Advocating for Blood Pressure Cuffs and Gowns in the ER

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Note: I have explicit permission to share this story. I wanted to share it to help those who work within healthcare to see ways that they can make change, and those who do not work in healthcare to see how they might advocate.

A call came in late at night. It was a dear friend of mine and she was in the emergency room. Luckily it looked like a false alarm, but she was really upset. She had been in this same hospital for other procedures and had always been accommodated, but for some reason in the ER, things were different this time. They didn’t have a blood pressure cuff that fit her (a serious issue at any point, but even more serious since blood pressure was part of the concern that had led her call the ambulance in the first place,) and they didn’t have a gown that fit her. She is a fierce activist in her own right, but just didn’t want to risk retaliation at a time when she needed care. She asked if I would please reach out to the hospital after she was back home and see if I could get them to fix the lack of accommodation. 

I discussed this in my piece about creating size-inclusive healthcare spaces, but if you are someone who works in a healthcare facility, this could be a great opportunity to ask yourself “are there ways that fat patients in our facility are treated differently/less well than thin patients.?” Examples would include if a blood pressure cuff for thin patients is available in every room, but a cuff for fat patients either doesn’t exist or has to be found, and if thin patients have gowns that fit them but fat patients are either given a sheet or asked to try to wear two gowns.

I started on the website for the facility and couldn’t find anything on the website about patient services, so I started by calling the main line.

“I’m calling about a negative experience in your ER,  I just wanted to see if I could talk to someone to see if we can fix it for the next patient.”

I chose my wording carefully here because I didn’t want to get into the fact that I wasn’t the patient until I was talking to the right person.

The woman who answered immediately said “Yes! Let me transfer you to someone who can help”

She transferred me to risk management and, while I didn’t think that was ultimately who I needed to talk to, I left a voicemail as requested, deciding to give it 24 hours before trying again.

Later that day I got a voicemail – “this is Amber from patient services returning your call.”

I immediately called Amber back and she picked up. I explained that I was calling as an advocate for one of their patients who had recently had a negative experience in the ER, and that I was hoping to talk to someone who could help make changes.

This was our first stumbling block and Amber immediately said that she couldn’t talk to me if I wasn’t the patient due to HIPPA. I explained that I wasn’t asking her for any information about the patient – that, in fact, I was calling so that the patient could remain anonymous, so it wasn’t a HIPPA violation.

She then said that even if it wasn’t a HIPPA violation she had to speak to the patient directly. I said I understood why she would rather speak to the patient, but that the patient had specifically asked me to call as their advocate because they wished to be anonymous, and that the issue I wanted to discuss with her applied to many of their patients, not just this one.

She relented and asked what had happened. I explained the situation.

She immediately said “Can’t she just wear two gowns?”

I asked her if she had ever tried to wear two gowns and she said no. I asked her to imagine trying to put on a shirt that was too small, and then trying to then cover herself by putting on another shirt that was too small, but with the second one on backwards. I explained that it’s uncomfortable and restricts movement. Then I said “besides being able to move freely, do you think it would make larger patients more comfortable if they were able to have the same experience as thin patients and get a gown that fits them properly?” She said that she understood and that she would speak to the department that orders the gowns.

I then said “Thank you so much. Just one more thing. What can be done about getting, ideally, conical cuffs, or at least thigh cuffs for larger patients in the ER?” She mentioned that larger cuffs were available elsewhere in the hospital. I said “Oh, so the emergency room just doesn’t have blood pressure cuffs, it just borrows from other areas of the hospital?” She immediately said “Oh no, of course they have them - taking blood pressure is critical to patient care in the ER!” I wanted to suggest that, by its nature, the emergency room probably needed quick access to a blood pressure cuff for a larger patient, rather than waiting for someone to either run to another part of the hospital to get one or wait for someone to run one down. Instead I said nothing, hoping she would have a realization. There was an uncomfortable silence. I breathed through it (There’s a reason I became a professional speaker - not talking is not my strong suit!) Finally, she broke the silence saying “I understand. I’ll fix it.” I offered to help her source the cuffs if that would be helpful, and she told me that she’d let me know, but she thought that she knew the right person.

I called back two weeks later and was assured that it was done, larger gowns were available, three thigh cuffs were available and they were “looking into” getting conical cuffs. I thanked her profusely on behalf of patients whose lives she had improved and, possibly, saved. I’m also calling back every two weeks until they have the conical cuffs.

I want to note that, while I recently passed the exam to become a Board Certified Patient Advocate, I wasn’t a BCPA when I made this or hundreds of other calls on other patients’ behalf. Advocating for inclusion doesn’t require a certification. In my experience it requires persistence, and it doesn’t hurt to be pleasant and polite, but firm in your conviction that fat patients deserve to be accommodated. Of course, privilege comes into play here as well. Advocating shouldn’t be necessary and nobody is obligated to advocate.

This is definitely not the first time that someone tried to tell me that I couldn’t advocate because of HIPAA. That’s absolutely untrue. HIPAA is meant to protect patient privacy, which means that they can’t give me information about a patient without the patient’s permission, which is as it should be. It’s also fine, because that’s not what we are asking for. We are asking them to accommodate not just the patient for whom we are advocating (who needn’t even be named to make our point,) but many, many patients. In situations where I’ve been advocating for someone in person, I’ve even had the doctor say that I can’t come into the room with the patient’s permission because of HIPAA – that’s also completely untrue and, from my perspective, is a serious red flag.

Finally, I just want to say again that privilege will always come into play here and that the results of advocacy are not guaranteed. So if you advocate and you don’t get the results you want, please know that it isn’t your fault, it’s medical weight stigma’s fault.

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More Research

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*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings: Fearing the Black Body – the Racial Origins of Fat Phobia and Da’Shaun Harrison: Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this.