Delays in cancer treatment. Canceled appointments. Long wait times. Ascension patients still grapple with fallout from cyberattack

It has been more than two weeks since Ascension, one of the country's largest nonprofit health systems, was hit by a ransomware attack that still is causing widespread disruptions to patient care.

Since the cyberattack was detected on May 8, health care workers at Ascension hospitals and clinics in Wisconsin and across the country have turned to paper records, fax machines, phones and other ways of doing their job, while their access to the electronic medical records system, called Epic, remains cut off. Without that records system, health workers do not know patients' medical histories, what medications they are on, what allergies they have or other information critical for delivering them the right care.

Patients have been forced to deal with delays in treatment, canceled appointments, long wait times and confusion about how to contact their doctor or get prescription refills. They do not have access to MyChart, the portal used to check lab and test results, communicate with doctors and schedule appointments.

Ascension says it continues to work with cybersecurity experts to rebuild and restore its systems, though it is unclear when its systems will be fully back online. Its hospitals, clinics and other sites across Wisconsin and 17 other states remain open.

In a statement Friday, Ascension said it hopes "our patients and clinicians will see progress" after the weekend.

"Many of our vendors and partners have also started the process of reconnecting to our network and resuming services with Ascension, which should help to accelerate our overall recovery," Friday's statement said.

The Milwaukee Journal Sentinel asked patients to share their experiences with Ascension since the cyberattack and received dozens of responses.

Here's some of what they had to say.

Ascension cancer patients had radiation treatment delayed

Some cancer patients could not get radiation treatment in the weeks following the cyberattack.

Barbara, who asked that her last name not be used for privacy reasons, was recently diagnosed with breast cancer. She was scheduled to get her first round of radiation treatment on May 13, five days after the cyberattack was discovered.

But when she arrived at Ascension All Saints Hospital Cancer Center in Racine, she learned her appointment was canceled. Health workers could not access her and other patients' phone numbers to tell them because of their records systems being down, she said.

"It’s just being in limbo and then you start thinking the worst," she said.

Her radiation oncologist had been trying to get appointments for her and other cancer patients set up at an Aurora facility in Kenosha, but on Thursday, she got a call from the cancer center saying they had access to her records and could begin her radiation treatment on Wednesday.

She is relieved, she said, knowing that she will be able to begin treatment within the timeframe her oncologist recommended.

More: Ascension Wisconsin patients navigate uncertainty, delays and faxes in cyberattack's wake

Some Ascension patients' appointments still being canceled or postponed

Ascension hospitals, urgent cares and clinics are open and operating, though Ascension acknowledges that the system disruptions may cause delays and longer than usual wait times, according to official statements.

Amy Waldman, of Milwaukee, was scheduled to have a routine mammogram, a screening to check for breast cancer, on Monday at Prospect Medical Commons, the office across from Ascension Columbia St. Mary's Hospital-Milwaukee, but it was canceled, she said.

She was told she would be contacted when the clinic could reschedule routine mammograms, she said.

David St. John, of Grafton, had an appointment scheduled with a pulmonary medical provider at Columbia St. Mary's in Mequon on Wednesday. He said it was canceled because the provider couldn't see previous test results of his lung functioning, he said.

In statements, Ascension has advised patients to call before their appointments and to show up for scheduled appointments unless they hear otherwise. The health system has acknowledged that some appointments may need to be rescheduled.

Some patients struggling to get prescription refills

What used to take doctors seconds on the computer, now requires them to write paper prescriptions, fax prescriptions to pharmacies or call the prescriptions in. Because health workers do not have access to patients' medical records showing their current medications, they have to ask patients for the names of the medications and dosages.

Some patients reported they had prescriptions refilled with relative ease, but others said they had difficulty getting medications they need to manage their health conditions.

Evelyn Defatte-Singh, of Kaukauna, was not able to get in contact with her and her husband's doctor's office by phone earlier this month. She said she had to make repeated trips to the doctor's office to provide information about her husband's medications and to help resolve confusion between the doctor's office and the pharmacy.

"This is exhausting me," she said. "I know it's no one's fault. It's just cumbersome."

In statements, Ascension has advised patients to bring notes on symptoms to their appointments or hospital visits, as well as a list of current medications and the prescription numbers and bottles.

Longer wait times in emergency rooms and clinics

Some health workers and patients have reported long wait times at Ascension emergency rooms, hospital floors and other sites.

"Something that would’ve been a 10-minute consult with a patient is now 60 to 90 minutes and delays your care to them and to other patients," said Laura Crump, a respiratory therapist at Ascension St. Francis Hospital and a member of the union that represents health workers there. "It's a lot of searching in papers instead of 'click, click,' you know everything" about the patient.

Ascension acknowledges that patients may experience delays and longer wait times because of the records system is down as are systems used to communicate across hospital departments and to transmit X-ray and CT scans between departments.

Hospital workers are not able to communicate across departments like they used to, according to health workers. Emergency room staff have had to find other ways to get in touch with the radiology department and pharmacy, for instance.

What used to take a few clicks on the computer, now can take an hour. If a patient on the hospital floor at St. Francis needs respiratory help, Crump said, a doctor writes the order on paper. Then a nurse needs to see it and call the respiratory therapists, located elsewhere in the hospital, to alert them to the order, Crump said. Any breakdown in that process or a missed message can cause a delay, she said.

Delays in also getting labs, tests and imaging results mean patients may spend longer in the hospital, Crump said.

"Between the delay in getting results and just the lack of all of us having a whole-picture-type view on our patient, somebody who would’ve been on a ventilator for two days now might be on one for five days," she said.

Crump urged people to keep in their pocket a piece of paper with information on their current medications, allergies, medical conditions and any advance directives, such as do not resuscitate orders.

"If a patient comes in and they're not conscious, I don't know if they would want to be intubated to protect their airway or if they're a 'do not resuscitate,' " she said.

Other patients able to get procedures done

Amy Waldman, the woman whose routine breast cancer screening was cancelled Monday, said her husband was able to have cataract surgery as planned at Ascension Columbia St. Mary's Hospital in Mequon on the day after the cyberattack. His follow-up appointments have been mostly normal, she said, other than the use of paper records.

Don Daugherty, an Ascension patient, also was able to go through with a scheduled colonoscopy, a procedure that screens for colorectal cancer, on May 13, five days after the cyberattack was discovered. He said the procedure at Ascension Columbia St. Mary's-River Woods Parkway in Glendale went quickly and with no complaints.

"They knew what I was there for, and everything was set up," he said.

This article originally appeared on Milwaukee Journal Sentinel: Ascension patients still grappling with fallout from cyberattack