When a surgeon told Sadie Norris that her young son with type 1 diabetes (T1D) couldn’t wear his insulin pump and continuous glucose monitor (CGM) during a planned tonsillectomy, she became nervous. She called her son’s endocrinologist, who overruled the surgeon.

Norris, who lives in Kansas, now keeps her endocrinologist in the loop about any hospital or emergency room (ER) care. She also insists on a division of labor with most medical staff if her son has unexpected hospital stays or ER visits.

“I tell them, ‘I’ve got the diabetes part, you handle the nausea and dehydration part,’” Norris said. “They tried telling me not to give insulin when he had high ketones and was vomiting… I know my kid’s body better than they do.”

Unfortunately, Norris’s story is just one of many instances of substandard T1D care in hospitals shared frequently on social media. Around the country, positive policy changes are in the works, setting up basic standards for inpatient care and allowing more widespread use of CGMs in the hospital. But many patients and families still find themselves up against ill-informed providers who may not understand the realities of T1D blood sugar management.

This is partly because T1D blood sugar management is so individualized and complex that it must be self-managed largely without the help of healthcare providers on a day-to-day basis. This level of independence doesn’t always fit well in a hospital setting, according to Gary Scheiner, renowned diabetes care and education specialist (DCES) and director of Integrated Diabetes Services that provides virtual care out of Wynnewood, Pennsylvania.

“T1D management requires constant adjustment and integration of countless factors. It truly is a disease of self-management,” he told DiabetesMine. “Hospital staff are not used to allowing patients to manage their own condition, so it often creates conflicts.”

This doesn’t mean that people with T1D should avoid hospital care. Instead, they should be well prepared to navigate these obstacles.

To help, we polled several experts and a handful of members of the diabetes online community (#DOC), for their tips on ensuring healthy blood sugar management during a hospital stay.

Whether you’re facing a planned medical procedure or just want to be prepared for any emergency, it’s good to familiarize yourself with the diabetes care policies and resources at your local hospitals, according to Constance Brown-Riggs, a DCES and a registered dietician who owns CBR Nutrition outside New York City.

She suggests that you do online research or call each available hospital to learn its policy on diabetes self-management and whether there would be a team of diabetes care specialists available during your stay. In particular, ask whether patients are permitted to keep insulin pumps and CGMs attached and independently operate these devices as long as the patient is conscious. Also, how is glucose control handled if the patient is under anesthesia?

While the American Diabetes Association has developed standards of care for people with diabetes in a hospital setting, not every hospital has adopted such standards, or even has the resources to do so.

“The quality of T1D care really varies from hospital to hospital,” Brown-Riggs said. “This is because not all hospitals have diabetes care specialists or teams, and the policies on diabetes self-management vary.”

Scheiner says that while many larger teaching hospitals tend to have a strong team to oversee diabetes care, you shouldn’t assume that big, well-funded hospitals always deliver a higher standard of diabetes care.

“You never know,” he said. “Some small hospitals are very progressive when it comes to diabetes, and some large institutions are a bit ‘bass-ackwards.’”

Like the Boy Scouts motto, you should always be prepared for a trip to the hospital, if possible. With T1D, a simple stomach bug can sometimes turn into a dangerous blood sugar management issue. Keeping a pre-prepared hospital supply bag is a good idea.

Scheiner recommends that your go-bag should be ready with all the non-perishable items you might need for a week’s stay, including all your pump and CGM supplies — and importantly, the charging cables! — along with fast-acting glucose, backup syringes, test strips, and lancets. He recommends keeping a note on top of the bag reminding yourself what to grab from the fridge — namely, your insulin supplies.

Brown-Riggs emphasizes how important it is to bring along a list of the names and numbers of your regular healthcare providers and loved ones, your insulin and other medication requirements, any known allergies, and other relevant details.

She also suggests that people with T1D should bring along a copy of their “sick day plan,” with detailed instructions on your medication dosing routine. All of this should ideally be developed with the help of your healthcare providers and shared with multiple people who are willing to act on your behalf should you not be able to advocate for yourself.

Gillian Blundon of Ottawa, Ontario, who has T1D, says she keeps a bag ready for a hospitalization that includes medications, insulin pens, and vitamins for emergencies. She says that packing her own insulin ensures that the hospital won’t switch insulin brands on her and sends a strong signal to hospital staff that she is in charge.

“Because I bring my own stuff, the doctors and nurses let me have more control of my insulin dosages,” she said. “I’ve been told by them that my preparedness tells them I’ve had it for long enough that I’m able to manage myself.”

If you suspect you have COVID-19…

If you believe you’re experiencing symptoms of COVID-19 — especially trouble breathing, persistent paint or pressure in the chest, confusion, or bluish lips or face — don’t let your T1D hold you back from heading directly to the hospital!

The national advocacy organization JDRF advises: If you are able, call ahead to inform the hospital of your situation, emphasizing your (or your loved one’s) T1D status. They suggest packing a bag with at least 2 weeks’ worth of diabetes supplies and bringing a comprehensive list of your medical needs and key contacts.

On site, it may be difficult to communicate with busy hospital staff, especially since loved ones or care advocates will likely not be allowed to enter the building during lockdown periods.

This makes it all the more critical to provide all your relevant information at intake, notify your regular healthcare team that you’re being admitted, and “overcommunicate” about steps for ensuring your blood sugar management should you become incapacitated.

Under non-emergency circumstances, the hospital staff should have your medical records, but no one knows your medical history like your personal diabetes care team. Make sure they are in the loop about any planned hospital procedure, and make sure they get notified of any unexpected hospital stays, said Brown-Riggs.

For planned procedures, she suggests making an appointment with your regular diabetes doctor in advance to develop a plan of care for the hospital. “The plan should be shared with the physician and medical team involved in the hospital stay,” she said.

Make sure your diabetes care provider has permission to attend to you in the hospital, as that’s not always the case. To avoid conflicts and confusion, be sure to inform the medical team treating you at the hospital that you will have an outside diabetes care provider looking in on you during your stay. Jean Kruse Bloomer, a T1D living in Kill Devil Hills, North Carolina, learned that the hard way.

“I had bypass surgery at a hospital where my endo had privileges. However, he did not visit because I had to inform the doctors in charge that I wanted him to treat me. You can be sure they were notified for my second bypass,” she said.

In addition, make sure to designate a family member, friend, spouse, or even a coworker to act as your health advocate during a hospital stay. You can even designate a hired professional for the task if needed, said Brown-Riggs. If all else fails, a hospital social worker might be enlisted to advocate on your behalf, said Scheiner.

According to the Agency for Healthcare Research and Quality, it’s highly recommended to have a health advocate who can handle important care basics for you while you focus on recovery, such as:

  • Asking questions or voicing concerns to doctors
  • Compiling or updating a prescription list
  • Following your medication regimen, treatment, and instructions, including asking questions about follow-up care
  • Helping to arrange transportation
  • Researching treatment options, procedures, doctors, and hospitals
  • Filing paperwork or assisting with insurance matters
  • Asking the “what’s next” questions, such as, “If this test is negative what does it mean? If it’s positive, will more tests be needed?”

“Doctor’s orders” can be a daunting phrase to hear, but it shouldn’t be the end of the discussion. Scheiner says that in many cases blood sugar management in a hospital setting should be a negotiation, not simply orders dictated from above. It’s important to tell those caring for you in a hospital setting what you need to do yourself to stay healthy.

“First and foremost, negotiate ahead of time the right to self-manage,” Scheiner said. “Avoid having the hospital staff take away your usual tools and techniques in favor of ‘standing orders.’”

It’s also important to remember that there will be a revolving door of medical personnel attending to you during your hospital stay. In an ideal world, all information about patients would be shared seamlessly between shifts of workers but that often isn’t the case. Brown-Riggs said it’s important to communicate that you have T1D as often as possible to as many hospital staff members as possible.

“The usual hospital protocol is to ask for a verbal response to your name, date of birth, and allergies,” she said. “Patients with T1D should be proactive and mention it to everyone they come in contact with while in the hospital starting with the admission personnel.”

People who may have trouble affording insulin or other medications also should be just as forthright with discussing this in a hospital setting or during an ER visit. Many larger hospitals or ERs will have social workers to assist with connecting people with assistance to affordable care and medications, and there are often rules in place to protect confidentiality in such instances.

Often, the core problem is convincing hospital staff of the necessity of staying attached to an insulin pump or a CGM because they are inclined to stick with multiple daily injections and traditional fingerstick-based glucose monitors. In recent years, however, there has been a slowly growing, if uneven, acceptance of the utility of such devices in a hospital setting.

That level of acceptance may possibly be poised to make a leap forward into a new standard of care in the coming years because of the COVID-19 pandemic, said Brown-Riggs. Several hospitals, which have been treating COVID-19 patients, have switched to using CGMs to monitor patients’ blood glucose levels remotely in an effort to limit the chances of spreading the highly contagious respiratory virus. The success of these pilot programs may lead to a reevaluation of the CGM’s role in hospital care.

“The COVID-19 pandemic has accelerated the use of CGM in the hospital setting,” she said. “The U.S. Centers for Medicare and Medicaid Services (CMS) is developing a new standard for glucose management in the hospital that will permit the use of CGM to assist in the care of all people with diabetes.”

If you want to stay attached to your devices, you should include this in your care plan — and physically label the devices with your name. Be aware, however, that there are a few special safety precautions to consider about devices in a hospital setting. Any device that transmits a signal will need to be approved beforehand because there is a small chance it could interfere with other medical equipment, said Scheiner.

Also, metal devices cannot be worn in MRI equipment, he warned. Finally, it’s a good idea to keep the skin area where the surgery will take place clear of devices, infusion sets, or tubeless pump pods.

Because of the intricacies of blood sugar management, it’s difficult for people with T1D to avoid seeing the inside of a hospital or ER. You can find stories of poor hospital care, told sometimes in all caps, in many diabetes online forums. But such stories should not prevent you from seeking the care you need.

Scheiner says that while there are some situations in which you can seek favorable conditions for diabetes care in the hospital, often you simply have to be prepared to make the best of what may not be an ideal situation for blood sugar management.

“If it’s elective surgery, like a cosmetic procedure, and there is little faith in the hospital to manage your diabetes, you may be better off putting it off until a satisfactory plan can be put into place,” he said. “But for anything that is important for your health, don’t delay. The ramifications of needing treatment may far outweigh any temporary blood sugar swings.”