People with diabetes' experience of care in hospitals

[Patient-Safety-Learning]

These comments were made by people with diabetes in response to a Twitter thread asking "Why is a hospital stay scary if you have diabetes?"

If you have diabetes, or care for someone who does, please share your experience with us by adding a comment to this community thread,

“I was in ICU after a car accident—none of the staff knew how to work my CGM and/or my insulin pump. I had to manage my own care”

“For me it was when I went into hospital for surgery and the nurse said 'Type 1... so do you take insulin for that?'... that's not a reassuring thing to hear minutes before you're taken into the theatre!”

“Lucky to get out alive.”

“DKA 10 years ago, once back in normal range the consultant insisted I didn't need anymore insulin & refused to let me have any. Obvs within 3 hours I was back in DKA, he wouldn't come see me but had a convo with my husband on the ward phone where hubs explained how T1 works.”

“I've been given a full day's bolus, through my iv and then told I was wrong when I said that I only bolused when I ate. Massive hypo followed quickly. I was then told it was my fault and I should have said something.”

“After being admitted as an emergency, my own insulin ran out.  I was given 2 (2!) of the wrong types of insulin and told that 'it would be okay'.”

“They were often confused about T2 versus T1 - lots of emphasis about low fat foods and only being allowed a low fat yoghurt for puddings even though I was on a pump! I had a bag of snacks though as it was a planned hospital stay”

“After a major medical issue I was denied insulin in the ICU for over 24 hours but was told I could have some pills to treat my type 1 diabetes”

“Last time I went to the hospital, they took my pump (forcefully) and refused to give it back. When I protested, they sedated me. I was in and out of sedation having a panic attack bc I couldn’t breathe. They sedated me again and put me on DKA protocol, even tho I wasn’t in DKA.”

“it’s so scary right like you know that you’re the expert on your condition and your needs but that power gets totally taken away”

“Handing over your care over to a group of nurses who have no idea what they are doing. It’s super scary. I hate it when they lock it all away and you can’t get to it.”

“I didn’t feel safe either. Told them on a few occasions I felt ‘low’. Finally Lucozade got wheeled out but it was almost an inconvenience”

“Totally understand why they don’t know much about it if it’s not their specialism BUT some are so arrogant that what they were told one afternoon 10yrs ago is the absolutely way to deal with, and that the person living with it doesn’t know what they’re talking about!”
Sarcastic responses “You seem to know a lot about it!”

“The neurologist told me I am a terrible diabetic.”

“I never feel safe because they don’t allow me to dose my own insulin and last time dropped me from 600 to 40 in three hours and then shot me back up so fast when i specifically told them that i would go low and high from that much insulin”
Report of being diagnosed with type 1 diabetes while in hospital, despite telling every healthcare professional she had T1.

“I smuggled in my own tester and meds and took care of myself.”

“I think the biggest thing for me is them not understanding insulin dose when they’re writing up your chart and how you don’t really have a “typical” insulin dose that fits neatly into their charts because of carb counting or correction doses/reduction dose. It’s strange, when I’ve had DKA admissions and I’m on the sliding scale IV it’s fine because there’s clear guidelines but for just day to day injection management it’s soooo difficult.”

"Daughter had food and insulin withheld in a mental hospital."

“the ward nurses didn’t even know I had T1 until the more mobile lady opposite me went and fetched a nurse who had been ignoring my call button. I was hypo and couldn’t reach my treatment.”

"Taken off insulin for two days as no doctor to prescribe."

“Particularly bad experience when a nurse left the glucose drip on but turned off the insulin. It terrifies me to think how bad this could have been.”

[HelenH]

Just read it. Very interesting. I would argue furiously if I was an in patient and anyone tried to take my insulin pump or cgm off me. Direct complaint to senior management if they even tried and I was able to do so. 

Hospitals and health professionals in general or unrelated care will typically understand the diabetes rule book - which is ok for generic ‘how it works’ but not for someone who is on a pump who has taken a few months to get your levels balanced on a pump - plus often needs tweaking.  Applying generic rules simply is not good enough to deprive someone of a working system if they already have a pump and are able to use it.

Visits to doctors ‘specialist’ nurses often results in their gaining useful information and insights as to diabetes, certainly I don’t get anything out of it given my understanding is much greater than theirs. 

Even my pump consultant can’t necessarily offer much apart from fine tuning settings and control options, she is fully aware that I know best how my body works and reacts to insulin given I’ve been administering it to myself since 1985.

It really is frightening prospect as a diabetic to think that your hard work could be undone by someone with no practical working knowledge of diabetes and their ‘attitude’ to anyone who actually does know better than them.
 

posted in response to my Facebook post by my cousin, Steve Smith