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    Community Voices

    Mental Hospital Tycoon; A Total Insult to Mental Health Patients and Professionals Alike

    Who doesn't love a good tycoon style game? You get to manage a business that you'd otherwise never get to manage. You get to exert some control over something in the midst of chronic illnesses that constantly threaten your grasp of controlling the circumstances of your own life. It's an escape. Sometimes medical based tycoon style games like Project Hospital, for instance, are quite therapeutic as you help find diagnosis for patients and build a facility that you wish could be accessible to you somewhere. It puts you in a place of figuring out a diagnosis when your own is so complex that even the best doctors are still going "heck if I know!". It's sort of a break from your own illness firna moment and instead of the constant endless loops you face with your illness, you find yourself facing someone else's but there's a linear process to discovering the source of the problem. If life only worked that way all the time!

    But then comes the misuse of the format. Recently I was on the Play Store when I came across a game that says "build your own mental hospital". From the get go it sounded cringy to me. However, a game in which you create a mental health facility is not at all a bad idea. It would empower patients to create the types of environments we want to really see and possibly give insight to professionals about what may really be beneficial for us and helpful if it let us design treatments etc. But this is not that game. It depicts stereotypes and not just stereotypes, but the blatant mistreatment of those with mental illness and further stigmatizes them. The game features restraints holding people unwiingly down onto beds, lock ups, beatings, patients escaping and stealing trucks on a joyride, features patients reminiscent of a band of stereotypical mocks of absolutely inaccurate depictions of mental health conditions, treatments that not even some of the worst former institutions would utilize, and altogether is a dangerous perpetuation of a stigma that still results in needless loss of life for those suffering from mental health conditions because of stereotypes like this that make people afraid of seeking mental health treatment. This depiction of a mental hospital is downright irresponsible, insulting (both to patients and mental health professionals alike), and quite dangerous should a child be exposed to this and think this is the standard treatment of the mentally ill in our society or that people with mental health conditions are to be feared, treated as inferior, or abused and it's all just par for the course, fun and games, etc. Perhaps the most disturbing overtone is that the patients deserve what they have coming.

    What's your take?
    Is it just a harmless game poking fun at the most serious parts of life to take the edge off? Or is this a problematic, dangerous depiction that should be removed from the Google Play app store?

    I tend to think the later is my personal view.
    #MentalHealth #Depression #CPTSD #PTSD #VideoGames #App #appreview #Anxiety #ObsessiveCompulsiveDisorder #LearningDisabilities #PatientAdvocates

    7 people are talking about this
    Community Voices

    Who to Contact when hospice says they’re coming to evaluate while patient organs maybe failing and never show up. Hospice said they were coming and just never showed up. Told us they were doing us charity. I don’t even know how to fathom or handle this#neglect

    2 people are talking about this
    Community Voices

    What is 1 Sentance That Saved your Life ?

    <p>What is 1 Sentance That Saved your Life ?</p>
    15 people are talking about this
    Community Voices

    #MyalgicEncephalomyelitis

    So I finally got a referral to see a neurologist. I think...I have to double check with my eye doctor to make sure it’s gone through.

    Based on the symptoms, I’m fairly certain I developed ME and/or CFS after I had viral meningitis last year. It also makes sense with the IIH I have been diagnosed with (ironically a month before the meningitis). I thought the IIH symptoms were caused by severe migraines (which run in the family, anxiety&stress, and malnutrition. I finally went to the doctor about it after I almost passed out at work.

    I think I had IIH for several years previously, but that not the point.

    How do I talk to the neurologist about my suspicions and personal history?

    1 person is talking about this
    Community Voices

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    Community Voices

    Rare disease information on the internet.

    One of my pet hates is the the internet meme "Do not confuse my medical degree with your Google / Internet search."

    Thankfully I have never physically met a doctor who has tried this on me but I have heard stories from fellow patients where similar thoughts have been expressed.

    Patient advocates can help fellow patients with internet searching to allow patients to ask their doctors informed and relevant questions at appointments.

    With any rare condition it should be a two way process when doctor and patient can learn about the condition together.

    The idea that "doctor knows best" is not always true.

    #RareDisease #puberty #PatientAdvocates
    #KallmannSyndrome  #testosterone

    1 person is talking about this

    How Storytelling Can Help Encourage Patient Engagement as Volunteers

    In many parts of Canada, healthcare organizations are looking for ways to include patient partners or voices. Sometimes this is due to provincial mandates (which sadly can be little more than checking a box). Other times, it’s the result of a true desire to hear (and hopefully include) the patient’s perspective. As a patient advocate, I am often asked how can we get more patients involved as volunteers, committee members or to take our surveys. 1. Personal storytelling. Don’t jump to the end where you want to get the patient’s input on something they may or may not understand. Rather, start w ith telling the story of your organization, program, service, committee, staff, etc. And no, this doesn’t mean producing a boring annual report no one will ever read. I’m talking about telling the stories of how your organization or programs impact people. Many organizations assume people know their mission or vision (which may be from the 1980s and isn’t relevant to the work done today). Staff also incorrectly assume patients and their families understand the work they do, the various programs offered and, most importantly, the impact they have on people’s lives. This assumptio n limits patient engagement. It’s hard to provide input on something you don’t fully understand or appreciate its value. 2. Break it down. Storytelling needs to be done in bite-size pieces. It’s hard to relate or connect with the bigger picture. So start with small, personal stories, slowly building not only knowledge but also an appreciation for the work of your organization. An example is a speech therapy clinic inside of a larger health care organization. Instead of trying to explain the entire clinic in one story (which is often the case), individualize the story. Focus on one client profile (obviously with the client and/or family’s permission). Tell the story of the client’s challenges, the work done in speech therapy and the progress that has been made (highlighting the emotional/personal elements). Looking at the same clinic, you might do a day in the life of the speech language pathologist (SLP) profile. This can be done through video or feature story (such as an interview with the SLP on what a day looks like, highlighting the variety of her work). Over time, through storytelling, you help your patients and families understand the scope of work done. This helps create the ever-important personal connection to your organization. Now, when you need to include patient partners or volunteers, you will be able to tap into a group that has a better understanding of your organization (or you can share articles and videos to educate them). It also helps health care professionals get clear on who they need to hear from (instead of taking any volunteer with a pulse). 3. Share your stories. Don’t just post your stories on your website and assume they will be found. Include them in newsletters, share on social media (yes, this means you need to be active online) and include as a link in follow-up emails with patients. Look for ways to continue to build a relationship with your patients and their families outside of their appointments. Creating and maintaining a Facebook group or page for your organization is a great start. As you start sharing your stories, you will find it easier to recruit patient volunteers. Why? Because by sharing your passion and providing insights into your organization, they will be able to see where they can provide input and, most importantly, how their voice will be heard. So let’s go beyond token patient engagement, and begin building the personal relationships, through storytelling, to truly transform healthcare.

    How to Support a Loved One With a Problem With Their Medical Team

    This last week, my patient advocacy skills have been put to the test. Not for me, but as long-distance advocate support for a friend. It all started with a simple Facebook message, asking a friend in another part of the country how her surgery went. The response, and messages over the next week, were upsetting. Not only did she have post-surgical complications, but her medical team didn’t take her escalating concerns seriously (all based on symptoms that legitimately needed further investigation). I won’t go into the details about the complications or the medical team’s response (which included chastising her for going to the ER when she had a high fever and was in serious pain). Rather, what I want to talk about is the role each of us can and should play in supporting others in advocacy. 1. Importance of listening. When my friend started telling me about her initial complications (that only got worse), I resisted the urge to jump in and tell her what to do or complain about our medical system. Instead, I asked her a number of questions about why she was upset, what information she was lacking and what action she was hoping for from her medical team. Even though I’ve had the same procedure as her, I didn’t spend time comparing my experience or trying to diagnose, as I’m not a medical professional. (It can be tempting to do this, but resist the urge.) I helped her get clear on the information she needed and formulate her thoughts for when she called her doctor. As her journey continued (involving ER visits and more doctor appointments), I was there as a sounding board. I did not pretend to know the answers but rather helped her develop the questions she wanted (and needed) to ask. I also helped her be firm on what she was experiencing, how it made her feel and have the confidence to push back. And a lot of what I did was listen. Listen to her fears and concerns. Listen to how she was feeling unvalued and unsupported as a patient. And, listen to what actions she wanted to happen. 2. Pulling it together. I was able to do all of this objectively and with a clear head because I wasn’t the person living this medical experience (or nightmare). Rather, I was sitting on my computer, thousands of kilometers away, hearing what she was saying and being able to process the information. I wasn’t sleep deprived, scared, in pain or feeling intimated (and being intimidated) by a medical team. And this is why it is so important we don’t just advocate for ourselves, but also help others find their voice. I didn’t attend medical appointments with her or call her doctor, but I did give her a safe sounding board for her concerns, listening without judgment. This is a role she not only appreciated, but also needed to help her through a difficult time 3. Pay it forward. The vision each of us has for patient and family-centered care — to be more than a tagline on a website and a living, breathing patient experience — requires us to reach out and help others. Help those who are going through rough times, who are vulnerable or don’t have the energy or tools to have their patient voice heard. It’s not just about us and our individual patient experience. Rather, it’s about working collectively to help improve the patient experience for all patients. For me, I was more than happy to help my friend find her voice and advocate for herself. I was able to share the lessons learned through my own journey as a patient and a mom. 4. Self-check-in . I should also caution that before you jump in to help someone else, check in to see how you are doing emotionally and physically. It’s just like the instructions on airplanes to put on your own oxygen mask before helping another person. If it’s not a safe time for you to help, let the other person know. But if you are in a place to offer support, do so. It will not only help the person needing your help but also help you refine your patient advocacy skills (and hopefully transfer some of these onto the medical team). So, the next time a friend or family member is complaining about negative patient experience, take a moment to think if you can help in any way. This could be listening, helping them formulate their thoughts or taking them to an appointment. Even picking up the phone or stopping by for a visit and truly listening to them can be of great support. And guess what? There will be a time when you need someone in your corner. So why not pay it forward and help someone else?

    Community Voices