I ran across this very poignant post on Substack that I thought really described the role of advocacy as best I've seen.
Most of us on here already know this. That there is ultimately nobody to rely on regarding one's own health other than yourself. Sure you can relinquish this responsibility to others but as Maddie describes they are now in the drivers seat and their route and desired destination may not quite be the same as yours. Especially when one solely relies on the bureaucracy of a health care system (regardless of where it's at) or GP.
I am an environmental scientist advocating for landowners who wish to do something with their land other than leave it in its natural state for the good of mankind.
It is an adversarial relationship with authority whose goal is to leave everything as it is.
Reality is my relationship with the medical personnel that are "treating" me is adversarial in that I do not want to follow the outdated protocol that they want followed as I do not want the results of their protocol.
One think I discovered in my career is that when representing my own interest with land I personally own I lose my objectivity and my performance suffers. It is not a critical flaw rather it is rough around the edges. Thing is I am an expert with land issues, I am not with medical issues.
As a practical matter I am considering bringing someone with me to my appointments. Not as an advocate rather a witness to perhaps influence the honesty of the medical personal.
I find it helpful to understand that the order of importance to the medical personnel seems to be as follows:
Their personal ego and career.
Their relationship with their colleagues.
Their relationship with the organization that employs them.
Absolutely, advocacy applies to many other things beside healthcare. It sounds like you've some great advocacy experience in land use domain for a good cause I might add. That experience I'm sure you've found useful in advocating for your own health care. Bringing someone with you to witness and take notes is an excellent idea.
I think your list of importance is perfect...we are last. In the US I would add insurance companies to that list somewhere. of course above the "my relationship with them"
within 10 minute visits they can't possibly know your name let alone your illness.
"I am considering bringing someone with me to my appointments. Not as an advocate rather a witness to perhaps influence the honesty of the medical personal."
Absolutely this. I just wish I had someone who'd come to appointments with me...
Definitely having someone with you during your appointments that your GP knows is a professional will help get their attention and reduce gaslighting. I see you're in Ireland. You may want to check around as there are patient advocacy groups that will do just that. I know here in the US many are free services and often can be with you during your visit via phone conferencing although in-person would certainly be best.
I just did a quick look and here are a few sources in Ireland some of them are specific to an illness such as Diabetes or cancer but others are general. The point is that these people know how to navigate the health care system in your country and your GP will know that when they show up for you.
Having this kind of support is not like you giving up your advocacy but actually quite the opposite you are advocating for yourself by making sure someone more knowledgeable is with you as a consultant.
I confess I know nothing about the health care or advocacy in Ireland but just offer these as maybe a start for your search.
Also, just another thought. I know PAS has a PA helpline you can call. I've never used them and I'm not sure if they are just for NHS or whatever. Calling on sleepybunny ...can you help with this?
sleepybunny will know how to contact them or maybe someone else on here.
I am not thinking of a knowledgeable person to attend any appointments, rather a witness. I am not thinking the person needs to have note taking ability.
I am thinking of changing the behavior of the professional by forcing them out of their comfort zone. Pretty much oversight which is non-existent with a medical personnel's I am paying.
To be clear, I only need them to order tests. I do not want the 1 mg of hydroxocobalamin every other day protocol as I find that not as effective as my own.
Exactly, you just need a "witness" Hidden preferrably male. A friend, a neighbor, just someone to be there with you. Docs attitude change when there's someone to back you up.
Sadly, a male likely would be a better choice, a female might be more effective with some professionals.I am going to bring my brother who is a c student at best. I will have him wear a suit.
Great discussion. Considering every individual has different backgrounds, different GPs, different health care systems I think how each of us approaches self-advocacy will be different. Some have a strong aptitude and ability to learn and absorb and some do not and there are many in between. The point I think is to know where you are on this spectrum (hard to do sometimes) and gather the resources that fit your needs and circumstances. Personally, I advocate solely for myself and I’m not sure, jade_s, it completely has to due with me being male, assigned that at birth and I’m sticking to it : ), as I went through 14 doctors in my first year trying to get a diagnosis before I found a few who would listen. I’ve found that the best doctors that I have on the communication front are female. They are also, in my experience less arrogant and they do what females do best, they listen and that is invaluable.
Male doctors it seems tend to grunt something unintelligible a few times, scribble some notes, hand you a prescription and send you on your way. That's when you have to stop them and ask, ask, ask...
Two things that each of us need are Self-efficacy and Agency, and we need to understand how strong we feel in both.
Self-efficacy is the individual belief in one’s own abilities based on feelings of confidence and control and has often been considered the determining factor for motivation and behavior.
Patient agency is when we are motivated and engaging with our health care system, GP etc. The exercise of Patient Agency allows for direct participation with your doctor/GP in determining and understanding a diagnosis, your plan of care, and self-care which many on this site have. See this paper.
Constructions of patient agency in healthcare settings: Textual and patient perspectives
In any case, whether you feel strong in both of these areas or one you should not give up self-advocacy but rather some will need more help maybe in the form of a witness, maybe in the form of a knowledgeable consultant, or completely self-advocate. Everyone’s circumstances are different.
Thanks for the discussion...I'm no expert but I do think the better we understand this the better our health care results will be.
"I am thinking of changing the behavior of the professional"
Is exactly right! People have said they'd come to appointments with me, but no one ever does.
My situation is not helped by the fact that my Narcissistic Personality Disordered mother got there first, and filled whatever doctor's head full of her gaslighting and manipulation so no one will listen to me
Really interesting article to read . Thanks for posting it. I have plenty of thoughts on it but only have time to mention one. Nurses used to be taught on day one that they are the advocate of each patient under their care which then increases in terms of responsibility if health situations worsen. I suspect that the doctors were taught even more clearly and firmly their responsibilities. But the fact that the BMA in recent years have had to remind doctors that gagging clauses should not be allowed to break responsibilities to patients and their safety shows how deteriorated the healthcare system has become.
Your comment about "gagging clauses" jogged a memory loose... it occurred to me that when I was young in a small town, Midwest USA there was maybe one or two doctors in the whole town. Our doctor new and cared for the whole family, my grandparents my Dad and all my aunts and uncles, me and all my siblings, and my nearby relatives. I remember He and his wife would show up to our family reunion picnics, and church gatherings, the annual carnival when it came to town. I guess my point is that he not only knew my family but was intimate in our medical history and was a friend of the whole family. Today to carry on your point doctors here in the US are forbidden by ethical standards to have any kind of personal relationship with patients. They don't even want to see you outside of your visit time for fear of the perception they are violating this ethics rule and losing their medical license.
Such a good observation you've made. Now doctors here just rely on test results heck they hardly even look into your eyes anymore, or check the condition of your skins, hair, and fingernails. So much can be told by the condition of your fingernails are they soft and smooth? are they rough and brittle and chipping? I've only had one doctor grab my hand and look at my fingernails when she was checking for iron deficiency.
So the rules here in US are effectively the same as a gagging clause. Plus if they don't talk to you or look you in the eye they can hurriedly write a prescription and be done with you, sending you on your way, all done in 10 minutes and ready for the next patient!
Thanks for your comment it was very insightful. Rexz
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