When their father arrived at emergency he couldn’t sit or stand unsupported. Medical staff told Nadia and Tania he hadn’t had a stroke. They said an MRI was needed but couldn’t be undertaken because his pacemaker was not MRI compatible.

Their father was transferred to a ward where they were expected to shower and support him, because “they were his carers”. Tania advised nurses of her recent back injury and Nadia’s high risk of falls due to Multiple Sclerosis. Still the nurses didn’t intervene or advise how to manage these new symptoms on top of his dementia.

For several days the sisters pressed for their dad to have an MRI but medical staff couldn’t locate notes relating to his pacemaker, even though it had been inserted at the same hospital. Frustrated, Nadia contacted the pacemaker company herself, who confirmed it was MRI-compatible. The eventual MRI showed he’d had a stroke, and his balance was unlikely to recover. It was the first of many battles they would fight in ensuring adequate care for him.

‘We did all we could to close the communication gap between hospital departments. We saw time and time again the failures in communication between departments jeopardise Dad’s safety,’ Tania says.

They spoke at staff meetings, to medical, nursing and allied health staff, to share their point of view. Tania explains that they found themselves playing “good cop” and “bad cop”.

‘She smoothed the waters, asking naïve, intelligent questions. On the other hand, I did what I could to address issues and wouldn’t hold back in escalating them.’

Having a nursing background, Tania knows how stressful hospital environments are and how much pressure staff are under. As a nurse, she’d worked hard to ensure high quality care and standards for patients and families, but before now she hadn’t understood the anger many carers showed.

‘Here I was on the other side; I was grieving and being let down at every turn.’

Tania and her sister found themselves supporting other carers in the hospital. If they overheard difficult discussions between staff and families through the curtains, they encouraged carers to protect, defend and advocate. They supported them to understand their rights as carers, to be listened to, and to listen to their own instincts.

With all she’s learnt on both sides of the hospital system, Tania urges other carers to speak up if they have any concerns or questions.

‘Start by discussing concerns directly with the staff member involved. The matter can then be escalated to the nurse manager or person in charge for the shift. After hours, you can escalate matters to the nursing supervisors. If the concern is medical, ask to speak with the registrar. Consultants are also available to answer questions during their rounds, and although they have limited time, you can ask them to return later if you need to discuss things in more detail.

‘Keep going until you find the care the person needs to be safe and cared for properly. In the end, you will know you acted with love.’