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Wednesday, 7 January 2015

Power Equality: Not Even on the Radar

Late last year I was pleased to be invited to attend a conference called "Reaching the Summit: Leading the way from Interprofessional Education to Practice". Having patients included with educators and practitioners meant that the healthcare stakeholders sitting around the table were representative of more of the members involved in the health team.

It was a little disconcerting when I looked back at the list of Summit Registrants prior to writing this post and saw that under the title and the occupation columns the patients were all listed as "Patient Guests" in both columns. That seems to imply that our place is not secure - maybe it isn't a given that patients will always be invited to participate.


We're making the right connections

At the event a large part of the afternoon was spent in breakout sessions, each one with a patient representative. The teams were composed of people working in hospital administration, in medical education, clinicians, allied professionals and, as at the IDEO Design Challenge, the variety of opinions led to strong and useful conclusions and strategies.

At one point in the session I commented that the very words 'inter-professional collaboration' on their own seem to exclude patients. With that as the conference description I did not feel originally that I belonged in this discussion.  It was wonderful to hear that others at the table agreed with me. In fact the facilitator of our session had written a paper on that topic titled Interprofessional jargon: How is it exclusionary. Cultural determinants of language use in health care practice!

With exclusion on my mind, I transcribed this sentence from a webinar on YouTube on the topic of Patient and Family Engagement:
"In summary, we can think of patient and family centered care as the umbrella term for the approach or, as then is implicit, the container concept that encompasses the elements and arranges the activities that come to define patient engagement, towards the ultimate aim of improving patient experiences and outcomes."

It does not sound like "Let's engage the patients!" language to me.

Here's a definition of Patient Experience from The Beryl Institute:
"The sum of all interactions, shaped by an organization's culture, that influences perceptions across the continuum of care."

I wonder if healthcare organizations give much thought to engaging patients and families so they can provide input and influence decisions before they are made.

                       It takes co-ordination to make all of the components work together

This blog post by Dr. Matthew Katz, on the Mayo Clinic website, E-Patients Deserve E-Doctors: Addressing the Needs of Both to Make Healthcare Better for Everyone makes great points.  Here are a few quotes from his excellent post:

"Empowering patients and doctors ensures they can work together. If patients and doctors don’t stand up for themselves, other stakeholders  (e.g. hospitals, insurers, industry) may unwittingly make things worse.

Thoughtful, vocal patients, caregivers and doctors should stand together. Even when we disagree, we can respect our differences while working toward solutions, both in clinic and for the health care system. We need each other. And if we support each other, the entire health care system will be the better for it."

I encourage you to read the whole post. The idea  of doctors and patients as natural allies seems like the right choice to make.


Wednesday, 31 December 2014

What Next 2015?

Last year on New Year's Eve I was thinking about what my hopes were for the coming year - they were simple but seemed like stretch goals that would take years to achieve.

My ambition for 2014 was to be a Medicine X ePatient Scholar and to have a Walking Gallery jacket done by Regina Holliday. Both of those things happened in 2014, and I appreciate and would like to thank my social media and online friends with being an amazing help throughout the year.

MedX was inspiring, exhilarating, intense and a huge chance to grow as an advocate and connect with like minded people. The jacket was delivered to Palo Alto for the first day of the MedX conference. So much happened in those four short days.

Here's a picture of the jacket - it tells the story of my first years with RA and with no diagnosis.

 
Walking Gallery jacket by Regina Holliday - It's A Mystery
 
"It's A Mystery" is inspired by my life-long love of mystery books I think, especially those from the "Golden Age" of mystery. The front covers of the books from that time, and the mood in them was unmistakeable. That's the Toronto skyline in the background, with the CN Tower acting as the tent pole, or the beacon.
 
The doctor is a shadowy figure - if he knew the diagnosis it didn't help me much. His final piece of advice: to take 10 aspirins a day (see the Bayer's Aspirin bottle) and come back in six months, just led me to see another doctor when that didn't help. Regina did a great job of bringing those times to life.
 
There I am lying on the ground with huge fatigue and two little boys, while my feet are so sore I can hardly walk. At the time I credited Diet Coke with the sudden weight loss. The doctor's explanation for the pain, "You're a busy mom."
 
This disappointing beginning to a story of life with chronic illness was what caused me to start to question my role as a patient and my relationship with doctors. With the story laid out so clearly on my back, I can tailor my advocacy message based on the interests of the people at conferences who see the jacket.
 
Since I've been home from MedX I will swear that the idea of the "MedX halo" is not a myth. I've been to six rewarding and interesting conferences since then, and have three scheduled for 2015. Working hard to learn more and advance the idea that the patient voice should be included at the decision making level in health care has been satisfying and the rewards outweigh the efforts. 
 
We're a long way from seeing inclusion as a common practice, but if we work together persistently we can advance change. I like this Margaret Mead quote:
 
"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has."
 
In 2013 the National Forum on Patient Experience did not include patients. In 2014 there were many patients. That was a success.
 
In 2015 there is a conference coming up called Canadian Patient Relations Conference: Making the Invisible, Visible: Hearing the Patient Family and Caregiver Voice. There will actually be one patient in attendance - giving a keynote speech. That should be enough for anyone, right?
 
Being a member of the Society For Participatory Medicine is an excellent way to attempt to keep up with the issues of participatory medicine and patient empowerment.
 
MedX ePatient Scholars & Student Leaders by @Hurtblogger
 
The Society for Participatory Medicine is a 501(c)(3) not-for-profit organization devoted to promoting the concept of participatory medicine, a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

 
 
 
 
 
 
 
 
 

Sunday, 14 December 2014

Christmas Story

Last Christmas was like no other. We watched Saturday Night Live on the weekend before the holiday, and in the morning when we woke up we had no power. Just looking at all of the downed branches outside our windows told us all we needed to know about our prospects of renewed light and heat.

We had a huge ice storm that coated everything in a thick layer of ice overnight. I put on long johns, ski socks and my warmest cosy wool pants as a base layer, followed by 2 pairs of sweats. Of course the top pair had to have pockets for flashlights. It took six layers on my top half just to cope with the inside temperature. 

Backyard Tree 

We stayed home for the duration with lots of clothes, double duvets and candles. Luckily we had hot water and our neighbour has a gas stove for coffee. The bus that normally comes past our house had to reroute because there was a fallen tree branch and hydro wires down across the road for days.

It's been a long time since daylight made such a difference, as in "Hurry, We need to get home before dark, I forgot my flashlight."

Ice is beautiful but deadly

It was Christmas Eve, 2 1/2 days later, before we had light and heat, so we headed out for our planned Christmas dinner with relatives. We started on our trip around 11:30 am, already behind schedule. By the time we picked up our cousin, and his surprisingly large extra piles of things to take along, including a thawing turkey and his walker it was starting to snow again. 

Finally we got ourselves onto the highway and almost immediately the tire pressure light went on and we had to turn back. At a gas bar we called roadside assist - it was a huge relief that they sounded so capable and promised to send a service man within an hour. 

When he arrived and checked the tire he felt that we just had a sensor problem and could continue. Such a relief! So THEN, an hour after the stop, our cousin decided to get a coffee.

As he disappeared into the store we stood watching the serviceman finish up, a young couple joined us to see what was going on. They were delighted to hear that we had a tire problem and had found help. They really did have a flat tire and were grateful to find a possible Christmas angel. The fact that one was still in PJ's might help explain their  joy.
 
Emergency guy at the gas bar

We were all ready to go at last BUT where was Cousin B?
I went after him to speed things up and grabbed his coffee to help him speed over to the car. Only then did he decide to meander into the washroom! What he was thinking all the time we waited I'll never know. So we were all waiting for him and when he came out of the washroom he inexplicably ambled around the store searching of that essential lock de-icer he had just imagined he might need for his own car back home.  Needless to say we were late for dinner.

So many things went right overall:

It was so helpful of the attendant at the Shell Gas Bar offered to turn on the air pump to help us.

We felt amazingly lucky to have Roadside Assist come out to help us on the holiday.


Christmas at last. 

We were so happy to have light and heat, not to mention a cooked turkey at the end of Christmas Day. It tasted even better than usual after freezing in the dark for days.

Having to go to bed when it gets dark really brings home the value of heat and light. It's so easy to take for granted.



Thursday, 11 December 2014

We Need More RA Research!


In 2010 I saw Dr. EC Keystone give a talk on advances in the treatment of RA. It was called "The Most Exciting Time in the History of Rheumatoid Arthritis" and I blogged about it here. I'm still absolutely convinced that things are much better than in the early 1980's when I was diagnosed - we have many new drugs to choose from that are much more effective than the drugs of the past, but I'm not convinced it's enough anymore.

Lately I have been finding research papers that make this wonderful progress look less impressive. For one thing it is disturbing when Low Disease Activity is equated to remission in the decision of whether to reduce or discontinue treatment. In how many other diseases is treatment stopped or tapered when there is still evidence of activity?

This is the way I look at the issue. I have 20 joints in my hands that are checked by my rheumatologist during each visit. He uses the DAS 28 scale to judge disease activity. One finger joint has fused during treatment with anti-TNF drugs and four more of them show moderate activity now. That could result in very poor hand function in the future because 25% of my finger joints might end up mostly unusable. This is not enough reason for a change of treatment. It is considered low disease activity despite the possible results. The reason I do not count my wrists in this equation is that they are fused and no longer function as joints since no movement can occur. 


"We don't see hands like this anymore" Recent quote from rheumatologist


Here is another study that monitors functional capacity of patients over a period of three years and concludes that those who require surgery have worse ability to function. More timely access might help, but for many of us this needed surgery is considered elective and we wait; For others it is not affordable.

This study and the one after it really led me to tackle the topic of lifespan:
Patients with rheumatoid arthritis have better functional and working ability but poorer general health and higher comorbidity rates today than in the late 1990s. This study concludes that the advances in treatment and the attention given in the "treat to target" strategy have been successful with rheumatoid disease activity outcomes. "However the result was just the opposite with regard to overall health and co-morbidities". While the lifespan in the general public has increased, this has not been the case with RA patients.  This makes me agree with the authors that there are still challenges in the treatment of rheumatoid arthritis.

The icing on my non-celebratory cake
Influence of Radiographic Joint Damage in Mortality Risk in a Cohort of Rheumatoid Arthritis Patients: A 20 Years Survival Study
"This mortality gap has increased in the last years since mortality rates for RA have remained constant throughout time while mortality rates for the general population have declined."

These two studies taken from abstracts of the American College of Rheumatology meeting this year agree that while treatment and symptoms have improved the bottom line hasn't budged. Our lives are shortened in the same way as in the past. Biologics have been in use long enough that we should be able to detect an improvement in mortality rates. This is not the case. Of course it doesn't change the lives of any of us on this course, but it does give us a darn good reason to advocate for more research, ideally into why the bottom line isn't budging.





Monday, 8 December 2014

Travel and Holidays with Polly. It Gets Harder With Time

I asked my friend Polly about ways her life has changed, getting older with arthritis. Christmas changes. and when you have to travel by yourself with disabilities it gets harder to do.

"Traveling...what's that?  Its been so long.  Now all of my trips are within a two hour drive and mostly to doctor's appointments.  Don't ask about the food at hotels near the hospital.

When I flew...we would always get a nonstop flight.  Those jogs and short layovers were like a marathon.  We didn’t go if there was no nonstop flight available.  Having to hang onto those skinny railings on fast shuttles to get to your next gate was always a challenge for me.  I think it is Cincinnati or Atlanta that has the buses where we had to walk outside on the tarmac and I had to get up those bus steps.  I could barely lift a leg that high then. Now I know I could not do it. I would be asking for a golf cart at the gate.  


 
Generic airport view (my own)
 
Packing medications is another obstacle. No, I'm not a senior drug dealer, I really have prescriptions....see???   The Enbrel had to go in the frozen ice pack bag.  Carrying all your medications onto the plane is quite a challenge.   And having to take off my shoes to show my arthritic feet.....lovely.  Many...oh I'm sorry's.."you poor thing".


                              a sample of my prescriptions

Disney World.....how do they expect people with our disabilities to get onto that moving assembly line for the rides?    That was a ride before the ride.  I didn’t look forward to trying to coordinate the moving sidewalk with the jump into the cars.  Or climbing down into the Pirates of the Caribbean ships.  Or the lady who did need a scooter in the Big Bear Jamboree who tried to get out of the doors at the end of the show and rolled over my right foot, hit the trash can by the door and almost took out an 8 yr old boy.  I'll take a condo by the beach any day. 

At Christmas, I don’t put a tree up anymore.  Even the easiest are tough and bulky for me.  I have a little ceramic tree that my parents had.  I'm always afraid of dropping it when I get it out of the box.  Almost "everything holidays" has gone to my daughter or the grandchildren. 

Wrapping gifts is totally out of the question.  I used to take pride in my wrapped presents.  Then they started to look like I let a 5 year old wrap the gifts.  No tight corners....fighting with the tape.  Since giving up wrapping, it's been gift cards and money for the family.   

This is the first year I'm not sending out Christmas cards.  It's too hard for me to address all those envelopes and write a little note inside the card.  My wrist starts to ache and my fingers are stiff.  I usually send out about 80-90 cards every holiday.  Stamps are expensive also.  That’s another tradition I'm not carrying over this year. 

 Holidays bring about the snowy wintery weather which is great if you're ten.  But for me, its another obstacle.  I have to pay for the snowplowing and watch my klutzy footing which is bad enough during July much less December.  I try to find rock salt that comes in a smaller and lighter bag. 



 
Now my idea of a fun evening is jammies and putting on my big fat slippers. Some days I do that right after the postman comes."