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May 2014
The experiences of long-term care for seniors and people living with disabilities
May 29, 2014 10:27 AM

OPEN MEETING: On May 22nd we shared experiences about long-term care for seniors and people living with disabilities. Two themes emerged:

1. The problem of under-staffing in both community and long-term care homes - did you know there is no mandated staff/resident ratio?

2. The need to shift to a culture where seniors and people with disabilities are treated with respect and dignity

We also looked at which targets or indicators could measure the quality of the patient experience in a long-term care facility. As a result of this conversation we have set up a working group to look into this issue.

The meeting opened with a member's story of how his family decided to place his mother in a long-term care facility due to the increasing medical side effects of her progressing alzheimer's disease. The consensus among attendees was that until we address the staff/resident ratio problem, other problems cannot be fixed; at present, there is no mandated staff/resident ratio.

There's a growing awareness of a culture of over-drugging seniors and what's referred to as 'warehousing', as opposed to a culture of 'activation' which places the emphasis on living a fruitful life throughout the aging process. It's emblematic of how people view and think about caring for seniors; we see the 'them', whereas we should see the 'us'. The question persists: how do we go about changing culture?

Many attendees shared stories of their loved ones entering a long-term care home and the often devastating changes that followed. There exists an alternative model for long-term care designed to look and feel like a real home, it's called the Green House model. The philosophy is simple: it seeks to reverse the “enforced dependency” of life in a traditional nursing home. The movement is about personalizing elder care, and with a whole generation of baby boomers entering their senior years, these homes are becoming increasingly more popular. Additionally, younger people are facing this reality far sooner than they thought they would; they have to be included in the conversation as the next wave of decision-makers.

At Patients Canada we want to focus on making change, so we discussed what a Key Performance Target (KPT) for seniors in long-term care would look like. For example, low staff turnover rate, the number of falls avoided, and, more importantly, encouraging residents and caregivers to set up councils for every nursing or long-term care home. Persons with degenerative diseases or disabilities deserve to be included in decision-making about how they want to be treated and how they'll live.

We're currently in an echochamber of people arguing about the state of long-term care in Canada. If you're interested in joining a long-term care working group, please email us.

ALL, Our Open Meetings  

Long term care: not just for the old
May 13, 2014 10:14 AM

Even though many of us will eventually need it, we don't often think about long term care  -- out of sight, out of mind. It's also easy to forget that for some, like Peter Farrah, long term care is a reality at a young age. Whether young or old, the quality of long term care services in Canada is an important issue that needs attention and consideration.  We can learn a lot from the experiences of patients like Peter as reported by Susan Burgess, CBC News.

Read Peter's Story

ALL, About the healthcare system , Finding your way through the system, Stories about patient experiences  
April 2014

Being patient
Apr 22, 2014 8:58 AM

Emily Nicholas works with Patients Canada as a speaker and adviser. She is also a research assistant with the Department of Community and Family Medicine at St. Michael’s hospital and helps bring the patient perspective to design with Pivot Health group. Follow Emily on Twitter at @emily_nicholas8.

I like to be prepared for things. I am that person who reads the IKEA instructions before I build the Billy book case, and who wants to know on Tuesday what I will be doing at 3:15 on Saturday.  I’m also the type that brings her Organic Chem text to the emergency room in order to study for that weeks’ quiz while waiting to see the doctor.    

Over the past decade or so I have been tested, injected, measured, scanned and x-rayed so often that you may want to stand back a little from this page.  It was not the education I had in mind for myself.  But, as my mother is fond of saying, “nothing is wasted” and it is true that my patient experience has provided life lessons and insights that continue to serve me well.  Hopefully they can help start you thinking about what you can do to improve your patient experience.

Talk to your doctor about how you feel - and be honest:  This seems obvious but it’s amazing how easy it is to slip into a passive role when you become a patient. Being a patient can be an overwhelming and sometimes frightening experience, leaving even easy going talkative people sitting like a deer in the head-lights hearing only “Blah blah... SURGERY ...and yada yada yada”.

 It is common to feel that the doctor shouldn’t be questioned or even informed about what you think/feel because they’re the expert. Doctor knows best. As an example, after months of phone calls listening to my grandmother complain that she couldn’t sleep, her bladder was leaky and her legs were restless, my mother took her to see the family doc.  When the GP came in and asked how she was, she answered “Oh just fine thank you”.  Granny thought the doctor didn’t need to hear from her what the problem was because – “she should know”.  The reality is, as much training as your doctor has, they cannot read your mind and the more straightforward, honest description they have about how your body feels, what your lifestyle is like, and what your goals are, the better equipped they will be to help you.

Prepare to ask questions:  Doctors are very busy. I didn’t realize how busy until I started working with the family health team at St.Michael’s Hospital where I see doctors working through lunch, going home late and taking naps in the washroom (okay I made that up but I wouldn’t be surprised).  It’s beneficial to you and your physician if you come to your appointment prepared.  Write down important things you want to tell them and questions you want answered before-hand. Bring a pen to your appointment as well so you can take notes or ask someone you trust to come with you to your appointment to jot things down for you.

 It can also be helpful to ask your doctor for any useful (and legit) resources that you could refer to between appointments.  This last point can also help avoid the potential malady known as the Googling panic attack which comes with searching randomly for information about your illness.

Share your experience: Don’t roll your eyes until you’ve tried it.  Much research indicates that there is a great deal of benefit in talking about or writing about your patient experience.  There are different ways to do this. For instance, you might begin by writing in a personal journal.  Don’t worry about your grammar or even about making sense. Just start with some notes about your day, how you feel, what you’re going through.  You can share with your close friends and family, or you might find it is useful to start visiting a therapist or psychiatrist who can lend a more neutral, objective ear (granted finding one or paying for one can be difficult).  Writing or discussing concerns can help to organize your thoughts.  It’s really common when you are worried about an illness to start to think catastrophically, making up far-fetched reasons to explain why things are happening.  It’s impossible to imagine what it’s like to be a patient until you are a patient.  Hearing someone else say they “totally get” how you’re feeling can alleviate feelings of loneliness and isolation.  It’s crappy on a whole different level when it seems you’re the only one suffering.  When other people have to deal with the same storm cloud who of us doesn’t feel at least some sense of solidarity? See #IAmCanadian

Start with just today, or just this hour, or minute . . . When you have a serious illness or injury thinking about how to handle the road ahead can be overwhelming, sometimes to the point of veritable paralysis.  It's easy to get stuck thinking about what brought you to this point – why me? When this sort of thinking appears start with the mantra “Just today”.  When things are especially hard, “Just today” becomes “Just this hour/minute/second”.  It’s good to have a plan prepared before feelings get too overwhelming, so that you can bring yourself back to the present. Things as simple as breathing slowly in and out while counting your breath.  I like solving cryptic crossword puzzles, doing some stretching (even if it’s just reaching your arms above your head) and singing loudly to Stevie Wonder’s version of “We Can Work it Out”.

Don’t save a dime and spend a quarter.  We all know it’s best to be fiscally prudent. We don’t often think of it in terms of our own body and energy.  The physical and psychological stress of being a patient can be depleting.  Add the activities of daily life to that - visits from friends, appointments etc. and you are left scrapping the bottom of the tank.  We often have a tendency on good days to go at full capacity, to do as much as possible, since who knows when the next good day will come.  Then we wonder why we don’t feel so well later.   Take the opportunity to put, as it were, some energy quarters into the bank.  Set limits – maybe one appointment or friend or outing a day – to prevent yourself from going into overdraft.  It’s especially important to reserve some energy since it’s really hard to make healthy, prudent decisions when your body and mind are tired.

R-E-S-P-E-C-T yourself.

All of the things I’ve suggested will work better if you respect yourself and believe you deserve to feel well. It will likely be difficult, if not impossible, to be your usual productive self while you are ill. This doesn’t feel good as we all define ourselves to some extent by what we do….our jobs, our school work, our social lives.   Many of these things will become too much when you are a patient, and sadly it can be easy to start to feel down on yourself.  It’s even difficult to continue with those activities that you enjoy for leisure.    Trying to focus on those improving things you always thought you would get to if there was enough time, like reading neglected classic novels or picking up a new skill such as whittling or throat singing, is likely out of the question.  The reality is, when your body is stressed it’s hard to concentrate.  You need to learn to respect your limitations, to respect that you are undergoing a difficult time and that you really don’t have to continually produce to be a worthwhile person.  You deserve to rest and take care of your body. Believe me, it is trying to do the best job it can to deal with the difficulty. You don’t need to make its work harder by placing extra demands on it.

There are ways to help yourself make respectful decisions.  One of my favorites is the ‘Best Friend Technique’.  It’s pretty much what it sounds like – think of what you would tell a best friend to do if they were in your situation and then follow that advice.   Even if you begin by making prudent, healthy decisions half-heartedly and rather mechanically, after a while you will notice that you will find it coming more naturally.

You will be supporting yourself, and that really counts.

Thanks for letting me share.  I feel better already

ALL, How to tell patient stories, Patient engagement, Stories about patient experiences  
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