been put on the back burner.
     
  20. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,282
    Female
    near Folkestone
    That's so wrong jock :( they should get the treatment they so obviously need !!! I think one hand does not know what the other is doing!!! Hope you have a good day :) x


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