How to Get a Diagnosis for Dad?

Discussion in 'I care for a person with dementia' started by Long-Suffering, Aug 8, 2015.

  1. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi everyone,

    As I mentioned earlier on another thread, dad has had dementia for at least 2 years, we still do not have a diagnosis, and he hasn't received any treatment. I've been mailing the community carer for 8 months in total about this. (I live abroad). Today I got a mail from her which finally gives me the details of the care co-ordinator at my parent's surgery. The Com. Carer says that she has passed on my details to the care co. and if he doesn't contact me within a week, I should get in touch with him. Fingers crossed that he does contact me and I don't end up having to mail him for months too.

    I need some advice. My plan is to first ask him if my dad has had any kind of assessment and if not request for him to be referred to a memory clinic. Is that the right way to go about it?

    Thanks,

    LS
     
  2. Bod

    Bod Registered User

    Aug 30, 2013
    1,182
    What does your father's GP say?
    Do you have Power of Attorney? Without it they may not talk to you.

    Bod
     
  3. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Bod,

    Yes, I have power of attorney. I don't know what his GP says, that's the whole point. As I live abroad, I have been trying to get in touch with him through various channels for 8 months. The Community Carer has been my main point of contact and has been promising to liaise for these 8 months. I mail her and wait, she eventually replies and says she'll do it soon. So I wait some more, hear nothing, mail her again... it's been going on for 8 months. In the end, after me really pushing it and mailing her every 7 days, she seems to have got ****ed off with me. She has basically told me that she doesn't have the opportunity, so she has sent me the postal address and phone number of the surgery and left me to do it myself if the care co-ordinator doesn't respond to me. 8 months wasted. I could have done that myself 8 months ago. I blame myself for trusting her - she said "Don't worry, leave it all to me". I think what ****ed her off was I said in my last mail that I thought my dad would be dead before he ever got a diagnosis.

    I'd like to know if this is a usual occurrence - have other people's GPs, whilst acknowledging that a person suffers from dementia, made no attempt to diagnose the type or provide any treatment? I would have thought the patient would be automatically referred to a specialist, but in my dad's case it seems like the GP has just said yes he has dementia, but has then not followed up on it at all. No diagnosis. No treatment.

    LS
     
  4. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    Try and locate the local mental health trust, then find out what their procedures are following a GP referral.

    I'm not familiar with Community Carers or their responsibilities. More importantly, has she had any dementia training? My concern is the issue of patient confidentiality.

    The GP needs to have a copy of the POA. Send it to the Practice Manager by recorded delivery, then you'll know they have received it. You can get their name from the practice website, assuming they have one.

    I think a trip to the UK and a meeting with the GP may be the only way you will get the information you want. Eight months is a long time to wait.
     
  5. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Spiro,

    Thanks for the reply.

    A trip to the UK is out of the question due to my own poor health, I'm afraid.

    The Community Carer is the person who is responsible for organising and sending out carers to people in the community, so she was sending out people to help my mum with my dad's care for several months last year.

    My mum isn't pushing the GP to do anything about my dad's dementia. For various reasons, she is doing the exact opposite, so he hasn't had a diagnosis or treatment.

    Thanks,

    LS
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    Have you tried speaking to the GP over the phone? As you have POA the GP may well be happy to speak to you. In fact, my mums GP was happy to speak to me over the phone even without POA (mum refused to sign one)

    You may find that you are not being told the whole truth. In mums case she had been referred to the memory clinic, but had not attended.
     
  7. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Canary,

    The GP is notoriously difficult to get hold of. Even when I was over there a few months back, it was the same. I think he works at several different surgeries and you need an appointment to see him. The last time I was well enough to go and see them, a year ago, mum would never consent to allowing me to take dad to the GP. At that point, she wanted total control over dad's health. I think there is a good chance that I am not being told the whole truth. I know that as far as mum is concerned, she thinks she knows better what's best for dad than the doctors, so she is keen to keep him away from them. Also, she doesn't want anyone interfering in their lives.

    Mum had a big argument with a nurse who went round to see them a few months back. I am now putting 2 and 2 together and guessing that this was perhaps someone from the memory clinic trying to assess dad and my mum became angry and told her to leave. This is my hunch now. I want to check it with the doctor.

    The trouble is both mum and me have power of attorney over dad, and our views on his treatment differ dramatically.

    LS
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    Arnt they all.
    You may have to make a nuisance of your self (I dont mean rude, just insistent) Ask the receptionist when the best time to phone is. Leave messages with the GPs secretary. Keep trying. Eventually they will get fed up of you keep phoning and the GP will probably contact you just to shut you up!
     
  9. JayGun

    JayGun Registered User

    Jun 24, 2013
    291
    Ask for a booked telephone appointment with the GP in your dad's name but to your phone number. All GPs do phone appointments nowadays. If the GP can't tell you much then tell the GP all your concerns, bandy about the magic words "vulnerable adult" and "duty of care" and see if that shakes anything out of the tree.

    I'm finding it quite concerning that a GP can be unobtainable for eight months. How does that work for their patients?
     
  10. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    This was what I ended up doing with the Community Carer and she responded by handing the responsibility over to me. The impression I get is that the care service and the NHS are so overloaded in my area that the lowest priority patients are not dealt with. Sadly we all know dementia patients are in that category.

    Anyway, I'll give it a go. It may turn out that the GP is helpful and the care side were the ones who couldn't get their act together.

    LS
     
  11. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Thanks, Jaygun.

    Oh, my parent's surgery is so overwhelmed with patients that you have to be almost dead to get an appointment. Three years ago it was the same. I had an ear infection. It started on a Tuesday and I was due to fly back home on the Friday. I phoned the surgery as soon as they opened, 7:30 am, on Weds and Thurs only to be told that the day was fully booked and I'd have to do the same at 7:30 the next day. They wouldn't take bookings a day in advance. I ended up having to come back on the plane still with the infection. Once back, I walked straight into my local clinic with no appointment, saw the doctor and had my treatment with just a wait of ten minutes. The UK health service is dire. You don't realise till you live abroad. In another case, I found a breast lump one evening. Next day went to my clinic with no appointment. Saw the doc after a ten-minute wait. Got a letter of referral to a specialist and the receptionist phoned the specialist to book my appointment. I got on the train to the specialist, saw him, had the tests and got the results immediately. So It took me from 9am to 2pm the same day to discover I did not have breast cancer. And this was not at a private clinic - this is their equivalent of the NHS in the place I now live.

    Anyway, I am rambling off topic.

    I will try ringing up tomorrow.

    LS
     
  12. Spiro

    Spiro Registered User

    Mar 11, 2012
    522
    #12 Spiro, Aug 9, 2015
    Last edited: Aug 9, 2015
    Try a different approach - bypass the GP. You have POA, that is the important fact.

    Contact the local Community Mental Health Trust and say that you want to know when your Dad's next appointment is - you have his DOB and address. It may be that he has been discharged. Make sure you get his hospital number and the name of his consultant. Phone numbers and addresses should be on the CMHT's website.

    Then phone the consultant's secretary, explaining that you have POA. Ask if they can confirm that he has been visited by a CPN and get as much info as you can.

    This is the fastest way of finding out if your Dad has been referred. Depending on the outcome, you can then write to the consultant or the GP, including your mobile no. and a copy of the POA, which needs to be in his GP and his CMHT notes (if they exist).

    I know you live abroad, but many hospitals do not allow staff to communicate with patients electronically - Data Protection and patient confidentiality.
     
  13. JayGun

    JayGun Registered User

    Jun 24, 2013
    291
    Maybe they could move to another doctor's surgery then?

    I must say that my mother in law's surgery, my own surgery, my parents' surgery and my grandparent's doctor's surgery are not at all like that. You can always get an appointment the same day if you really need it, and the next day if it can wait a day, and telephone appointments and house calls are available every day.
     
  14. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Spiro,

    Thanks very much. I hadn't even heard of the CMHT. I still have so much to learn. I'll try following the steps you suggest.

    About the e-mail, I am a cynical type, and I often wonder if they avoid using it because they don't want written records of what they've promised in case they can't fulfill those promises.

    LS
     
  15. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Jaygun,

    Good suggestion, but mum would never agree to moving to a new surgery. She has this kind of OCD thing about change regarding everything. She refuses to accept it. I have to do things like cut and paste vacuum cleaner bags to fit her old Hoover from the 80s because she says the stress of changing to a new one would be too much for her! Besides, she worships her doctor. He's about the only person she doesn't criticise.

    I think it must depend on where you live. Mum and dad live in a very poor area of town. Resources are limited in every sector.

    LS
     
  16. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    My cousin messaged me today to say he was popping in to see my mum and dad on his way home from his holidays. He's a retired psychiatrist, so I am going to pick his brains about what he thinks about dad's condition. And mum's too. I am more and more convinced that the hospital doctor was right and she is suffering from dementia too. I am just so used to her having other mental illness that I guess if she does have dementia it hasn't been so obvious as in dad. I've been noticing things recently. The solicitor went round on Thursday for her to sign the LPA and afterwards when I spoke to her she couldn't remember the crucial Section 5 part about maintaining life support even though I'd already explained it to her twice so that she wouldn't be surprised. She claimed there was nothing like that on the form. This has me really worried now. Having one parent with dementia is bad enough, but 2. Dear god. I may need more pills from the shrink. Just dope me up completely.

    LS
     
  17. Janjorie

    Janjorie Registered User

    Feb 2, 2014
    4
    Hertfordshire
    Over a year ago my mother's GP made a note on my mother's records that she has dementia, without referring her to a Memory Clinic. At the time we all accepted that she would find a Hospital appointment very stressful and, being over 90 years of age, any medication prescribed would be unlikely to help. I now wish I had requested a hospital Consultant diagnosis as we have recently been visiting prospective Care Homes and they all ask for an official (ie not just GP) diagnosis.

    It sounds possible that the same situation has occurred with your mum and dad : both unwilling to accept and attend Memory Clinic appointments.

    J
     
  18. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Hi Janjorie,

    It's mum that is the problem: dad has accepted his unofficial diagnosis 100% (well he didn't have a choice because mum reminds him at regular intervals "You've got dementia!" and then adds whatever way his dementia is inconveniencing her at that particular moment). No, it's mum. I think she is keen to keep the memory clinic/psychiatrists away from them because she is worried about what they might say about HER state of mind, not dad's. I have been slow on the uptake on this one. I should have realised. She was fine with the nurse who went round to see dad until the nurse started talking about mum's mental health. That was when mum lost it and kicked her out. I suspect that that nurse had been sent by the memory clinic or equivalent and mum put a stop to dad getting a diagnosis. I'm now looking to confirm this. Mum told me that the nurse had said to her "withholding information is illegal", but not in what context.

    LS
     
  19. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    425
    Update

    Well, surprise surprise, the care co-ordinator who was supposed to get in touch with me 2 or 3 weeks ago hasn't. Going on past experience, I wasn't expecting him too. However, there have been some developments.

    Firstly, my retired psychiatrist cousin went to see them and sent me a note saying they were both pleased to see him and looked well. He said dad was very quiet but seemed healthy. He also said mum seemed to be doing a good job of looking after him. That was a relief to know. He also discussed having carers in again, and mum said she couldn't cope with the stress of that, which my cousin understood.

    The next thing was that I asked mum again about what happened exactly when that nurse went round and upset her. Before I asked her, I had been thinking about what we'd talked about on TP, and come to the conclusion that this nurse might well have been sent by the GP to assess dad's dementia. It turns out this hunch was right. In the course of the conversation it became clear that this nurse was sent by the surgery to talk to mum and dad about dad's dementia, and mum told me she had actually said "The next step is to find out exactly what kind of dementia your husband has". She also said something about care possibilities either daily help or residential in a CH. It was when she got on to the topic of mum's mental history that mum lost it and told her to leave.

    The problem here is that this information is not getting passed on to me. Clearly I have been trusting mum too much and believing what she tells me. It's clear now she has her own agenda for controlling my access to information. I don't understand why the nurse didn't tell the Community Carer about this and then the CC could have told me. Here I am thinking that the GP is doing nothing for dad's dementia, when they have been trying and all the time it's her that's been blocking them.

    Speaking to mum today, dad has another chest infection and the doctor went to see them. The doctor encouraged my mum yet again to accept help from carers during the day. Once again she refused. So they are trying their best to get her to listen. I think they are concerned that she will crack up.

    I haven't been in a fit state mentally this week to do anything, but when I am feeling a bit better I am going to ring the GP.

    LS
     
  20. Bod

    Bod Registered User

    Aug 30, 2013
    1,182
    Update

    Yes you are right, you do need to talk to the GP direct.
    Has your mother ever had a "daily/weekly" help with housework or gardening either now or in the past?
    This may be a way of reintroducing help.
    If you don't already have Power of Attorney, now would be a good time to try and get it, for both parents, both Health & welfare, and Financial.

    Bod
     

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