Down the phone, the man’s words spilled out in a wave of anger and concern.

“She’s in hospital,” he explained, distress sharpening his voice as he described what was happening to his beloved wife.

“She wasn’t allowed to inject her own insulin. It wasn’t being given at the right time. Her blood glucose levels weren’t being tested often enough. She collapsed because she wasn’t getting her meds on time. They’ve had to rush her to emergency.”

This was the worrying story one man shared with the Policy and Advocacy team at Diabetes NSW & ACT.

The team’s job is to speak up for the specific needs of people living with diabetes to help remove hurdles that make their lives harder.

Managing diabetes while in hospital

In hospitals, staff are required to manage and administer all medicines. This means people living with diabetes are not permitted to inject their own insulin or check their blood glucose levels during their hospital stay.

The intention behind this requirement is to keep people safe. But if a person needs insulin and it’s not administered at the correct time, this can impact their immediate physical and emotional health.

You can imagine the anxiety and helplessness people feel when they lose control of their treatment and their body. Especially when they know the serious harm this can cause.

Staying on a diabetes diet is yet another challenge for people in hospital, because they have little or no say over what they eat, when and how much.

One million people who visit Australian hospitals each year have diabetes. Meaning 10% of hospital stays are people living with diabetes. They are relying on staff to manage their condition – in addition to the illness that is the reason for their stay.

For children aged 14 and under living with type 1 diabetes, the hospitalisation rate is a huge 40%.

Our advocacy services

When someone comes to us with stories of diabetes management in hospital, Rebekah Henricksen, Policy and Advocacy Manager, is the person who champions the cause.

She hears from people via calls to the Helpline, emails and social media. In collaboration with other organisations, recurrent issues like this one are raised with the decision-makers in government so they can be actioned for policy change.

“It’s not unusual to receive six to eight calls a day from people who are concerned about the issues that surround their diabetes, and hospital care is a frequent concern,” says Rebekah.

“Isolation is most commonly reported to us; people just feel like they’re doing it alone.”

“People usually tell me about their problem in hospital by telephone and they are very upset. Often people come to me in the late stages when a problem is already complex and serious.”

“Most of our hospital-based advocacy is more on the individual level, largely because of the urgency of the circumstances. We guide people through the proper process for complaints.”

“It’s about finding a mutually agreeable path, helping people living with diabetes to get what they need. After our support, people generally don’t feel the need to contact us for more help.”

Tackling obstacles for people living with diabetes

Rebekah is involved in stakeholder working groups and committees, and makes submissions and contributions to legislation whenever there is an opportunity.

They’ve been raising the issue of diabetes treatment in hospital with representatives within the health system. The great news is that health and other departments have now made it a priority to improve inpatient management of diabetes.

“Ultimately, our aim is to tackle the obstacles that make a person’s day-to-day life with diabetes difficult,” says Rebekah.

“Diabetes is a medical diagnosis, but it comes with a whole raft of other issues, largely as a result of the fact that people don’t understand diabetes. My aim is to tackle those issues: discrimination, isolation, access to services; and bring diabetes back as close as possible to simply a medical diagnosis.”