Monday, 24 September 2018

Dealing with Chronic Disease Can Get Old

This post is partly crowd-sourced from my online support group that's been together through thick and thin, even losing a few members from complications as we have talked over the years. Speaking for myself, writing this blog and choosing the pictures my old friends shared in the past made me feel decidedly better today.

Here's what they say:

Tricks seem to imply that you are fooling yourself or your body, and I just don't see that as a working strategy. With the brain in charge - it's a losing battle. So, the tips are better then the tricks.

I think eating ice cream would be appropriate.

We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at last one serving of a fruit or vegetable and usually more with every meal.

Aging –you’re not old - I have read that 65 to 75 is "Young" old, 75 to 85 is "Old" and 85 plus years is "Very" old.

The above comments are from Dolly's mom.

We're not rewarding to our doctors.  When we start to have rheumatoid disease longer and things start to pile up....there isn't much that can be done. One of the reasons I haven't gone to another rheumy is that 30 plus years with r/a is a long time.  It’s all progressive.

I feel invisible a lot of the time.  I think you don’t get much attention if you're solo.

From Henry's foster mom

Some of us are getting a little tired. How many rounds is this fight? I am so tired of fighting for things now. I really feel like just giving in.

From our member in New Jersey

Not every patient is interested in their health care. I think more should be available to educate people on the necessity of taking responsibility for their own health. "No one cares more about your health than you do" is what I would tell them.
So on one hand you have the world where the doctor is seen as "God" and all knowing, and on the other, many people who have a variety of expectations of their doctor, including wanting to be part of the treatment process.
Then there is the minority who want to be really involved including having a voice in decisions that affect the health care system, and the policies that govern it. 

Even though some see them as "Not the unheard voices" they are still essential to pave the way for more patients and caregivers to take on a larger role. 

So I'd like to thank all the people who go above and beyond their expected roles, for doing the sometimes exhilarating and often thankless job of being patient and caregiver advisors.

To all the ants toiling away in models of collaboration

This blog is part of  RD Blog Week. See more here.

Friday, 20 July 2018

Being a Patient Advisor: One of the Drawbacks

It has been an illuminating time recently on social media, hearing patients and caregivers express feelings of frustration, and of being used and vulnerable.

It's likely they too have been described as "Expert Patients" or "Professional Patients" to their faces, and in referring to people like them. I find the implications of both expressions offensive in their suggestion that I am taking a space where an 'unheard voice' should be sitting.

Just this week in a tweet chat a participant said a _ xy _ _ initiative will have failed if we simply give greater voice to those who already have loud voices, and I doubt he was referring to researchers, professionals, or funders

I did not choose to become a patient; none of us do. I developed a chronic disease 30 years ago that continues to this day and has seriously damaged my bones and joints. I get involved with issues and causes and try to contribute positively to finding solutions or answers that will effect change because I know many system weaknesses and pressure points first hand.

Now that I have developed more knowledge about the health care system I can deal with it better on my own behalf and can also be involved in efforts to improve the situation for other patients and caregivers.

But as Dawn Richards said in her BMJ patient blog this year, the patient is also a person.

In my deepest self I am not a patient, but in any interaction with the health system, that's my assigned persona. Being the 'Expert Patient' that I am considered to be does not mean that I have stopped having my own inconvenient personal encounters with health care.

a) Being knowledgeable does not mean I don't need medical help.
b) Expending my energy as a volunteer does not mean I am healthy.
c) Spending hours every week reading and learning enough to be able to follow and contribute to high-level conversations about system issues should not be something used against me.
d) It is not the job of patient volunteers to make the volunteer pool diverse and inclusive.
e) Not everyone who would like to volunteer is able to. 

It's ironic that those who are least able are often the only volunteers around the table, giving their own time to benefit others.

Another issue is patient engagement as highlighted recently by Isabel Jordan @seastarbattitta. Her story of being profoundly disregarded after working on a project as a team member, and then being ignored can be taken as a lesson in how NOT TO engage patients.

When I began to be involved as a patient partner, or as a conference invitee I was excited and happy just to be there. After years of experience my sense of tokenistic involvement is a lot sharper. One of my older posts is about the Authentic Patient Voice and how much I wonder what the main agenda items at meetings would be if patients choose them without being 'guided' by well-meaning professionals.

It is disturbing to see patients characterized as being responsible for overcrowded emergency departments, as seekers of pain treatment, as pushing doctors into prescribing unneeded antibiotics and tests, and as non-compliant with medications. It only makes sense to involve all members of the team in creating solutions for health system problems, and that team includes patients, who are actually paying for the whole health edifice as taxpayers and as users of non-covered services.

When volunteering as a patient advisor I don't like being called an 'expert patient' or 'professional patient'. Gaining experience with the health care system was never my goal. The work involved in being a patient is a real burden.

If #patientengagement specialists look at me and wish I were an unheard voice, rather than an older white woman who is retired, why don't they work harder at inclusion? They could reach out to communities that include the people they would like to see, and invite them to participate, or at least ask them about methods of participation that would make them comfortable with the process.

If researchers or organizations feel their initiatives will have failed if they simply give greater voice to those who already have loud voices, what are they going to do about it? 

Blaming the people who are helping you now will not attract people with different viewpoints or backgrounds. As a person who spent 20 years recruiting I know it takes time, energy, and innovative strategies to include people you seldom see represented around the table.

Twitter persons who informed this blog post included: @to_dpr @solidfooting, @PFEAMorin, @amaybee, @couragesings, @seastarbattita. I am @anetto

Monday, 16 July 2018

Getting Involved as a Patient Advisor: The Hackathon Files

In the middle of October I was a judge and patient advisor at a Hackathon put on by the Arthritis Society at the MaRS Discovery District in Toronto. #ArthritisHack

I had never been to a hackathon before, and to be a judge on my first experience was worrying, but one thing I know a lot about is living with arthritis, apps for chronic illness, and patient engagement. That helped me to take the step into the unknown.

You might wonder what actually happens at a hackathon and how a patient or caregiver can get involved. I found out it's all about design, like a race to produce a great solution for a problem in the space of a weekend or less. Those involved in doing this include software developers, graphic designers, interface designers, project managers, and in this case rheumatologists and patients who have arthritis as experts on the subject of arthritis.  

A Hackathon incorporates a user-centered-design process, so the creators start by talking to the intended users of the applications they plan to build.
Hackathon themes

The first night got off to a great start with introductory speeches from the sponsors and #HackingHealthTO. Patient group leader Dawn Richards was there from CAPA (Canadian Arthritis Patient Alliance) and spoke about arthritis and the issues involved to put the disease into perspective for the teams and sponsors.

CAPA VP Dawn Richards inspiring the teams

Some of those attending as mentors were good friends who I have met through other engagement activities.

Karen and me above; Lene Andersen of The Seated View blog in lower picture

There were 11 teams there using their skills and creativity to produce the next amazing app. Both patients and doctors gave advice about what was practical, desirable, useful - what would make the app something that could help people.

Mike Stone of Lilly Canada and Dr Rachel Shupak

Dr Philip Baer with Isabel Vezina of Hacking Health and Michelle Mika 

The Arthritis Society held this event with sponsors Eli Lilly Canada  and Cossette. The Lilly team produced the food and display below to illustrate some of the problems involved with rheumatoid arthritis. The prizes for winners of the competition include coaching and marketing help to the winning solutions into shape to compete for people's attention.

Opening jars and lifting cups are other issues with joint damage from RA

It was great to see so many people pitching in to help people living with arthritis. 

Here's everyone involved in the Hackathon - the big team

And here's a picture of the winning team- Team Kizuna

The winner was an app that is all about community. You'll have to wait for the future to see it in action. Keep watching The Arthritis Society website.

Janet Yale of The Arthritis Society

And Janet Yale, the CEO of The Arthritis Society, gave us a final goodbye with thanks for all of the great ideas and great results.

This post also appeared in the Canadian Arthritis Patient Alliance Newsletter December, 2017

Thursday, 29 September 2016

"I Had a Nightmare Dream"

Here's a conversation about pain between two good friends who gave me permission to use their words, and whose names are changed.

"I had a nightmare type dream where I was in a car with others and I lost control on a curve.  I regained control quite quickly and no one was hurt.  Now that's quite a telling dream, huh?"

That's what one of my support group friends reported when she woke up in the morning with her feet and lower legs hurting like the dickens - she said they were "on fire". So she took her pain med and looked forward to feeling better because she had a busy day planned...

With a forecast for strong thunderstorms, a high of 90 and very high humidity she blamed some of it on the weather. She said "I wish my doc would let me take more medication on the bad days but he is worried about the changes in the brain that opioids make."

"Oh well...when I hurt enough I guess I will complain louder."

Gail replied "I do wish the doctor would listen to what you’re saying about the pain Robin. I’d say, what about what the constant pain does to the brain and how you feel in yourself?

Gail went on to comment that she had one of those days yesterday where the pain meds just didn’t cut it; by the afternoon she felt awful, stiff and painful and the fatigue hit super hard. I held off but relented with extra pain meds by 6pm and my evening was much better. Does anyone else have days like that where you’re literally counting the minutes to the next pain med dose?" 

Robin told us "Out of the 24 hours I get relief for approximately 8 if you consider how long it takes for the med to reach all the brain sensors for pain and then the time it begins to start back to "normal".  I was counting the hours yesterday to when I could take the second. 

Exactly Robin, replied Gail. Which pain med are you on? I’m on Di-hydrocodeine and that takes 50-60 minutes to metabolize in the liver. I then get between 4-6 hours before they wear off. I do know what you mean too about how fascinating it is, the way one day your elbow for example can be in absolute agony and then next day, nothing! Sometimes hour to hour is like that, it’s a crazy disease for sure

I am on hydromorphone 2mgs.  I feel better today. So I was able to sleep from 7-9 but it wasn't refreshing sleep.  I'm not sure I will ever have that again. 

I know my friends use a variety of methods to stay mobile, to distract themselves from the pain socializing and doing creative activities and yet this is not always enough. 

Another member of our group takes a very low dose pill usually only once a day, and yet despite the fact that she is stable and also almost 80 she is forced to make an extra visit to the doctor every month to get a new prescription. he feels he is doing her a favour because she is his only patient on any opiod at all and if he did not do this she would be forced to go to a pain clinic.

Things are getting very difficult for patients with chronic pain who just want to be able to function for at least part of the day. Every drug we take has an inherent risk of course. If I could not take Nsaids I don't know what I would use as an alternative, and yet Nsaids commonly cause cardiovascular and stomach problems, especially as you age. The alternative medications for pain are all risky and we are being warned about almost every painkiller.

It seems that patients are more and more expected to find their own remedies and many of us are very skilled in using every strategy we find already. Where do we go from here?

I actually saw an article where orthopedic surgeons were discussing cutting back on strong painkillers. I will admit I could do with less than a week's worth usually, but don't even try t talk to me about mindfullness two days after one of my joints has been fused or reconstructed.

This post is part of RA Blog Week. More blogs on this topic can be found here.

Tuesday, 27 September 2016

A Dfferent Route To a New Treatment

My road to a biologic drug was different than most I think. Building on my experience as an active patient who often searched for information online, I found an educational resource for doctors online years ago. They are also called CMEs which stands for Continuing Medical Education and have changed in format now.

Though they are meant for doctors, anyone could participate and the format was great. After every few pages there was a quiz, so I could check that I was absorbing the information.

That was the way I learned about the results of the Premier Trial and others that were similar. The conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage. I had already seen what joint damage could do and knew I wanted as little as possible. 

After reading these conclusions it seemed to me that my life could be better with more aggressive treatment. With physical symptoms of fatigue and inability to expend energy my life was limited. After working all day I had no energy left for any other aspects of life and I spent my weekends resting and visiting sick relatives. I felt like a doll lying in a room in a dollhouse when there were no kids at home.

Well-being is not something that my doctor ever asked about in his surveys that included the Rapid 5 ( a quick way for doctors to judge disease activity) and HRQL (Health Related Quality of Life)  measurements. Fatigue was not part of them.

Now we see Patient Related Outcomes (the results patients think are important) becoming far more important in treatment decisions and clinical trials for chronic diseases like rheumatoid arthritis. This change is recent and similar to 'treat to target' which is another phrase you may have seen online, far more than in doctor's offices.

I was convinced, but next I had to convince my doctor to take another look at my health. In my experience if you show up looking presentable and a bit perky at the Dr's office they think you are doing fine. Getting that re-assessment is difficult if you seem to be coping adequately. As my first GP (who missed my diagnosis) used to day "If it's not broke, don't fix it."

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If the new DMARD had worked it would have been great but it didn't. 

Now I am on a biologic. With it I have more tolerance for exercise and I can do more in a normal day. It did give me a better sense of well-being so I am happier and I think I am healthier too.

For an interesting read have a look at this paper that discusses the qualitative or narrative responses that show the outlook of patients - that is the experiences, attitudes and expectations of people like us about the information they receive before they start anti-TNF therapy

I really liked the paper - it sounded like me

This post is part of RA Blog Week. For more on this topic click here