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Complex Chronic Diseases Program Patient Experience

Discussion in 'General Treatment' started by panckage, Feb 11, 2018.

  1. panckage

    panckage Senior Member

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    Here is a copy of the my experience at the Canadian Complex Chronic Diseases Clinic (CCDC). I got a call from a counselor(?) a couple weeks after sending it in. She seemed nice but after the call I realized that nothing she said gave any evidence of her actually reading the letter. There was not a single paraphrase. Interestingly she never heard of the issues with CBT/GET for ME/CFS. I wrote a letter afterwards informing her with a couple of links describing the issues.


    Reading this, however, http://forums.phoenixrising.me/inde...ogram-ccdp-patient-engagement-findings.56218/ they don't even mention CBT/GET issues which I find very hard to believe. Anyways, here's a copy of the letter I sent reviewing my experience: (Sorry the formatting didn't copy/paste well)




    -----------------------------------------------------------------------------------------

    This is a review of my experience at the CCDC.


    As someone who has had ME/CFS and fibromyalgia for over 8 years I have developed many strategies to deal with disease. I know what my maximum capacity and I do my best to operate at that level. Thus, adding something to my life means that I must take something away. This is exactly the outcome of my CCDC experience. Unfortunately though, nothing of value was added, but things of value were sacrificed (eg. physcial rehab routine) in the patient’s life . I made the wrong decision to attend the CCDC. I was wrong to trust. My treatment at the CCDC has lead to a documented moderately negative decline in health.


    I have taken daily records since August. 2015. My worsening in 2017 is due to the addition of unnecessary and harmful things in my life. My experience at the CCDC is not the main contributor to this but it is an important one that could and should have been avoided.


    My monthly normalized health data can be found here:

    https://docs.google.com/spreadsheet...vZKSRMH237AuotOMB1e8LWCo8/edit#gid=1315951860


    This decline could have been lessened or even prevented had the clinic provided full disclosure on treatments offered and the claimed evidence behind the treatments. Treatments such as CBT/GET were pushed. When the patient asked questions about such treatments the patient was yelled at and stigmatized. Anger is shown to the patient for not enrolling in such treatments



    Patient Experience notes:



    Patient preparation

    • Watched the Intro video
      • Actors used instead of patients
      • Comments are disabled for video
      • Video full of vague and useless information
      • False Claim
        • Patient notebook is used
          • It is claimed we will use this every appointment from now on
          • Practitioners never brought up the patient notebook a single time
          • Patient brought up the patient notebook halfway through interview with RN. RN’s response is patients rarely come in so she didn’t remember. Takes papers but doesn’t take the filled out patient experience at CCDC form (which includes critique of the video)
    • Treatment protocol (1 year out of date) was printed and researched



    Dr. Arseneau appointment

    Expected outcome:

    • Doctor takes into account he is communicating with someone who has a cognitive disability
    • Patient and doctor converse about possible treatments
    Actual outcome:

    • Talks about trazodone for sleep but refuses prescribe it
      • I had to go to my GP who happily prescribed it
    • “Recommendation” of cannabis for sleep
      • Patient already utilized cannabis and has tried for sleep before but doctor is aggressive and doesn’t give patient proper time to remember outcome
      • Patient asks where the Cannabis clinic is. Doctor avoids question and instead talks about how great the clinic is
      • As it turns out
        • Patient has to pay $550 for a plant he already uses
        • Patient is expected to travel to Abbottsford. Doctor doesn’t mention this even though he was asked directly about it
        • If doctor really believes in cannabis why not do the paperwork himself? ($50 fee)
    • Doctor acts very happy when puts no medications recommended on patients’s form
      • Cannabis is already used by the patient so only difference is that the patient must now pay $550 to use a medication ‘legally.’
    Evaluation:

    Dr. Arseaneau chose to spend this appointment advertising for a private cannabis clinic. This appointment was a complete waste of time for both the patient and the doctor. If patient had been properly informed he would not have attended the appointment. Patient becomes less trusting of of the medical system when it comes to me/cfs and fibromyalgia treatment


    Handouts

    Handout includes such information as

    • Don’t nap after 3pm
      • Is this a joke?
      • What disease does this this clinic believe it is treating?
    • Visit family doctor at least once a month
      • To get more stigma? What can a GP do for me/cfs and fibromyalgia?
    This information has nothing to do with me/cfs or fibromyalgia and is an insult to patients.



    Sleep specialist appointment

    Expected outcome:

    • I'm not sure. What does this have to do with me/cfs or fibromyalgia?
    Actual outcome:
    • Therapist talked about sleep therapy for me/cfs but was not able to provide any support for claims
    • Therapist was not able to provide any information as to how the information relates to me/cfs or fibromyalgia
    Evaluation:

    This has nothing to do with me/cfs or fibromyalgia. Why is it offered?




    Nutritionist

    Expected outcome:

    • That the practitioner could help patient find a pattern in food intolerances
    Actual outcome:

    • Advertisement of unreliable privately conducted food intolerance test on the
      • Wait 2 years on the waiting list for an advertisement?
    • Calculating daily protein requirements on a calculator
    • Was given a sheet of food families to help link food intolerances
      • The sheet turned out to be of no use, but the attempt was appreciated
    Evaluation:

    The nutritionist was nice but this information could have been written on a webpage. This clinic instead made the patient instead wait 2 years on the waiting list and lose a days worth of pay.





    Phone call appointment

    Expected outcome:

    • That a number of different options would be presented and a discussion would occur about the options
    Actual outcome:

    • Patient loses a half days pay in order to answer ~5 yes/no questions
      • RN would not discuss anything.
      • RN gets angry and yells over patient when the patient asks why he has to take a half day off work for this
        • RN will not come up with other solutions.. When patient mentions email the RN says she doesn’t do email nor does she offer any other option
      • Patient says “I am not interested in CBT. Are there any other treatment options?”
        • The RN’s response is yelling and anger. RN threatens to not contact patient again several times. I repeat my question several times. The question is NEVER answered.
      • RN decides on her own to stop contacting patient
        • Patient is never informed of expectations for physiotherapy ( I am assuming this is the person who was supposed to inform me)
        • It turns out other treatments besides CBT were available but the RN was unable to communicate this even though she was asked directly
    • Patient is never contacted by RN again


    Evaluation:

    RN was emotionally abusive to patient. Patient loses half a days salary to answer ~5 yes/no questions on the phone. Long lasting anxiety, depression, anger results.



    Physiotherapist appointment

    Expected outcome:

    • A basic physical therapy examination including evaluation of activities of daily living
      • eg. walking, standing, sitting, working in the kitchen, etc.
    • Documented physical ability/inabilities
    • A full body workout plan designed with an emphasis on helping the physical inabilities noted
    Actual outcome:

    • Patient is prepared in gym wear but is promptly told that is not done here and that someone should have informed me. I was never informed.
    • My expected outcomes were communicated to the physiotherapist. I went over a number of the specific issues I have and problem areas. They were never addressed. Instead I was told vague ideas which did not fit my experience. The therapist seemed upset and in disbelief that my experience was different This disbelief included using prescribed methylphenidate in order to do cardio. She was also in disbelief that I use slow (controlled) breathing when I walk up the stairs. When I finally asked what this visit was about she said “energy.”
    • I was told at the end that maybe we could work on what I wanted next time but why would I bother? I spent an hour defending for things that have worked for me. I was given no indication that the therapist has any skills regarding ME/CFS.
    • Therapist could not believe a heart monitor was not helpful for patient
    • My experience did not fit the therapist's beliefs. The reponse was for the therpist to argue and convince the patient of non-sensical treatments
    • Physiotherapist refused to do any physiotherapy whatsoever despite patient bringing it up several times
      • Patient tries to focus physiotherapist by saying he is working towards full body exercise. PT responds with “That’s what everybody wants!” and continues to refuse physiotherapy
    • PT asks several times if I’ve considered seeing a physiotherapist
      • PT makes several attempts to convince patient to see physiotherapist while simultaneously refusing to do physiotherapy
      • Is this a joke?
    • Patient is told of the ideal heart rate for “chronic disease”
      • What is “chronic disease?” Therapist becomes upset when patient asks what “chronic disease” refers to
    • Wholly inappropriate non-sensical “treatment” is recommended
      • Treatment described is GET
        • GET has been removed from the CCDC treatment protocol sheet but is still offered by this therapist
        • Patient told to, for example to do 5 min of exercise a day and increase that amount by a minute every week or two
          • This advice was given to someone who works 30 hours a week


    Evaluation:

    • Patient never informed of what would happen at the appointment
    • Patient has waited 2 years on the waiting list for a physiotherapist refuses to do physiotherapy while simultaneously trying to convince the patient to see a physiotherapist.
    • Patient is in the process of making a Human rights complaint against my employer but will not have evidence of his physical condition because therapist refuses to do evaluate patient’s condition
    • Patient delayed getting physiotherapy because of this and consequently had worsened physical condition
    • Patient suffered a collapsed right arch in my foot due to orthotics that were improperly prescribed. This would have likely been found had a routine physiotherapist inspection taken place
    Ironically, if the physiotherapist had not known I had ME/CFS likely I would have had a positive and helpful experience.



    General notes

    • Practioners often refer to chronic fatigue as opposed to chronic fatigue syndrome
    • Practioners typically did not seem to know which disease(s) they were treated
    • Practioners could not answer which disease a treatment was indicated for
    • Practioners could not answer questions about any of the CBT offered




    Overall Evaluation



    Positives

    • Minimum cost
      • CCDC can minimize cost while claiming to “help” patients while at the same time minimizing cost
        • 2 years on the waiting list to listen to sales pitches
        • Lack of objective treatment outcomes support this
    • Broken trust ensures patient in future will have increased avoidance with me/cfs ‘professionals’
      • Patient has learned not to trust medical professionals who claim to treat me/cfs and fibromyalgia
      • Clinic refuses to provide evidence for “grade A” therapies despite it being requested several times


    Negatives

    • Clinic will not provide relevant notes on treatment beforehand. Instead a cognitively disabled person is expected to be able to discuss issues with the doctor and clinicians in real time
    • Clinic doesn't follow own protocol
      • Doesn't use patient notebook
      • PT still uses the GET protocol even though it was removed from treatment protocol
      • Introductory video talks about not stigmatizing patients when at least 2 clinicians actively engage in it
    • Completely subjective and useless data collection
      • How do you feel 1-10?
      • No questions about activities for daily living
    • Laughably random educational materials
      • “Don't nap after 3pm”
      • See your family physician at least once a month
        • To get insulted for having a disease that has no treatment and that is heavily stigmatized? Is that the purpose?
      • If a practitioner wants a patient to trust them they must give the impression that they at the very least know which disease they are treating
    • Will not answer questions or provide evidence for treatments (regardless of the claim of grade A evidence) while at the same time as trying to force patients into these treatments and stigmatize them for not agreeing to the treatment
      • Patient can not make an educated decision and is yelled at for requesting information
    • The RN is emotionally abusive
      • Gets angry and yells at patient when a question is asked
    • A physiotherapist that refuses to do physiotherapy
    • A doctor who background is education but
      • gives wrong materials to the cognitively disabled
      • Does nothing to meet the patient at their level
        • Someone sick for 20 years and is highly educated about the disease will get the same materials as someone newly diagnosed that has done no research
    • Two year waiting list for “treatment” that in reality are advertisements for things not in the clinic, and not covered
      • Physiotherapist won't do physiotherapist but keeps trying to sell the patient to go to an independent PT
      • The nutritionist recommends a food intolerance test that is not accepted in Canada and banned in certain states
      • Dr. Arseneau - a cannabis clinic in Abbotsford
      • Wait 2 years on the waiting to hear a sales pitch on private treatments of questionable validity
    • Lost 2.5 days of pay
    • Continued angry/frustration/anxiety

    After my experience it is very clear to me the reason why Dr. Alison Bested abruptly left this clinic. She could be a part of this farce that pretends to be medical treatment. Congratulations to the CCDC for making Dr. Bested not only leave the clinic, but leave Canada as well.

    In my experience the only thing that matters to my clinic is minimum cost. Taking advantage of sick, especially those of us with cognitive disabilities is a strength of this clinic




    A true minimum cost alternative


    Since the primary concern of this clinic is minimum cost I will approach an alternative from that point of view. Waiting 2 years to hear sale pitches of treatments not covered by the CCDC far from ideal. This clinic can be replaced with something cheaper and something that can benefit patients. Here is a reasonable proposal:

    1. Close down the CCDC
    2. Instead hire 2 practioners
      1. Website maintainer
        1. Create a website with treatment options that are well described and that links to available evidence
      2. Outreach worker
        1. This practitioner can spread information on treating/diagnosing me/cfs and fibromyalgia to GPs and other healthcare practitioners, including presentations at professional development conferences

    Benefits

    • Cheaper
    • Practitioners aren’t aren’t forced to give inappropriate and invalid treatments
    • No 2 year waiting list
    • Potential to help patients as opposed to hurting and stigmatizing them



    An Offer

    My experience at the CCDC was was horrible and it has haunted me. It has further stigmatized me from getting help with me/cfs. I believe I have been clear in my prior expectations for treatments, what actually occurred as well the evaluations of the services offered.


    I have lost 2.5 (~800$) days pay attending these appointments. I will use this as an offer of redemption. My offer is that the practitioners donate their salaries from the time spent ‘treating’ me to the Open Medicine Foundation (OMF) for research in me/cfs. I will in turn donate another $800 for the time I lost attending appointments and answering a 2 minute phone call. At this point this is the only way i can believe the CCDC has just intentions

    [contact information removed]
     
    Last edited: Feb 11, 2018
  2. shannah

    shannah Senior Member

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    Thanks so much for relaying the details of your experience @panckage
     
    andyguitar and MEMum like this.
  3. shannah

    shannah Senior Member

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    andyguitar and MEMum like this.
  4. panckage

    panckage Senior Member

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    Vancouver, BC
    shannah likes this.

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