Here is a new idea: "The Patient Knows Best ..."

[PMRpro]

There are doctors, rheumatologists even, who have confirmed something we often suspect: The patient may well know what they need better than their doctor. And a study confirms it.

medscape.com/viewarticle/pa...

[JGBH]

Indeed but too many doctors think they know better even when the patients explain clearly how they react to a certain treatment. It must be ingrained in their psyche….

[Koalajane in reply to JGBH]

Very true.

When my GO said I could look after my PMR myself now @nd if concerned to ask for a blood test I was concerned and she told me I know my body best!

[JGBH in reply to Koalajane]

Good to hear you have an open minded GP.

[PMRpro Ambassador in reply to JGBH]

They think they know all there is to know about medicine - what can we possibly know better?

[JGBH in reply to PMRpro]

Often some patients ‘know’ their body better than doctors, in the way certain drugs affect them badly. Doctors prescribe following their training (of course in trying to help the patients) and the development of drugs by big pharma. It’s a double edge sword. Doctors need to listen more to patients when a drug is causing problems.

[PMRpro Ambassador in reply to JGBH]

"Doctors need to listen more to patients" - full stop ...

[JGBH in reply to PMRpro]

Absolutely.

[Lenore58 in reply to PMRpro]

Yes, because its not just that we know how drugs are affecting us. Its bc many of us are serious researchers about our own health problems because it's OUR bodies. We are often up on the latest medical findings and also informed by the collective genius of others with our condition, through forums like this. Doctors are busy with many patients and many conditions, and unless they are legitimate experts in PMR and GCA, we often DO know more than them.

[PMR_sufferer1 in reply to JGBH]

It's quiet simple patient's feel it Doctors prescribe it. I manage my PMR myself . My doctor was great at first but due to surgery pressures seemed to lose interest . So I feel the pain and know when a flare occurs so with help from you people do my own thing. It works for me !

[Bcol]

A good read, thank you. From what I have learned on the forum, I suspect it may take a while, if ever, to become the norm with all doctors/theumys.

[Bleakley1]

How I agree with your comments and the other replies you have had.

[Poshdog]

🥳 x

[Gimme]

The most shocking thing is that it has taken this long for someone to come out and say it. I wonder how many of the participants took that on board?

My eyes alighted upon this bit "other factors important to their well-being included good sleep, enjoyment of life, independence, ability to participate in valued activities, and freedom from emotional distress, ". Exactly, and that is why we put up with all the down sides of pred. We want a reasonable quality of life and we want to still feel like we are alive. We want to be well enough for those things. These factors need to come into the equation when we talk about risk benefit ratios. Emotional distress is important too. I don't want to leave the doctor's surgery feeling more miserable than I did when I arrived, because I was spoken to like a child.

[PMRpro Ambassador in reply to Gimme]

I think actually it has been acknowledged much longer. One of the groups mentioned is OMERACT which is all about outcomes measurement in rheumatology. For over 20 years now Patient Reseach Partners have been part of their processes - at the big international conferences at least10% of attendees are patients and their opinions and votes are ranked equally with those of doctors and other HCPs. The rest of the time we are consulted and included in local research groups.

ncbi.nlm.nih.gov/pmc/articl...

Where we are mostly failed is by the doctors we meet day to day who don't listen to us.

[PMRCanada in reply to Gimme]

Exactly Gimme! I felt that way about my first rheumy….only lasted 3 appointments then I refused to go back (she also accused me of lying and putting up my pred dose “without her permission”).

I am ever grateful for my wonderful GP and current rheumatologist who actually listen! They don’t make decisions about my health….we do, together. I will say “enjoyment of life” is key.

[prunus]

My consultant rheumatologist told me right at the beginning that I would know more about my GGA than most doctors.

[Gimme]

Though I do think that some doctors do accept that the patient is the expert when it comes to their own body. There are some enlightened HCPs around.

[Sophiestree]

I thought you meant patientsknowbest.com/ until I read the article. I seem to get notification of appts now from this but there nothing on there other than a couple of appts. My NHS app is much better. I like your link better.

[Steal]

Thanks, PMRPro, who knew! I'm astonished that all this expensive research is telling us what we already know!Do medics really need to be told in a research paper that it's a good idea to listen to patients?

Apparently so.

[PMRpro Ambassador in reply to Steal]

To get any money to improve things you have to have it on a scientific basis!

[Francesbarbara]

Having suffered since aged 11 from Essential Tremor, I got fed up of GPs complete lack of understanding of this condition. I produced a short paper on what it is like to live with something that can affect so many different aspects of our lives and gave copies to two of the doctors. One (female) telephoned me at home, thanked me for such an eye-opening account and had not realised the extent of my problems. The other one referred to it in his letter to the consultant , as being so very useful. I have certainly benefited from their new attitude and perhaps we need to educate doctors ourselves. Things in writing sometimes carry more weight, as long as they read them ! Perhaps I was lucky.

[JGBH in reply to Francesbarbara]

I certainly believe that writing to doctors regarding the problems we have coping with our various health issues is an important factor because the letters then should be added to our medical records. I don’t think many people do actually write to their GOs/consultants. Some people are still intimidated by doctors because of their attitude… I am not. Can imagine my records carry a Red Cross!

[Francesbarbara in reply to JGBH]

I can well understand how some people are intimidated but I am fortunate that I worked as a physio. for many years, so very used to medics. I also enjoy writing !

[JGBH in reply to Francesbarbara]

That’s certainly helpful… The problem is that many people still put medics on a pedestal… Big mistake… It requires a complete reassessment of peoples’ rational.

[Elsabounre]

The doctors stay with what they have learnt..old school medicine and what the sales reps from the pharma companies are selling at the time. There are however a few docs who will actually listen yo your ideas after we have some experience with our illness and also researched with others..often..the patient does know more than the Doc on the topic of their own malaise...and sometimes they do know more of a different illness..if they are up to date with not only the most modern medicine but also with meds that can be used for different illnesses..

[Bennijax]

Rheumatologists might go into this field as young doctors because they think it is limited and set into well defined treatments, and they are less likely to have to think too hard about individual reactions - they rely on a pathway that is taught to be The Pathway, and this gives them some comfort if they feel less confident in their own abilities.

[PMRpro Ambassador in reply to Bennijax]

I think it is because they are attracted by the concept of no night duty or emergency cover at weekends!! They are sadly disappointed here in our region - ALL qualified doctors get their turn on night duty in the ED, whatever their specialist field.

[JGBH]

Agree… anything for a comfortable life… Night duty and rotas should always form part of a doctor’s duties, as it used to be. After all patients do not choose to become ill from 9 am to 5/6 pm during the week only. When they start Medical school they should accept the duties, can’t pick and choose, or train for another job. It seems that status and money are mainly what attracts them. And yes, there are still a few wonderful medics and they make a lot of difference to patients’ wellbeing. Not many though.

[Joanbill13]

my doctor prescribed 3 days antibiotics for a UTI I told him that wouldn’t work but he was adamant. NICE say 3 days. I went to the pharmacist who told me doctors don’t listen to their patients who know themselves best ! What a clever man. He sold me 4 more days of pills. Don’t mind if he is making money if I get rid of infection