Patient Preference: Not Always What It Seems

There have been suggestions that we look at the NHS in the United Kingdom for ideas that will improve health care in Canada. I've been told to look at The King's Fund as a source of good directions for goals to help in becoming an engaged patient and for ideas that we could use in North America. Even as I was hearing this I had a recollection of a research paper that I had read in the past and that did not impress me at all.

Here's the link. It's called "Patient Preferences Matter: Stop the Silent Misdiagnosis". I thought this sounded very positive. The patient voice would be heard and their choices would be respected.

But after I read the paper I felt uneasy and unconvinced that this whole plan would be good for patients. The example used to demonstrate the point was 'Susan'. She's 78, has a family history of breast cancer and a heart condition. After a mastectomy which showed clear evidence of breast cancer she talks to a friend who did not have surgery. She elected to slow the cancer with hormones. Susan is sad, and had she but known of the 'no treatment' option would have chosen it. This is called 'preference misdiagnosis' and of course no one knows how prevalent it is because it would be hard to measure.

breast cancer from cancer.gov

The suggestion in the paper is that the doctors of the NHS should be better informed about patients preferences in a general way through surveys and should  present all of the options.

The power that doctors have is very subtle. If my Dr. recommended treatment vs. no treatment and gave me the odds that would inform my choice I would  listen carefully. But the doctor has power in the presentation. We pick up cues in person to person exchanges. The suggestion of no treatment can easily be taken as a recommendation, and we can't all ask our doctors "What would you suggest for your mother?"

It's easy for the patient to tell what response is most desired and to be influenced by the choices the doctor presents. The aim is "Giving the patients what they would want if they were fully informed" But the underlying idea that this is an opportunity for the NHS to save billions of pounds seems as though it should be out of place in a discussion about patient preference.


Julie's opinion:

I have read this ridiculous article before and wondered what word games they were playing.  It sounded to me like they were encouraging people Not to seek professional healthcare and that the patient's "personal preference" should be for the good of the general economy - not the patient.  The conclusions are ridiculous in my opinion.

Gail's opinion

"I really think it’s vitally important that doctors do give us all the information so that we can be involved in the treatment choices. I would never, for example, blindly let a GP/Consultant prescribe me a course of treatment without at least doing my own research and knowing all the ins and outs first. I think part of this is about doctors realizing that our say in our treatment is vitally important, and ensuring we have all the medical knowledge we need to understand why a treatment might be the best for us, not just to be told that they are going to do this and that’s all there is to it.

We need all the options, not just the cheapest or easiest for them to accomplish."

The final point the article made was about the pluses of  getting patients involved, particularly the one that if patients knew all the choices they would be less inclined to have aggressive treatment and the NHS in the UK would save a bundle of money.

They imagine lots of people in their 70s and 80s saying "No surgery, radiation, chemo etc for me. I'll likely die of something else first""

My friend's mom is an equivocal example: For her it worked fine - she is a notable exception. Breast cancer at 83. Dr did lumpectomy - told daughter it was malignant but in view of her age he would not suggest radiation or chemo. He told his patient (her mom) they got it all. The Mom thought she ducked it and did not believe it when her daughter said it was malignant.

Now, 20 years later, she is 103 and still lives on her own. Lucky it was a very slow growing cancer and the lie to the patient had no ill effects.

Arthritis Affects More Than Your Body

In the post about "Changing Shoes" Dr. Backman showed how that image came to symbolize what we've lost with inflammatory arthritis.

That led me to think of writing a post about the psychosocial aspects of living with Rheumatoid Arthritis, only to realize that this is a topic for a book, not a blog post. Still, not starting at all is accepting defeat too soon. 

Here's a relevant paper that I found among the first results of a search - Arthritis and Pain. Psychosocial aspects in the management of arthritis pain. It's not new, but when was the last time you saw anything happen fast in arthritis, with the exception of flares? The study is a perfect follow up to the shoes metaphor since Dr. Backman wrote this paper too.

To start with a definition and a direct quote from the paper:
"psychosocial factors refer to two dimensions of experience: the psychological (cognitive, affective) and social (interacting with others, engaging in life activities)".

The impacts that arthritis has can be seen in all parts of our lives, but pain is a huge topic that we are not able to ignore. It can result in what used to be small tasks, like getting dressed or washing your hair, becoming more difficult. Many activities start to take more thought and effort. 

Pain can also be difficult to predict or explain when others can't see it. You can look fine but it gets more difficult to make plans and commitments. It takes a toll on your self esteem too when pain is physically and emotionally exhausting and overwhelming.

Arthritis has impacts on our families and on our communities too. It was a huge change to my family when I was suddenly too tired and sick to be consistent in what I was able to do as a mom. I know it had an effect on my children.

With my husband, I worry. I saw the toll it took on my Dad and my father in law when they had to assume the role of caregiver when both my mother in law and my own Mom had health issues late in life.

The bulk of the cleaning and shopping fall to him now, and when I was too tired to socialize after working a full week, he also missed many get-togethers.

It's a balancing act

In my work life the stress was more a pressure to achieve results that it was physical, but that was in the job I found after it became evident that working full time in a bank took too much physical effort.

What many people find is that their whole lives change and dealing with illness and changes at the same time is very challenging.  I'll let Julie talk about some of the changes she has seen in her life.


"I think the biggest problem that I have socially is not being able to plan much in advance.  I don't know how I am going to feel on any certain day.  Sometimes, I will accept invitations with the understanding that I might not be able to make it depending on how good or bad I feel that day.

 

Clothing and shoes is also another consideration.  Trying to find something that looks kind of dressy and nice while wearing really clunky, orthopedic type shoes is a problem.

 

I try to never plan anything for the morning before 10:00 a.m.  It takes me that long to eat breakfast, take my medications, get dressed, etc.  I have to plan to go slow in the mornings - so no early morning socializing for me anymore.

 

When younger, I used to be much more sociable, but I have to limit the socializing  now.

 

I think it is all about knowing your limitations and accepting them".

Julie's outdoor cat, Grover

Changing Shoes: The Impact of Arthritis on Self Identity and Roles

Dr. Catharine Backman is a Professor and Head of Department of Occupational Science and Occupational Therapy at the University of British Columbia and a research scientist at the Arthritis Research Centre. She got the biggest response on the #eROAR twitter stream talking about her research on ways arthritis can change your self-identity.

Sam Bradd's graphic depiction of Dr. Backman's talk

Dr. Backman has done two studies about self identity and role changes, and said the most powerful example of the loss of self was the shoe metaphor. "We lead storied lives and the narratives and metaphors we use help us and others to make sense of our experiences."

"Changing shoes" represents not only a physical adjustment to accommodate pain, but also part of an internal process of reshaping identity. It is a very constant symbol of loss of professional self, stylish self, working self. Women eventually "gave up" their shoes and found a new sense of self or an identity no longer represented by the old shoes"

One of the contributors said that if you were more sedate and always wore granny shoes this issue may not turn your life around, but I don't know anyone under 50 who feels like that. When I went to a shoe store looking for style and comfort at the onset of arthritis, and they showed me the granny shoes I almost walked out (almost cried is actually more accurate). I ended up with green leather lace up boots and that helped.

These shoes are not cool. Will never buy shoes like these

Part of your life is gone, it's an internal process of reshaping identity symbolized by shoes.

.@cath_back at #eroar: how can the experience of living with #rheumatoid #arthritis change how people view themselves?

Important to share stories of how people came to transition to new identity with #arthritis #eROAR @arthritis_UBC

"Flat shoes meant pants and never wearing dresses...my life became different...after a few years RA just wasn't getting better"

Experiencing #RA - a transition story: Giving up steel-toed boots = giving up the job. Flat shoes = never wearing dresses #eroar  ARC

Very true! @anetto: Shoes is a transition story, and it's not a transition people want. #eroar@mettamarillee

For women: the type of shoe worn mirrors the life being lived> high powered work/ special occasions all accompanied by elegant shoes. #eROAR

Metaphor of changing shoes represents many losses occurring as part of living with #rheumatoid #arthritis #eroar

@Arthritis_UBC @Bonnycastle @nxtstop1 @cath_back Finding like minded people a big help. They're in mourning too for cool shoes

Past blog post of my own about shoes and life changes  http://yourgoldwatch.blogspot.ca/2013/01/cry-me-river-of-shoes.html …

@Bonnycastle @nxtstop1 huge adjustments to 'who I am' - @cath_back suggests finding like-minded people via online groups/blogs could help

You all just gave me my next blog post idea. I have so many pretty shoes mourning in my closet! Along with outfits. My closet cries! @RareCandace

@Bonnycastle @Arthritis_UBC  Oh how wonderful ~ life : turning lemons into lemonade

MT @sarahlance: @nxtstop1 @maryadevera I have arthritis & plan 2 hike again. worry re perception we get as person w/RA,stereotyped...

Reading your stories makes me glad I can still look like I'm in college, so flip flops, flats, boat shoes. I'm very "Miami"


“@AfternoonNapper: MT Oh, ladies... this has been a HUGE thing for me. Would love to discuss. In a meeting right now though.

I spy a discussion about shoes. My inner fashion diva gushes. I had to give up heels after DX. Too dangerous/painful! @RareCandace

#eROAR Putting old shoes away/giving to charity carries great meaning to 'Who I am' - transitioning to new identity with #arthritis

Not always a bad news story, people find new shoes, new identity, new role, including advocate #eROAR @maryadevera

Shoes are part of our foundation. Changing is difficult-who am I now?. #eroar

Dr Backman's research about Changing Shoes really resonated. Felt so much "less" at professional meetings in ugly shoes #eroar

Changing shoes...represent profound loss of sense of self in rheumatoid arthritis #eROAR

Help seeking process. It's so hard to have to ask for help. It is part of identity change, along with shoes me

@nxtstop1 Yes, agree. My shoes are very ugly and it was (and still is) an issue though less now

Issue of shoes and arthritis: uh oh.... my issue :( have to wear low heel shoes,try to make stylish (gone are the stiletto days.. lol) #eROAR  @nxtstop1

What do shoes and family dinners have in common? Metaphors in rheumatoid arthritis patient experiences.

Implications of the research:
from Dr Backman's slide.
"Appreciating how seemingly small changes carry great meaning with regard to one's identity may foster more effective patient-provider communication and client centered practice.

Yes, shoes are a big deal to many! but more importantly, they represent some poignant losses that accompany chronic illness".

I can see this happening myself in some relatives. My mother in law just could not give up her impractical shoes after she became ill. I've had a long time to change my own life and adjust to what I still call ugly shoes. It can't be done overnight, and yet we were all very impatient when she stubbornly refused to change. Not many women want to wear "sensible shoes" and, as Preston pointed out later in the day, neither do men.

Coping Through Adapting: Not Quite the Same as Doing Well

A few years ago my rheumatologist used a computerized patient reporting system on a trial basis. Patients were asked to fill in a detailed questionnaire at home the day before their appointment. I'm sure it was useful for the doctor to see a graph of people's progress over a period of years. I was very enthusiastic to see my chart take shape as time went on and to be able to track the changes in my reported health. The link to the chart is similar to the one I used but not the same.

It took a while for me to notice how little change there was in some areas. With rheumatoid arthritis (RA) I could see changes in pain, sore and swollen joints, and activity levels of  RA. What didn't change was the global assessment and I came to realize that it would take an amazingly good or a shatteringly bad result to change that marker at all.

Known as a homunculus. RA version. Hands and feet exaggerated because of numbers of joints affected

The other area that did not seem sensitive was the health related quality of life (QOL or HRQOL). Over my whole time in this reporting system there was no significant change. Minor variations may have been connected with how literally I read the questions.

There were 25 statements to determine QOL which were rated on this scale:
Sample question. I can do chores such as vacuuming and yardwork...
Without any difficulty
With some difficulty
With much difficulty
Unable to do
Not Applicable

There are many things that you can do more easily by adapting your activities, products or the methods that you use to do things.

Some examples of this:
Opening car doors - Just shop for a car that has doors you can open.
Turning faucets off and on - Buy a lever-style tap
Cut your meat - Use a sharp or right angled knife
Lift a full glass or cup to your mouth - get lightweight or plastic glasses and cups
Open a new milk carton - Stop buying milk in cartons
Dress yourself including laces and buttons - Fewer buttons, ditch the Spanx, stop wearing tight pants where you have to force the zipper up and the button fights you, try velcro-closing shoes.

I'm sure you see where this is going. By making a myriad of changes in your life and habits, it looks as though you are maintaining you QOL. In a sense you are maintaining it because change is not the same as loss, but these changes make you feel that control of your life is going to the disease. None of the lifestyle alterations feel positive when you have no choice but to adapt.

Using a working splint helps me to cope with typing for a long time

So on the chart your condition looks stable, but in truth you are changing your habits in so many ways and your life is so affected by RA that you barely recognize it anymore. I say the measurement process is flawed.

Another item missing from this system was a measure of fatigue, which is very common in autoimmune diseases. It makes you wonder about the extent of patient input into these patient reported outcomes. Who is better than a patient to describe the outcomes and issues they deal with daily?

One article I found very interesting was titled Patient participation in psoriasis and psoriatic arthritis outcome research
by Maarten de Wit et al. Prior to the 2013 GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) annual meeting a literature review was done to confirm levels of patient involvement in previous outcome level development. They found 63 articles related to 26 outcome measures and only one described any patient involvement in determining outcome measures. This 2013 meeting was the first time there was an official patient presence at the meeting and it was described as "an important first step into incorporating their voice into GRAPPA's research agenda".

Amazing what literature reviews can tell you. I'll be looking for more, since it is hard to believe that psoriatic arthritis is the only disease area where the patient voice is missing in something as basic as outcome measures.

There's another post on this topic Dropping the Ball on Patient Outcomes?

Patient Safety in Hospitals. Could Patients Help?

When I returned from the Medicine X Conference at Stanford I felt empowered as a patient. Meeting so many people with healthcare ideals that were similar to mine made me feel as though anything was possible. Once I got back I saw an invitation for patients to attend this year's Patient Experience Conference. That was one in the "win" column - last year in social media there were complaints about the same conference for having no patients in the room. This year the policy changed, in part due to sponsors I'm told.

Yet in hospitals as a patient I often don't feel like the advocate I am. I don't feel empowered - I do what I'm told to do. I would like to see a forum or some route for input into the Safety and Infection Control practices, but though I read the newsletter, newspapers, emails and even the signs posted looking for volunteers for mental health, depression, bone health, migraines etc, I see no way to join any discussion of safety and infection control in a particular institution.


As an example of an issue, the idea of walking barefoot on a hospital floor would not seem healthy to many people and yet I am asked to do that regularly. It's an ingrained habit not to rock the boat. Friends in my online group relate similar experiences, like Julie's at her hospital, when the CT tech wanted her to lie down on a sheet that did not look clean. She felt like taking a dirty sheet in to them with a footprint on it and then a clean sheet to show. the difference.

I would argue that no one is perfect, and that try as they do, the infection control committees could use input from patients who sit there sometimes for hours on end observing what is going on around them and worrying.

There are many more examples now of hospitals listening to patients and those are steps in the right direction but I would like to see them all on similar paths.

Web, Apps and Wearables: Tools For Joint Health

The eROAR webinar on Saturday is an annual event presented by the Patient Advisory Board of The Arthritis Research Centre. The broadcast went by so fast it was hard to absorb all of the facts, so I hope that looking at it again is useful.

Dr. Linda Li was one of the speakers. She spoke about apps and wearables and their possible use in improving joint health. Sam Bradd did a wonderful job of using his skills to turn the speaker's presentations into art and below is what Sam drew based on Dr. Li's talk.

Picture by Sam Bradd, graphic recorder.

Wearables and apps used in healthcare are a very hot topic, and I saw them in evidence at MedX in Stanford among both attendees and exhibitors. I thought that the Lumo looked interesting. It's a small device that vibrates when your posture needs adjustment, Mostly though, when I measure any aspect of my health, it's an issue of whether or not my favourite jeans are too tight, just as Susannah Fox has been quoted as saying in the past.

Dr Li takes a more scientific approach, starting by telling us that the future is here. In 2014 'wearables' are expected to generate $3 billion in sales as they move from technology enthusiasts to everyday users. With this ability to collect minute to minute information and pair it with a mobile device there is great potential to help people be active.

Not many people use them yet. Dr Li suggests use of exercise to help in osteoarthritis (OA) to improve pain and function, weight loss to decrease symptoms, and acetaminophen as the first line pain medication.

Studies like the Canadian Community Health Survey have shown that large percentages of people with OA do not meet guidelines for physical activity, which call for only 150 minutes per week.

Why is this the case? Lack of motivation is number one. When you are in pain it takes more effort to remain active. Other reasons for inactivity which people give are doubts that it will work and lack of professional advice.

Dr Linda Li and partners in the Arthritis Research Centre and other funders, are in the process of recruiting for six different studies, some in osteoarthritis and some in rheumatoid arthritis, lupus and in indigenous communities. You'll be seeing more results coming from her as this data is analyzed.

Activity trackers are looking more attractive to me as time passes. It seems there is more attention being paid to them as a way for people with chronic health problems to improve activity levels. The call for 10,000 steps a day is being modified as usage moves from the very healthy to the not so healthy.

Here is the text from one of Dr. Li's slides that describes a physical activity counselling model. This is what is happening when people join one of her current studies.

1.Physiotherapist provides information on physical activity

•A brief education session

•Goal-setting

2.Fitbit Flex – an activity tracker

3.Physiotherapist reviews physical activity with participants

•10-minute weekly phone counseling

•Progressively modify the participant’s activity

•Patients may email if they have questions

A tweet about Dr Li from #eROAR Nov. 22

Dr Linda Li @LLi_1 2014 recipient Outstanding Inclusion Patients in Research award @Arthritis_ARC patient advisory board 2time win!



Exercise is necessary. Raise a little sweat.

What do you want researchers to find out for you?

I've heard a lot of talk this past year about patients being more involved in research and in decision making. People in high places are talking about including the patient voice, from Ontario's Health Minister Eric Hoskins on Thursday at Health Quality Transformation 2014, to the Canadian Foundation for Healthcare Improvement (CFHI).

Minister Eric Hoskins said the first priority is to create and grow a patient centered health system. CFHI (Canadian Foundation for Health Improvement) says they are "Putting Patients at the Centre of Care" and they are behind the Strategy for Patient-Oriented Research (SPOR) which has big research projects coming up. These indicators sound as though the patient rallying cry of "Nothing about me without me" has been heard.

This does not guarantee success - there are many forces that want to see their own vision of participatory medicine, some because of profit, some who like the status quo, and others who resist change.

I was involved in a tweet chat this weekend with The Arthritis Research Centre and their Patient Advisory Board. This organization and their researchers have found ways to include patients and their views throughout the research process. ROAR stands for Reaching Out with Arthritis Research.

The event featured researchers speaking about their new projects to an audience that included anyone who wanted to listen to the live webinar or be in the in-person audience. That's a big change from the usual way we hear about and use research in our own lives.

They want to know what the audience wants to see and hear at the next eROAR event. So I take that to be an open question. Let them know what you want to hear about.

Let them hear what you want to see studied.

They'll have to use those ideas to get grants to do the research so it may be a long shot but I'm betting you all have at least two questions that you want answered.

What questions do you have that you think are being missed and neglected in your health area?
Do you ever look at research papers and wonder who on earth would have picked ____ as a research topic? I have been saving some doozies that I just won't post and let them see the light of day.

I'll forward all responses from comments to the Arthritis Research Centre, or you can send them direct at their website. It doesn't matter what country you're in. You know researchers - they all share. Your ideas won't go to waste.

ARC researchers, bloggers, and Arthritis Society representative

If you are interested in a definition of Patient Centered Healthcare I have linked to a paper by Donald Berwick that has a good discussion of the concept.

Patient Safety Creates Patient Stories

At Health Quality Transformation 2014 the day started with two patient stories. The story in the opening remarks by Dr. Joshua Tepper demonstrated health care working well.

The other story was an analysis of what went wrong in the case of Greg Price of Alberta and was told by Dr Ward Flemons and David Price, Greg's father. Greg's case triggered a review of processes for managing dealings between referring physicians and specialists or clinics which offer specialized healthcare services in the Alberta Health Care System.

They have been sharing the findings of this Continuity of Patient Care Study with healthcare groups across the country. The gaps in Alberta are in no way unique to that province and this issue was not unique to Greg. This study came about because many Albertans gave co-ordination of care a poor rating in the HQCA (Health Quality Council of Alberta) patient experience survey.

Comments/Recommendations from this session:
Healthcare information is disconnected and laborious to track well enough to see the whole story, even for professionals.

There is a wall between the patient and the Electronic Health Records system. Patients are robbed of the information they need for their own care.

Patients should be able to track referrals made by their doctors to specialists who represent the next step in their care. Closed loop referrals would close the gap.

The motto of the Alberta Medical Association is "Patients First". We need to be clear who is accountable for the patient's health.

We need shortcuts for time sensitive conditions.

David Price had comments to make.

In healthcare there are multiple roadblocks, not a culture of seeking ways to make things better.

We need the key decision makers to listen to what patients need.

For most of the recommendations in the report there has been no change. How do we as patients get the system to listen and change?

If occurrences on his farm went wrong to this degree there would be a Hazard Analysis and all work would be halted. There are contrasting approaches between the food business and the health business. If you say standards are not do-able in the food business you are out of business.

If you read "The Cancer Olympics" by Robin McGee of Nova Scotia you will see similar issues to those in Alberta.

In Ontario my referrals to specialists seem to be lost or mislaid more often than not, so I know it happens here too.

Patient Safety

We all need to be proactive patients. Now I call a week after a referral to a specialists to make sure it arrived safely.

The only good sign to be seen is in BC where Delia Cooper, as the patient representative from Patient Voices with Providence Health Care and the Shared Care Committee was able to "facilitate interaction between family physicians, specialists and patients to develop and implement and processes to streamline care for patients with chronic conditions... This practice has spread provincially and patient referrals to specialists no longer fall through the cracks.

So if they can do it in BC you wonder what the problem is with the rest of the country.

Traveling With an Invisible Disability

Traveling with a mostly invisible illness is difficult. It can make you sound neurotic when your concerns about problems seem trivial to others who have the power to help you. Generally I take advantage of any help that is available. When I went to California for the Medicine X Conference in September I booked a flight with no stopovers that went direct to San Francisco. That was a big plus. 

Air Canada offers help to people with disabilities who register in advance. In practical terms this means after I check in they will take me that long distance to the gates at the airport in a wheelchair or little vehicle. I'll give a gold star to Air Canada for making life easier, without even a fishy eye as in "You look perfectly fine to me". The other issue with the wheel chair is the that going through customs usually involves a long line and standing in line is actually harder than walking. Missing that experience helps me.

I do go somewhat out of my way to remind myself, and to help others realize that I can't carry heavy things. When travelling I invariably wear my wrist braces because it's a lot easier than explaining over and over.

I travel with older splints so breakage or loss will be less critical.

On the way home to Toronto from San Francisco I asked at the gate if there were any rows that had empty seats but was told the flight was fully booked. An hour into the flight when I got up and looked around there were many empty seats. After I explained to the flight attendant that my fused wrists meant it was a problem to maneuver in a small space they gave me another seat. The other two people in my row were delighted to see me leave. That's an example of the value of making a reasonable request in a non-confrontational way

I've learned a good lesson about getting cheaper hotel rooms. This doesn't work when the hotel you want to be in has a big conference, since they are generally full in that situation, but if not I check the prices on the cheap sites like Trip Advisor for instance. Once I have that price I phone the hotel direct and say I would like to book a room but I found it listed cheaper online. Usually they will match or better that price for you. This was a tip from a front desk person in Nanaimo and has worked very well as a money saver. The hotels get so little money from the online sites that when you book that way you are often put in a little room by the ice machine. 

The harbour in Nanaimo from our hotel room

I also ask for a room with grab bars in the bathroom. That helps and usually the rooms have other useful touches for disabled guests. 

Customs and pills is a worry: The drugstore that I use made a set of small labelled vials for prescription drugs marked "For Travel". That helps reduce the volume of pill containers and gives me "official" pill vials. 

For vitamins I used a muffin tin and saran wrap that sticks to itself to make little "pill pockets".

Long ago I got tired of pulling out tubes and containers of creams and moisturizers so I now put them in these sample size jars. It saves a lot of wear and tear on my hands and they last weeks between fillings.

For my one "personal item" allowed on the plane in addition to my carry-on on for the flight I chose a backpack. It's roomy and easy to handle. That makes it great for hands-free shopping and carrying a computer, cables and rechargers.

For the plane I take my Tranquil Eyes goggles in case it was too drafty or bright during the flight. Using them can help dry eyes from Sjogren's Syndrome, help you sleep or ease a migraine. 

Tranquil eyes

This post is part of a blog carnival for the Hurt Society Blog Carnival ePatient Travel Edition. Link to be added

Differences Between Family and Support Group

Today I went to a conference called Health Quality Transformation 2014. It's great to take part in this kind of learning experience, and this is the biggest conference I have ever attended. 

There were 13 break out sessions held in the morning and afternoon and all attendees were able to chose two. Luckily for all they will be appearing on the website of Health Quality Ontario in the next few weeks. If I deduct time for the two I attended that will give me 12 hours of video to watch. It's a sign of real openness. We were also given a copy of the yearly report on how our health system is performing.

Three of us who were patients got together at the end and came up with two ideas. One was suggesting that a patient be added to the planning committee. None of us knew whether this had happened this year but it never hurts to suggest, and we had all felt confident because of our positive reception at this year's event.

The other suggestion we would want to embed with them was that the social support area that many patients experience positively should be explored. We attended the more patient oriented sessions and that seemed to be a topic that did not come up. I was in one that mentioned self-management as an important area in a pilot project in the north, but it was not mentioned specifically.

We have all seen how valuable it can be to have support and advice from peers and others who have similar problems. Of course family and friends play a part, but you just can't replace the helpful advice you get from others who have had similar experiences.

This is a "real" support group, not a virtual one of the type that I mean to depict

Here are some words from Julie that illustrate the difference.
She saw this advice on WebMD.com as part of an article.

They advised: "Explain what RA is like. Giving people the basics on RA is just the first part. More important, explain what it's like for you. You may look the same as always, so people may have no idea what you're going through. Be specific. Describe what morning stiffness feels like. Talk about daily fatigue. Really try to get across how it affects you -- what it feels like when you do certain tasks or what is really hard to do."

She has a large and supportive family and here's her opinion about this advice.

"Do you really think that your family would sit down and listen to you describing how RA feels and remember what you said and be able to identify with your problems?  I don't!  The members on this RA support group do understand and listen because they are going through the same thing.

Even though my family is fully aware of the fact that I have RA and are very helpful and kind to me, I don't think they would want me to recite everything about "how it feels" to them.

Most people think if you Look Okay - then you are Okay.

What do you think?"

Myself, I think Julie has a way with words and I always enjoy her comments. She has also been a big help as I work towards doing a post every day for a whole month. This is now Day 20, so I am 2/3 of the way there.  Yay!