Open Letter to All Health Professionals Treating Clients with Fibromyalgia

Open Letter to Health Providers

I usually never write a letter of complaint after I have a(nother) bad experience with a health provider. I just want to move on. In some cases I am afraid commenting will affect my treatment. In others I just feel disillusioned that it will make any difference.

I am coming up on my four year anniversary since diagnosis and I feel a sense of responsibility, that after all my experiences I should raise awareness about the basics of safe, competent, patient centered care. So I am posting a letter I wrote to an acupuncture clinic I tried last week, which was an epic failure, in the hope that a health provider out there reads it and learns a thing or two!

Good afternoon,

I would like to cancel my appointment next week. Treating chronic pain patients requires specific skills and I would like to pass on a few suggestions for improving your clients’ experience:

– after the acupuncture needles are put in place, inform the client how they can call for assistance if they need to. I was in significant pain because of the lying position I was in and could not get help during the last 10 min of waiting.

 inform the patient about each procedure beforehand, what it will be like and what the possible consequences might be. Sarah (name changed) asked if I would like to try cupping and after I agreed she began the treatment before explaining what it entailed. Furthermore, instead of testing one or two times she did it all over my back. Since then, I have had chronic headache, a pain flare and deep bruising. The definition of my condition is increased pain sensitivity so an experienced practitioner should have trialed the treatment on the first visit. I have had to see my physiotherapist to undo the muscle spasms caused by this treatment.

–  I was given a herbal remedy but the ingredients were not explained, nor were the benefits or possible side effects described. This is the equivalent of my doctor saying ‘here is a prescription’ without telling me what it is, why, or what it should do! I have a lot of sensitivities to drugs and supplements, and often need a  lower dose than normal but was not given an opportunity to discuss this in private.

All of these examples are ultimately a failure of patient-centred care – making the client feel like a person rather than a diagnosis –  and therefore,  I will not be returning to your clinic.