1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    New on here. My husband has a diagnosis of mild Alzheimers (initially diagnosed in 2014)and has signed a letter to our GP stating that he gives permission for me to be able to speak to the doctor re any medical issue of his.

    He went for a consultant check back in 2016 where a Spect scan was ordered to double check his original diagnosis. During this apppointment I was able to speak separately to the consultant to explain the true situation at home. My OH always says he just has a bit of difficulty finding the right word but that’s all - he can present extremely well.

    Subsequently a letter was sent to him outlining what had been said in the appointment including things which I had told the specialist alone and in confidence. I complained strongly and I insisted that this mustn’t happen again.

    Recently I had cause to phone Admiral nurses re ongoing changes in my OH’s behaviour and confusion.. I was put onto someone in the MHU who said they’d arrange for our GP to call him in for a blood test to rule out any infections as a potential cause of his slight deterioration and then take it from there. A few days later my husband received a letter marked private and confidential. He gave it to me to open and read it over my shoulder. It was a copy of a letter sent to our GP from the MHU and they spoke about OH having a blood test to rule out an infection as a possible cause ‘..of Mr X’s aggressive presentation..’. OH was extremely unhappy and angry and wanted to know who said he was aggressive etc etc.

    Does anyone on here know where I stand in terms of confidentiality? As it is, I feel totally on my own. If I need to speak to anyone about how my husband is in the future, I feel I can’t trust that whatever I say won’t be reported back to him. I just feel so alone and sort of ‘betrayed’ if that doesn’t sound too dramatic. Sorry for such a long post.
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    714
    Male
    North West
    I'm not sure how your MHU system works but letters generally written contain information for the GP that isn't contained in the letter for the patient. It maybe that who wrote the letter hadn't completed electronically the forms correctly, hence showing comments that were meant for the GP only -this maybe what has happened.

    Might be a good idea to stress what has happened on this occasion and raise it next time so any letters sent to your husband are sensitively written while containing relevant information.

    I would speak to the MHU just to highlight the difficulty its caused you and see if they can advise anything further.
     
  3. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thanks for your reply, Palerider. I’ve spoken to the MHU on both occasions they’ve done this, on the first occasion this happened, in their letter to my husband they even referred to aspects of his behaviour which other family members had noticed too. (suggestive inappropriate remarks, anger when disagreed with etc). That went down very well as you can imagine!

    They seem unable to get their act together so in the meantime I have to basically say nothing confidential to them it seems. Speaking to them is useless so perhaps I should put it in writing and see if that gets their attention.

    Thanks again.
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    714
    Male
    North West
    Mmm not great when your poor husband has no insight to read that about himself. As always complain, its the only way things get taken seriously -unfortunately
     
  5. Moggymad

    Moggymad Registered User

    May 12, 2017
    383
    Female
    @hillyjay due to the sensitivity of the information you provide at these appointments could you ask not to receive a copy? When i attended appointments with mum's haematology consultant she asked whether or not we wanted to receive a copy.
     
  6. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thanks Moggymad, I hadn’t thought about that. Nobody has ever asked me if we wanted a copy of anything. These things just get sent as standard procedure I think - you know, letter sent to GP, copy sent to patient, no thought involved.
     
  7. Palerider

    Palerider Registered User

    Aug 9, 2015
    714
    Male
    North West
    Just to point out the copy isn't 'yours' its your husbands for his benefit and also if he needs relevant information for further management with other parties. It maybe that not recieving information seems better, but if things deteriorate quickly then you wouldn't have a copy of relevant and appropriate information to hand. There is no right or wrong way here, but you do need to weigh up which might be the best approach.
     
  8. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    I see what you’re saying but my point is that they include in his letter information given to them in confidence by me.
     
  9. silversea2020

    silversea2020 Registered User

    May 12, 2019
    81
    I think, whether rightly or wrongly, if you’re discussing or having an ‘opinion’, ask in writing and the reasons why to the Doctor/Consultant who your OH is under the care of not to mention it in any future letters to your OH - copying in your OH what’s been said may not be in his interests as you’ve already made plain - maybe speak with the doctors/consultants secretary who I’m sure can help with this and the best way to help you all ...
     
  10. Lawson58

    Lawson58 Registered User

    This all sounds very unprofessional to me. If I were you I would escalate my complaints and put them in writing. You can either hand letters over personally or send them requiring a signature. The Mental Health Unit must have a Director or something similar and I would send a copy of your complaints to them.

    I have just re read the letter sent to my husband after his second round of testing and there is no mention of anything I said to the social worker in our hour long discussion. The letter dealt with his cognitive abilities and how they have changed since his original testing and recommendations. It was quite friendly in tone and obviously great care had gone into what was said and how it was said.

    And when it arrived, OH handed it to me and refused to read it!
     
  11. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Thank you so much everyone who replied. You’ve made me feel that I’m not quite so alone in this.

    You’ve made me think that the best way to hopefully avoid any more repetition of this is to put it in writing since their verbal promises don’t seem to have any effect. I’ll try and sort something this weekend - probably address it to the manager of the MHU.

    Thanks again!
     
  12. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Quite so, Lawson, that was exactly how they acted in the neurology department in the area where we used to live. Carefully worded reports were sent with details of the cognitive ability testing results. Think I got lulled into a false sense of security and expected everyone elsewhere to do the same.
    My husband refuses to read those letters, hands them to me and then proceeds to peer over my shoulder!
     
  13. Dosey

    Dosey Registered User

    Nov 27, 2017
    96
    Hi Hillyjay
    I am totally shocked at the way this has been handled.
    I communicated with GP, dementia doctor, other consultants at hospital clinics on behave of my husband for 7 years he has early onset Alzheimer's.
    We attended the dementia clinic every 3 months and had a CPN who visited regularly and I could call her with any concerns.
    When we attended the dementia clinic the doctor would get the nurse to take my husband away for a drink so I could give her an honest update without him hearing it and getting upset.
    Under no circumstances did any professionals repeat or send out any information that would cause conflict at home.
    You need to make your complaint in writing and make sure you get a response and acceptable outcome.
    This illness is hard enough for PWD and carers without unnecessary pain.
    Rose x
     
  14. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    Hi, I don’t know where you live but the system is totally different to where we are. As I said in my other post to Lawson, that is exactly how things were in the area where we used to live.

    Here, after we registered with the new surgery in 2016, he was seen once by a CPN who told us that he had the best score she’d come across and she wasn’t needed any more here. My husband happily told her all about how he’d got those cognitive ability deterioration reports because he’d not felt relaxed with the last neuropsychologist and so hadn’t done well plus he’d been tired at the time as well. She believed it.

    We were referred by the new GP to a neurologist who recommended SPECT scan to confirm the initial diagnosis. Went back for the results and the first neuro had moved on so saw a different one. Both of them asked me directly in front of my husband what deterioration I’d noticed in him. He’s got mild dementia and is perfectly capable of taking all this in. I asked to speak privately to them - my husband was happy for me to do this.

    Since then, I’ve spoken to an Admiral Nurse by phone a couple of times and once had an interview alone with her at the MHU shortly after my OH was referred to the MHU. All of that was in 2016. Since then, nothing whatsoever, no contact, no checks, nothing. Until I made the mistake of ringing them to ask about various changes in his behaviour. Which was what started all this off! You learn by your mistakes.

    Thanks so much for your support. x
     
  15. Dosey

    Dosey Registered User

    Nov 27, 2017
    96
    I live n Glasgow Scotland. The care and support we had for 7 years was fantastic. The CPN was constantly looking for activities, groups, befrienders etc and made lots of referrals. Unfortunately my husband would not accept any of these .
    He has been in a care home now since 2nd April (10 weeks). Even the process of engaging Social Work and social worker finding a placement was straight forward and quick.
    I read on here the many lack of services and support people are getting.
    It is a disgrace that so many carers are being left until there is a crisis or carer breakdown .
    Hopefully you will get answers. Keep posting here, lots of help, comfort and advice from all the lovely carers who understand.
    Rose x
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    714
    Male
    North West
    You haven't made any mistakes at all, the system has let you down and put you in an awkward situation. I hope you find a way of sorting it out for your peace of mind and your husbands
     
  17. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
  18. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,655
    Female
    #18 Sirena, Jun 15, 2019
    Last edited: Jun 15, 2019
    Would it be possible to ask for letters to be addressed to you, rather than to him? Obviously you would have to stop him looking over your shoulder,

    I asked for all medical correspondence to be sent to me, rather than to my mother - it would have been pointless as she would have binned the letters. I had the same situation as you, my mother gave permission for the docs to speak to me and they had no problem with speaking and writing to me instead of her (I do not have H&W LPA).
     
  19. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    That sounds so easy! Thing is, that’s exactly what I did at the first appointment. All correspondence to be sent to me. It obviously fell on deaf ears or didn’t get noted down. I must start trying to stop him reading over my shoulder though, you’re right!
     
  20. hillyjay

    hillyjay Registered User

    Jun 14, 2019
    56
    I’m so pleased to hear you’ve had such a positive experience in terms of care and support. Hope your husband is settling down well now.
     

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