Tuesday, 2 February 2016

The Real Rheumatoid Disease: You Mean It's Permanent?

Usually the pain and worry of rheumatoid disease (RD) is not a topic on my blog. In a change from positive strategies and ways to cope with chronic illness I'm going to talk about the worries that arise as we age with RD, based on my point of view as well as a few friends.

You can become discouraged with chronic disease. Even when you are doing everything right, enjoying life and being productive in ways that are important to you, you wake up every morning and RD is still there. That's why the groundhog is our symbol. 

Since this year's topic for RD Awareness Day on February 2 is The Real Rheumatoid Disease, here are some concerns expressed by women who have been dealing with it for a long time.

RD just never stops - it's as determined and persistent as the people who  live with it are. The day never comes when we can relax and feel on top of our health.

Polly's view

I think of Polly as my RA twin. We were diagnosed at the same age and have a lot in common. Here are some comments from her:

"Who knows when they're first diagnosed that Rheumatoid Disease (RD) is more than stiffness, an 'old persons disease' or claw-like fingers?" 

She says that people think you get RD when you're old, but it’s not always true. You get RD when you're young and you're in shock. I was upset lately when a doctor said to me "We don't see hands like yours anymore." 

A doctor told her, "Well you know you're 65 and you're going to get something..."  She told him that she's "had something" for half her life. Her plan is to switch doctors and find one less dismissiveSometimes she gets tired of fighting it all.

Julie is a bit older

Julie says try being in your 70's!! She always has good advice, and is pleased that most of her doctors haven't given up on her and keep trying to help.

She feels that her long-time Internist is the most apprehensive at the same time as she appreciates his help. He's the person who has seen her going down-hill and sees all the records from other physicians.

I like her definition of old:
"I don't consider people in their 60's elderly. 
I have read that 65 to 75 is "Young" old
75 to 85 is "Old"
and 85+ is "Very" old."

She agrees with Polly that other diseases or conditions piggyback on the inflammation of the RA or the medications that we have taken.


Polly thinks we're not rewarding to our doctors anymore because as RD damage and effects start to pile up there isn’t much that can be done.  

Ally has complications

Ally worries about the healthcare system making life harder for those who have chronic or terminal illnesses. (She's making a statement here about COPD and Emphysema.) 

"It is just the opposite of good medicine for the patient, to increase stress, discomfort. Waiting for test results that take forever to be processed is not good medicine. They live out of a book and we live out of our bodies.

She also sympathizes with doctors who have protocols on how many patients they must see in a day. She thinks that their constant running does not equate to good medicine


I just had my first lung scan.

"It's terrible when the doc is aware of a problem like crackles in your lungs but doesn't tell you !!! I am so tired of fighting for things now. I really feel like just giving in."

Back to me

We're no longer young and when we were diagnosed either the treatments were less effective or we could not tolerate them. It's good news that treatments are so much better, but there are still people around who can look back at "the old days" and who are worried about aging with RD. That's a topic where you don't see enough research. Clinical trials are notorious  for not including people over the age of 65, and also excluding those who have more than one health problem.

With the emphasis now on evidence based medicine that exclusion of the older age group is bound to create some doubts about the best treatment in the future.

In fact there have been studies showing that RD is treated less aggressively in older patients.

Bad as they may be, my bones are better than his bones
Custom apparel by Cathy Beattie

This post is part of a blog carnival with RAWarrior, Kelly Young. There are 13 contributors.

The Twitter hashtag for RD Awareness Day is #TheRealRD

Tuesday, 12 January 2016

Pain: What About Patient Centered Care?

This week I had a hand operation that involved the rearrangement of bones and tendons. In case you have not read much about orthopedic surgery it often involves power tools, and may cause you to feel pain after the procedure is over and the nerve block wears off.

In the past I have accepted the usual prescriptions for percocet and Tylenol 3, but this time I refused them since they make me sick to my stomach. Nothing like surgery and throwing up to make you feel really bad.

The plan for another type of pain relief did not work very well at all. I was given a prescription for a different type of pain pill and told to take 1 or 2 every 3 hours. How patient friendly is that? How could you manage to sleep?

perfect pain killer?

If these pills were so ineffective that they would only help with the pain for three hours that just doesn't seem good enough. What kind of patient friendly dosage schedule means you take pills every 3 hours? I phoned the surgeon about this and he did not even understand the point I was trying to make.

Let's just imagine we were talking to a Doctor like Victor Montori, who has sympathy for what is now known as the burden of disease. I wonder if he might think of a better way?

Burden of disease is crushing

I was about to delete this blog post until I ran it by a few friends. 

This is what Lucy thought: 

"I don't know what it is with pain medication but I think they think we are all addicts. When I had my knee replaced I had to fight for more pain medication in the hospital and then when I went home they gave me barely enough to last two weeks. Thank goodness my doctor agreed to give me more. Another patient at Physio had hardly been given anything by his hospital and couldn't do his therapy. It was really awful - he didn't have a GP to go to for help. 

I always meant to talk to my surgeon about this and I will in future as I think it is something they need to look at."

And Joanne agreed to an extent:

"I agree with you on the pain pills and with Lucy's comments. The drugs they give us going out of the hospital are completely inadequate both in dosage and in # of pills. I got too little after my hip surgery. Only enough for 3-5 days. I don't know the equivalence but after the hip experience, I asked my GP for a prescription in advance of hand surgery and had plenty of pills. Even that didn't get rid of the pain entirely. 

The fact that my pills had acetaminophen in them was also an issue because it would have taken me above my daily limit. If I have any more surgeries, I will request drugs in advance from my GP. From 3 surgeries, it doesn't seem to me that the hospitals will bend on this issue. I hope your pain begins to subside soon."

Whatever happened to patient centered care? Is it any wonder that patients don't always follow instructions?!

When you obviously have pain, beyond a shadow of a doubt, you can't even get adequate pain relief. That adds even more weight to the previous post about the difficulty of getting pain relief with chronic pain.

Saturday, 5 December 2015

Aging and Pain Pills: Julie's Viewpoint

Pain medication is a big issue for those with chronic disease. Julie a US member of our support group has some complaints, based on her experience:

"Someone who doesn't know what real pain is has made the rules.  They are more worried about drug addicts than patients in pain.  It is difficult to find a doctor who will prescribe pain pills and they keep close tabs on the number of pills a person can have.

They were trying to stop the "pill mills" where controlled drugs were being sold to addicts and they closed down several "pill mills" in Houston.   BUT - at what cost to people who really need pain relief?

Now, it is very difficult to get pain medication.  If a person goes to a Pain Clinic, they make a
the person fill out pages of forms - some forcing a promise that they will absolutely not get pain medication from any other doctor or place.  There is also a page telling people to be very careful with their pain medication because if a person would accidentally lose or somehow destroy the pills (by dropping them on the floor or in water etc.)  they will NOT be replaced.

A drawback of the Pain Clinic model is that patients have an extra appointment every month for testing and to get another prescription for more medication.  A Big Hassle! and even harder on the elderly and the poor.

My Internist prescribes the lowest number of pills (Hydrocodone) at the lowest dose for me.  He doesn't really want to do that and he said he only has 2 patients where he will write a controlled drug prescription.  He said he only does it for me because I am a long-time patient, he knows that I suffer from RA and that I am really in pain. I am hopeful that he will keep doing that as I don't want the hassle of having to go to a pain clinic every month, now that I am 80.

Pets can help people deal with pain

The insurance companies keep tabs on what and when and how much a person can receive and they won't let any controlled medication be filled early - it can be filled 3 days before a person has their last pill. (So if you need pain pills forget that vacation)  This is what my pharmacy told me.  Other pharmacies might have different policies.  I do know my doctor will not re-fill a prescription before 30 or 90 days are up depending on the medication.  The prescription has to be on a green prescription paper with all of the doctors drug numbers on it and it has to be taken to the pharmacy in person and handed to the pharmacist.  It can not be telephoned in or re-filled any other way.

Many of the Pain Clinics will make people try other methods to ease their pain before they will prescribe medication.  This situation really isn't fair to sick people. Obviously it will help some people to cope with their pain using less medication over time, but we all know that "One size fits all" is a fantasy"

It also makes you wonder why insurance companies have taken on an enforcer role in the war on drugs. I get the feeling that they feel more able to take care of my health than my doctor can and I feel that is wrong.

Most of these are going back to the drugstore - wrong strength, now off the market and inferior generic

Monday, 30 November 2015

Patient Relations

Here's the background on the Patient Relations offices you may have noticed in hospitals in Canada:

“A well‐established patient relations structure and process, supported by the right personnel, is key to identifying gaps between patient expectations and experiences of care, and managing perceptions of patient expectations and quality of care.” From Excellent Care For All Act

To strengthen patient relations processes in Ontario’s hospitals... they are required to have patient relations processes in place and make information on these processes available to the public. Regulation 188/15 adds to these requirements; specifying minimum standards regarding the retention of data, providing standards for keeping patients or complainants informed, and ensuring that hospitals have a specific patient relations process.1

I was lucky enough to attend a conference where many patient relations professionals were sharing information about their work.

Some had inspiring examples of meaningful engagement with patients and family caregivers, where they were regularly collaborating with them on projects and acting on patient ideas and input. 

Many talked about plans to start involving patients in their hospitals but had not yet started to work on it. In some cases they were very busy just keeping up with their everyday work. In other cases senior management (or other staff) was not behind their efforts.

They presented lovely charts and graphs to their peers showing the types of patient issues they had to deal with, and how quickly they were able to resolve problems were presented. But... after hearing my friend's story about a patient issue that she wanted to have looked into, I wondered how they define resolution. When she asked her hospital contact for a progress report on her complaint she was told her case was closed, though she had no word of any results or consequences.

Patient Relations can't help this 'patient'

Despite sincere talk of being patient centered, there were a few comments I heard that sounded tone deaf like these two:

We'll "give" you (ie patients) decision making authority as long as it's a consensus.

And the idea of staff deciding "What is it that you want these people to say?" in the area of changing the conversation in making films for internal staff training makes sense in one way, but can also be interpreted just the way it sounds.

On one occasion I tried to compliment the hospital on a positive change but my call was not returned. The only time I made a complaint, about an issue that cost me an extra year on a waiting list, I was unhappy with the result. 

Patient experience is recognized as a method people use to determine the quality of their care, and the feedback that patient relations offices get reflects the experience. The insight it gives can help to drive change and quality improvement. 

I learned just last month that Accreditation Canada has made Patient and Family Centered Care a key standard starting in 2016. The presentation I heard at their workshop was impressive and their resolve was unmistakable.

The big difference, and you may have seen signs of this already, is that instead of doing things 'for' and 'to' patients, they will now focus on doing things 'with' patients. That means we'll see more information sharing, partnership, participation and collaboration.

If you're a patient who thinks things could be better in health care there's no better time to try get involved personally. The door is opening up for us as patients, or as family caregivers to make a difference.

1. From Health Quality Ontario Striving For Excellence in Patient Relations Processes in Ontario's Hospitals

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.