Thursday, 26 November 2015

New Experience: Blogging With an Editor

Last month's guest post  for GeriLynn Baumblatt of Emmi Solutions was a different experience of blogging for me. Her topic for Health Literacy Month was Health Care Transitions and it took a lot of thought to find something in my health experience that qualified as a transition.

After I submitted the idea and we discussed the first draft I felt reassured by working with Geri Lynn to fine tune the post. Usually my husband and I are the only critics.

And I'm wondering, though I only have to ask, about the etiquette of being a guest blogger and whether I can post the blog here too.

Possibly not so I present the link to the post here.   The Title is "Graduating From Patient School: Health Literacy and Care Transitions" and is the story of how the naive patient I was at the before my diagnosis turned into the aware patient I am today.

The graphic she used was apt: How do we turn on the light bulb and change?

It took so many years to make that change - maybe if more information like what we access without a thought now, had been available then, the process would have been faster.

The post was part of a series about Health Literacy and covered many types of transitions. You can see the rest of the stories here.

PS to readers: I love the picture of the girl and the giant pill and am guilty of using it again this week to make a point.

Tuesday, 24 November 2015

Where's my Prescription Summary, Shoppers Drug Mart?

When I first saw the new Shopper's Drug Mart prescription receipt I did not understand what I was seeing. It is changed to a label the size of a name tag with the backing still on it. I could peel it off but then what would I do? Maybe the idea is that I start a prescription scrapbook? 

I mentioned the difficulty I anticipated trying to save these slippery labels with 5 point type for my income taxes and my pharmacist said that I could ask for a list of money spent on prescriptions every year for income tax purposes. That's a service that can help me, BUT I still need and want the listing of my last 20 prescriptions.

For me that list has been an essential tool. With it I can accurately give details of my medications to doctors. I also use it to list medications on forms at the hospital and in the Emergency Department. On Twitter yesterday some doctors said they also use those lists to go over medications with their patients.

Yet now that feature has been withdrawn with no notice, and no concern for patients, caregivers, doctors and customers.

Burden of care is added to by having no list.

When I look at the Loblaws Corporate website I see Chairman Galen Weston saying "We understand the breadth of our impact and influence." I appreciate that sentiment but wonder how many doctors and patients were consulted about this change that has a fundamental effect on my ability to manage my drugs and prescriptions.

I like the idea of the patient, family doctor and pharmacist as the basic unit for regular health management. But now, at the same time as Shoppers takes on more health services such as flu shots and Med Checks for profit, they are stepping back from the patient's needs.

My pharmacist responded to the problems I raised with:
"We all change and we expect our customers to change too." 
"You have to manage by yourself somehow." 
"Our expectation is that the patient will keep track of their medications."

Excuse me Shoppers, I am a highly literate patient and that is just one of the areas where I have challenges. Luckily at this moment I am not in a crisis but many of your clients are struggling with their health. Many of us stagger from crisis to crisis.

What about our aging population, people with low vision (Did I mention the 5 point type on the receipt?), and the more than half of Canada's population who are not health literate? 

Another statement on the Loblaw's website (Loblaw's owns Shoppers) is this:  "Our strong commitment to corporate social responsibility defines the way we do business and the role we play in society."

These statement do not match the Shopper's Drug Mart withdrawal of their useful and traditional prescription lists. 

I hope they will look for a solution to this problem which is either happening to us now, or will soon be apparent at a  Drugstore near you if you are a Shopper's Drug Mart customer.

This is the top section of the form we will no longer see.

Added after another visit to Shoppers: The pharmacist was able to produce a list for me on two full sheets of letter size paper that covered fewer prescriptions than the small summary of 20 that I am used to. Not convenient for me to carry and keep with me but at least I can use it for renewals. Not the best solution, but as a stopgap it will help.

Friday, 13 November 2015

Change: Not the Kind You Need

It's been a long time since I put my change into a wallet. Now I just drop all the change straight into my purse - If I need some I shake the purse and scoop some up. It's too heavy to carry around so I follow Julie's example:

"I take any change out of my purse and put it in a container on my dresser.  When I have a bunch of coins, I give all of them to John and he either rolls it, uses it or takes it to the bank.  I don't usually pay for much of anything."  

Paula has a tougher time.

"My hands are claw-like now except for the thumb and the forefinger. I keep forgetting I don’t have use of those fingers like I used to so I am always dropping things.

Today I was standing in line and 5 cards from my credit card pouch fell to the floor......the lady behind me picked them up.  Then another one dropped and she picked that one up for me.  Thank you!  GOOD GRIEF!  I have to remember that only my thumb and forefinger are viable.  The rest are just taking up space.

Hard to type when your hand is not straight

Julie has another issue:
"You were talking about hands and fingers.  The other day, I needed to copy a bunch of papers and went to my main big printer and it would not work!  It said there was a paper jam that we could not find. I was also trying to use the automatic feed and the paper got caught in there. I finally got it working, but black streaks were on everything and the paper came out wrinkled.

Meanwhile, I thought that I would just use the other wireless printer.  Turned it on and it was out-of-ink!  Sent John to the office supply and he brought home 5 new cartridges (that is what the wireless printer takes).  I decided that I would change the cartridges while John was gone - big mistake!  Each cartridge was completely sealed in plastic and I had a devil of a time getting the plastic off.  Then an orange plastic thing has to be turned to be taken off before installation.  By this time, I could barely move my hands/fingers.  Then, I could not get the old cartridges out as it has to be done with the bad fingers. Finally, after an hour, I was able to complete the task, but could hardly use my fingers.

I went back to the main printer and found where the black streaks were coming from and cleaned them off.  Then, still - each copied paper came out wrinkled at the top of the page.  I almost took the printer apart looking for a reason but finally just threw all of the paper in the paper tray away and put in a new load of paper.  I finally got it working without streaks or wrinkles.  My fingers/hands still have not recovered. It is such a nuisance to have such bad hands and fingers"

Polly commiserates:

Isn't it frustrating to have to jump thru hoops to get things that should be so easy?"

I know what you mean about those cartridges and then to get them out of the plastic casing.  Good gravy!!    Wow, five cartridges...that’s frustrating to fight with that.  I would be sweating after 10 mins.  It is awful to have such bad hands. Are they still sore?  What an ordeal for you.....

I need to buy a wrist brace. I wonder if I could get it on  myself?  If I can't work with the fingers I have I wonder if the brace would make it worse...more bulky. 
I don’t need more stuff to impede my 52 pick up fingers. Even just getting things on the conveyor belt is an obstacle for me. I kind of fling the items up there."

And Julie provides people with a distraction:

I wear my wrist brace a lot and people don't look at my hands/fingers much - they are looking at my wrist brace and then I tell them that I have arthritis.  Then, they start showing me osteoarthritis in their fingers and saying how much their thumb hurts - turns the attention away from me.

Saturday, 31 October 2015

Kidney Week and RA

This blog starts with a patient story, just the way we are told that many hospital and heathcare meetings begin.

Julie has rheumatoid arthritis (RA) and knows about CKD (Chronic Kidney Disease) from experience.

"There are different levels of CKD depending on how well the kidneys work.  My Kidney disease is at Stage 2.  My kidneys work at 42% of what might be considered normal.  Most people's kidneys don't work as well when they age, but mine are worse.  

From etsy shop YourOrganGrinder. Buy yourself a kidney

I actually have no symptoms.  People don't usually have symptoms until the numbers get much lower.  I do have to keep my blood pressure under control and can not take several medications - like NSAID'S, Tylenol, biologics, etc.  The Vicodin that I take has a small amount of Tylenol, but my doctor said that was all right.  He sees many patients who have kidney problems from the NSAID'S - they have taken too many.  

A man who John worked with was taking Advil like candy for his osteoarthritis and went into kidney failure.  He had to go on dialysis for a period of time until they were able to get his kidneys working again.

My problems all started with a medication that I took - Vioxx  (a cox-2 NSAID).  It put me in to kidney dysfunction 6 weeks after I started it.  Vioxx is now off the market because mainly because it was affecting the Hearts of people that took it.  But - it affected my kidneys.  

After stopping the Vioxx, my kidneys returned to close to normal but apparently more kidney problems showed up later - you know how the inflammation of Rheumatoid Arthritis likes to attack internal organs.  My Internist sent me to a Nephrologist (Kidney doctor) and he has been checking my kidney levels ever since.  I have extensive renal tests every year.  So far, I have remained at a stable number."

I have had a draft of this story from Julie for a few months now but today seemed to be the perfect time to post it.

This morning the #HealthXPh tweet chat, run by doctors in the Philippines was about dialysis. You can see the blog here. This treatment for CKD is hard for anyone, with 3 dialysis sessions a week being ideal. Imagine how much more of a burden it is in a country where personal income is much lower.

A few hours after HealthXPh I saw Bernadette Keefe's (@nxtstop1 on Twitter) storify of events leading up to next week's nephrology conference celebrating Kidney Week November 3rd to 8th. 

If you're on Twitter the hashtag for the conference is #kidneywk. There are scary stories about kidneys out there - one is the urban legend about waking up in a bathtub of ice with your kidneys stolen. Kidneys are small but necessary.

Sunday, 18 October 2015

Hats or Silos? You Be the Judge

The more involved I get in being active in the health area, the more "hats" I collect. When my chronic disease was my sole area of focus, my aims were clear. Now that part of my story has become the background to efforts to change the system. 

Research Role

There are opportunities now for patients to be involved in research funded by SPOR (Strategy for Patient Oriented Research), which was set up to help, enable and encourage patients to take this opportunity to add their unique viewpoints to medical research.
I'm on some research teams and doing my best to fit in, learn new skills and influence the projects through providing the patient point of view. I was asked to take an ethics course (TCPS-2) that is a requirement for researchers. It turned out to be useful that I had started the process to register with CIHR to be a volunteer board member. There's a lot to learn.

System/Quality Role

Another role is trying to become involved in decisions about the health care system. The belief that patients are the largest stakeholders in healthcare and should be involved in deliberations and decisions that affect healthcare is no longer unusual. This effort promises to be a long-term, with lots of interesting discussions about what defines "meaningful engagement." Market research techniques like surveys, focus groups and even one on one interviews with consultants make most of us think more about tokenism; not feel like partners.

Hospital/Community Role

We've seen patients on hospital Community Advisory Boards (CACs) or Patient and Family Advisory Committees (PFACs) in past years. What has changed is that now hospitals are required to have a patient and family committee or council - this means that all across Ontario there will be patient advisors involved in every hospital. This will give many more people a chance to learn and contribute with the hospital team. How much effect will this have on hospitals? We'll be watching.

Now that I am a member of a hospital CAC I am wondering how much can be accomplished in five 2 hour meetings a year?

Volunteer Role

In addition to those areas, many active patient or caregiver volunteers are working with our own disease groups to promote advances in care, working on changing the curriculum for medical students and doing the huge and often unappreciated job of family caregiver. They manage to do this despite the steep learning curve that is necessary for the care of themselves and their loved ones. As Seth Godin says, "When we confront a vocabulary that we don't understand, we can either demand that people dumb down their discourse (and fall behind) or we can learn the words."

Teacher/Student Role

The information we need to fulfill all of these roles takes a lot of work. It's scattered over the internet, given to us by other patients, and found in research. There's a problem with the research though - it looks more like patient engagement is developing as an "emerging area of expertise" (ie new silo).

Patient needs and system wants are not aligned. It would be useful if there were a course for patients, who are the only ones in the system who are (often) self educated and also volunteers. Patients could be helped with an educational pathway which would add to their professional skills and experiential knowledge and help them gain the knowledge to be part of a person-centered health care system. Then they could go beyond their personal experiences as patients or caregivers and help to improve the health system for everyone.

I'd like to see the conversation shift a little from talking about patient engagement and look at the other side - system engagement.

As a patient, being involved in all of these areas is like being able to enter numerous silos. Meetings take more energy because you need to think inside each different silo, even when the connections to other ones are obvious.  If we want to talk about overall issues for patients we'll need to start our own Whole Patient Movement or write letters to CIHR. 

All of these areas have their own goals: SPOR is funded to focus on including patients in research. Hospitals usually don't involve patients outside of their own institution and attached community and decision makers prefer to involve patients through surveys, focus groups and intermediaries such as consultants so that discussion stays in their pre-chosen framework.

At Health Quality Transform this year a separate stream was added to the long-planned program to encompass the patient advisor experience. This centered on people who are PFAC members and in a patient advisor role through hospitals. It was the only segment live streamed, which was welcome, but I was wishing to see more of the other presentations, that would enrich the whole person, not just one slice of the patient pie chart. 

Rather than seeing patients break down silos, patients are having to silo their knowledge and use appropriate pieces of it depending on the circumstances of their encounter. The patient has many silos within themselves and this just can't be healthy.

As any grain farmer knows, silos can be deadly. (thanks to Pat Rich for that insight)

The Whole Patient wears a more complex hat

Post on authentic patient voice here

Definitions and some news from the patient scene

ImpactBC is a registered Vancouver-based not-for-profit organization that provided coaching and collaboration with health care partners related to quality improvement, and public and patient engagement

Now that the Deloitte has won the contract to provide this service, the volunteers will be asked to volunteer through Deloitte. Outsourced engagement!!

Citizen engagement is the meaningful involvement of individual citizens in policy or program development. To put it simply, citizens are "engaged" when they play an active role in defining issues, considering solutions, and identifying resources or priorities for action. This "meaningful involvement" can take place at a variety of stages in the research, planning, or implementation phases of a project.

"citizen engagement is the meaningful, timely and appropriate involvement of individuals and potential support systems in policy development, program planning and implementation, research development, and health care decision making. In the context of health care, engagement can occur in the research setting, health are setting, and policy setting.Is it to inform/educate, gather information/views, discuss through a two-way dialogue; fully engage on complex issues; or partner in the implementation of solutions

Inform, consult or engage?

International Association for Public Participation (IAP2): “Public participation communicates to participants how their input affected the decision