memory clinic appointment

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lulu, Oct 21, 2005.

  1. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Mum had her 6 month check up at the memory clinic recently. The word 'efficient' doesn't spring to mind when we attend, although everyone is very kind. Generally, we leave the clinic with still unanswered questions and so prior to this appointment, as I was loath to leave my queries another 6 months, I wrote a letter to the Dr to describe how Mum was, and to ask questions which I don't feel comfortable asking with Mum present. I also asked to be interviewed separately to ptrotect Mum from listening to what I see as telling tales about her.

    We were all called in together (had she got my letter then, I wondered?) and commenced the consultaion ..first asking Mum various things, then asking us -the very thing I didn't want! After a lot of awkwardness, I had to answer these questions until my husband butted in and asked if she had received my letter. No. She continued with the questions, but then suddenly stopped and asked what my Mum's name was. She was momentarily thrown, and I could see on the notes that she had the wrong notes in front of her. At this stage, I think she should have owned up (these things happen, we are only human), but she carried on in what became a very harassed manner ....making her notes on a piece of paper by then, and not the notes she had already started.

    I asked what mum's MMSE score was this time (I felt there had been some sort of decline), and she seemed to pluck a number from mid-air, saying that she was slightly worse. The last time we attended and I asked what the score was, she asked me why I wanted to know, and was VERY reluctant to say. When I insisted, she seemed to make a wild guess. So if she didn't have an accurate score last time, how could she tell what it was this time, as no thorough test was done!

    So once again, we left with still unanswered questions, and a feeling that this appointment was a waste of time. I know the MMSE isn't too important, but I would like to know, more or less where Mum is in this disease. I think she's now bordering on the beginning of the moderate stage, but I just don't know. I would much prefer facts than to be left guessing....

    Sorry, but just had to tell someone.
     
  2. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Doesn't it drive you crazy? Because we know the NHS is pushed to the limits we go along with lousy service, but after all THEY are working for, and paid by, US. I did a few days working as a temp at my local NHS headquarters, and what a shambles it was.
    One man had to have all his e mails printed out before he could read them, the 'confidential' waste paper (at a time when there was a huge hoo hah locally about the working of the place) had to go into a wheelie bin out the back, marked 'confidential waste', that any enterprising hack could have arranged to take away in its entirety to do an expose (that should have an accent, but can't seem to do it). I had almost nothing to do having been brought in because the previous week had been busy, although their interpretation of the word was light years away from mine.
    When I eventually said to the fabulously rude woman in charge that there seemed no point in my being there, so would it be an idea not to come in tomorrow, she seemed amazed, and not the least concerned that she had been paying someone to do flog all, who was prepared to forego another day's pay so as not to go into that Hall of Horror.
    We are scared if we make a fuss, in case our card gets marked as a troublemaker, but the level of incompetence you encountered does sound worthy of at least a letter to the local powers that be expressing concern.
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    At one stage Jan was referred to a psychiatrist who chain smoked all through the two consultations we had... it was all part of the private health insurance gravy train.

    One of the visits he had the wrong notes in front of him. At a loss as to know what to do next he just turned to us and said "so how is your sex life then?".

    That's when I pulled the plug on seeing him.

    He died some months later [he was well advanced in age] so the fags probably got him at the end. Just before I might have done.
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    These mental health teams seem to be very good at losing notes.
    We have had the same problem.
    I said to him it is 7 years now ,he said I think it's longer,but I donn't have the notes!!!!!!!
    Norman

    Bruce
    perhaps it was the sex that killed that Psychiatrist?
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Nice one Norm!!
    Dear Lulu, did they call your Mum in by name? It must have made you hopping mad when the specialist tried to cover like that, I know it would me. Perhaps you could try another letter, asking for clarification on some of the points raised during the apraisal or something? Otherwise, I do hope the next one is better, it really isn't good enough is it. Love She. XX
     
  6. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Rosalind, yes, I wanted to write a letter but thought better of it (coward that I am). Mum will see this Dr again, and I didn't want to make life any more complicated than it alreday is. Although she said she hadn't got the letter, asking if I'd sent it to the correct address (!), toward the end of the interview I got the impression that it was all coming back to her .....it was a shambles. I did think of contacting the CPN whom we have met just once. This was shortly after diagnosis, when Mum was on both Aricept and an anti-depressant and she seemed to be on a high, unable to slow down, very giggly. I called the Clinic and the CPN was sent out. Firstly she went to the wrong address, but once here she asked Mum what she thought of her behaviour? Well Mum had no idea there was anything amiss with her behaviour ..and I couldn't believe she was asking her that! So I'm reluctant to speak to her again ...I don't know, but I feel we are very much alone.

    Bruce, that cheered me up as I had a mental picture of the chain-smoking consultant, and it's good that Norman has had similar experiences (not good really) because I thought it was just me.

    Sheila, yes, Mum was called in by name, and when I realised something was amiss, I saw that the notes in front of her had the same first name with a different surname. The Dr had become increasingly amazed at the apparent abilities Mum was showing, and kept saying, 'well done, well done'! .... which is when she checked on her name.

    Each time we have been, we have been made to feel as though we have been in the wrong place, or have arrived on the wrong day, as when the receptionist shows us in there is a lot of mutterings between them .....all very strange.

    I just wanted to get it off my chest, but I may well write yet. Thanks.
     
  7. daughter

    daughter Registered User

    Mar 16, 2005
    824
    #7 daughter, Oct 22, 2005
    Last edited: Oct 22, 2005
    Hi Lulu,

    You're certainly not alone. I should think that nearly everone of us has had some bad experience at the hands of an incompetent professional.

    "once here she asked Mum what she thought of her behaviour?"
    What a ridiculous thing to ask your Mum - or maybe the CPN had some hidden agenda that we're not privy to?! As for the Doctor - well I'd be inclined to let her off this once - after all, she may not have been the one who selected the wrong notes for your Mum in the first place - although she should have checked her name at the start of the interview. Maybe she was having a bad day. The good thing was that you were on the ball and realised the mistake. (Yes, I know it shouldn't be necessary).

    The problem is that where there is dis-organisation, not enough communication or outright errors, and people are busy covering up their mistakes, we are left to feel as if we've done something wrong. There are really good professional people out there, who seem to know exactly what to say to put us at ease, and to be honest with us, and then to set the wheels in motion. Let's hope you come across some soon and that your Mum's Doctor has a better day next time. :eek:
     
  8. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Lulu, have you established which of the various people you have been seeing is supposedly 'managing' your Mum's case? In our case, I have established that it is the CPN (who thankfully is good, but probably overburdened) and now know what I should pester her about, and I know that her reports do get back to our GP and to the consultant who sees my husband. I know that if I wanted to have a private session with the consultant, I could get the CPN to get that message across.

    I also make a point of sending e mails about any concerns to the CPN, who is no longer allowed to e mail back for 'reasons of confidentiality' which seems daft, but I have noticed that if I e mail her with specific concerns about my husband's condition it gets into his file.

    For years I was ricocheting around with no actual help, and not even knowing what help there was available, but over the past 8 months things have started falling into place, with Attendance allowance, Carers Allowance granted last week (and backdated - hooray!) and home care supplied when I am not here.

    Perhaps rather than writing a letter of complaint, you could write requesting guidance on whom to contact for what, the procedure on how to obtain a private session with the consultant, etc. If you happen to mention obliquely that a previous attempt to set this up did not seem effective, that puts on record that there has been a problem, without actual finger pointing, which could be useful if things do not improve. My technique when complaining about anything is to start along the 'I'm sure you will be as distressed as I was to learn that.... ' implying that the supplier is undoubtedly a deeply wonderful person anxious to meet my every need.
    Good luck
     
  9. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Hi Lulu

    So sorry to hear of the way things were handled.

    I too have taken my husband to the memory clinic this week and things are handled so differently. We do not have a CPN but a memory clinic nurses ( don't know what the difference is?)

    When we arrive we are greeted by two nurses and are taken to different rooms, husband for his assessment and me to see how I think things are progressing and also plenty of time to discuss any problems. This was when I was informed of things like POA and Attendance Allowance and then at this next appointment I was asked had these things been put in place and was there anything else they could help me with, so there are plenty of opportunities to discuss things privately.

    After this meeting we are brought together and on this occasion as there had been a change a review of medication was talked about and an increase in dosage decided on.

    This was followed up by a telephone call two days later to confirm our GP had been informed of the increase in medication and a new prescription arranged.

    Seems things vary a lot depending on where you live!

    Hope you get things sorted soon.

    Linda x :)
     
  10. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I know I'm not really alone since I found TP. This has just been gently niggling away in the background and I had to talk about it. I don't wish to complain or to make a fuss, just to know where we are with Mum. Through researching this disease, TP etc, I THINK I know where we are, but I just want someone to confirm it. Since diagnosis there has been no proper discussion. I have no idea who is managing Mum. It is accepted that I know everything already ... and it makes me feel as though there is no help for us.

    Sorry. had to say all this ..am really not a moaner. Thanks for being there.
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    We are very fortunate in this area to have a very good Mental Health team, but I have to request time to speak on my own, otherwise the appointment takes place with the two of us.

    I realise Lionel knows he is deteriating but I do not discuss this in front of him.
    I find the same with the home visits from the CPN. Again I always have to ask for time alone.

    My theory is that they (the powers that be) know that we are recitent to ask too many personal questions or complain too much in front of our loved ones.

    We can however keep asking for what we need, whether we get enough help is another matter. Take care of yourselves, Connie
     
  12. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    My theory is that they (the powers that be) know that we are reticent to ask too many personal questions or complain too much in front of our loved ones.

    I also have the feeling that they are busy, busy, will do what is asked but only if we ask... After Monique's visit to the neurologist we went to the GP for her blood test results (highish cholesterol - my cooking!) I asked for and was given a copy of the letter from the neurologist to the GP. Monique likes the GP (hates the neurologist). The next day I made an appointment for myself with the GP and when I got there asked all the questions and received all the answers that were not possible in front of Monique... Monique says she has a minor memory problem (don't think she really believes that but it is her way of coping.)

    He warned me Monique is deteriorating fast and that I should start getting her used to the idea of having strangers in the house. He has given me letters to take to social security on Monday - Thinks I may be able to have someone come in and help with housework a couple of hours a week and another 'carer' come in up to 8 hours in a week to be with Monique to give me the opportunity to get out of the house......... I have told Monique that the Doctor wants me to have help with the cleaning the bath because of my bad back and if the 'carer' is forthcoming then I will introduce her as a 'new friend'... (Monique would say she does the house work and helps with the cooking!!!! and she is perfectly capable thank you!!) Maybe I jumping the gun and the SS will not actually do/provide all this but... The GP also told me to make the next neurologist appointment with another (a man - Monique prefers men!) at the same neurology practice - he says this is no problem and the way to go.... I feel lots more optimistic to-day.... Wonder what Monday will bring!

    I too have come to the conclusion that 'stimulation' is sometimes what we think is useful and not our spouse... Monique likes a glass or two of wine - cigarettes - the occasional visit to a cafe - I think visits from friends - relatives are enjoyed - not the anticipation though, of the visit - We live in town so the occasional sortie to look at the shops but more than that is challenging rather than stimulating - I think......

    Sorry its so bad for you at the moment Connie

    Michael
     
  13. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I have collected Mum's mail this morning and a letter has come from the Clinic informing her that not only have they changed her next appt date/time (something which seems to happen all the time), but the name of the Dr we shall see has also changed again. There seems to be no continuity ....
    As I say, I don't wish to complain as such, just to get answers to all my queries. I now feel that I should write to ask why we are seeing someone else yet again, and to ask who is managing Mum's case. Does this sound reasonable to you?
    Being as I was the one who 'forced' Mum to see her GP in the first place about her memory problems, I feel responsible for making sure everything possible is done for her.
     
  14. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    It would certainly be reasonable to ask who is managing your mum's case, and to whom you should direct all the numerous questions you have, such as why a different doctor (although after your experience with the last, this could be a good thing - perhaps the last one is so embarrassed she has shifted the case?) and how do you get to speak to the consultant privately without embarrassing your mum.

    That couldn't be seen as stirring - and I would be inclined to c.c. it to as many people in the loop you think fit - CPN, GP, etc, saying you are not sure to whom the letter should be sent, but please can someone respond so you do not waste people's time be asking them questions they are unable to answer.

    Do tell TP how you get on.
     
  15. Michael E

    Michael E Registered User

    Apr 14, 2005
    618
    Male
    Ronda Spain
    #15 Michael E, Oct 23, 2005
    Last edited: Oct 23, 2005
    appointments and clinics

    Lulu hi,

    I am no expert and get it wrong lots of time but I think letters are sometimes less helpful than a personal appearance if you have the time to do it. I think it is much easier to fob people off in writing or even on the telephone than when they are standing there. (this crossed with Rosalinds post and I think that is also a valid way to go... But it is good to look someone in the eyes and ask the question - also they put a face to the name.

    They probably get so many letters each day - and so many telephone calls that they all look and sound the same but if you turn up - be there - asking the questions - looking in their eyes - if possible without anger but with determination - sometimes you get better results... the problem with this communication era is the personal touch sometimes gets forgotten...

    Works for me but I can look quite fierce sometimes whilst being charming!!
     
  16. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Looking 'em in the eye

    I quite agree that you should do whatever you are the most comfortable with, but think a confirmation in writing does record whatever has gone on, and this seems particularly important with the public sector.

    It gives you ammunition if you need it later. I speak as a veteran of a campaign re sewage, overflowing drains, etc when I learned that ONLY if something was put in writing was it logged by the powers that be.
     
  17. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Personal appearance,letters whatever.
    What ever you do keep a record of all of it,every detail,conversations everything.
    Without every detail recorded you don't have much chance.
    Norman
     
  18. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I am going to write as I now need to understand why we are continually seeing different Drs as well as all the queries I have. But at the same time, ask to have an appointment myself to see the person in charge of Mum's care. Also, I shall keep careful records - have learnt this from dealing with the power companies amongst other organisations/ Thanks everyone.
     
  19. purchase

    purchase Registered User

    Aug 31, 2005
    50
    England
    Dear Lulu

    Don't know if this will help but it might.

    I am a medical secretary, should I admit to that, though not in psychiatry. I would suggest that you write to the consultant with a list of questions that you want answered. I have found from my experience within the NHS that they have to answer your questions particulary if you mention that you are not too happy with the level of care. You shouldn't have to go down this road to get your questions answered I know but if you get the answers what does it matter how you got them.

    From my point of view I find it helpful sometimes to let people know that I work for the NHS. I rang mom's GP the other day. She was very condescending until I just happened to mention that I was a medical secretary. The change was amazing. I got mom a domiciliary visit within two days even though we had been waiting for four months. As I say you shouldn't have to do this but if it works give it a try.

    Hope you get your questions answered.

    Love Jacky
     
  20. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lulu, Jacky is right, do get in touch and tactfully ask for answers. Long as you dont critisise, I have found it can help a lot. Love She. XX
     

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