The number of sanctioned nursing homes has increased significantly this year, as the government ramps up scrutiny on the sector and has introduced unannounced audits.

But for some, the sanctions have come too late.

Joanne* has spoken to HelloCare about a nursing home that was sanctioned this year, where her husband, John,* spent some time before he sadly passed away. The factors that led to the recent sanctions were also affecting care when John was there some years ago.

Joanne and her family made several complaints at the time, but neither the facility nor the authorities took any meaningful action.

For Joanne to learn the facility has now been sanctioned, years after she experienced first-hand its inadequacies, is frustrating.

Do families need a way to escalate their concerns about aged care quality, when they feel their loved one is at risk and their complaints are not being acted upon?

The move to aged care

When John was first diagnosed with frontotemporal dementia, Joanne initially cared for him at the home in regional Victoria. She worked three days a week, but was determined to do the best for him.

But as time went on, his condition deteriorated, and the situation came to a crisis point when Joanne herself experienced an injury that put her in a Melbourne based hospital for weeks.

With minimal planning, John moved into a local nursing home, a period during which Joanne, who was still in hospital, said she was extremely worried for his wellbeing.

When Joanne returned home, she initially couldn’t drive, and had to rely on others to take her to visit John. She went twice a week for around an hour each time, but said it was difficult to get a sense of what was really going on at the facility, but she did have concerns.

As time went on, Joanne regained her ability to drive, and was able to visit John more often. A worrying situation began to reveal itself.

Problems became clear

John was in a special dementia section of the facility with 30 other residents, but Joanne said there were only “limited” numbers of staff to care for them.

One night, staff at the facility called Joanne three times during the night to let her know that John had fallen out of bed. Joanne and her family requested he be given a level bed, but was told it wasn’t possible, they couldn’t even hire one.

About a year after John went into care, Joanne arrived to visit and a staff member told her that the previous day another resident had pushed John over. John hadn’t been out of bed at all since then, and it was already after 4 o’clock in the afternoon.

Obviously concerned, Joanne couldn’t rouse her husband. She called for a doctor, who also couldn’t wake him.

The decision was eventually made to take John to hospital, where it turned out he was severely dehydrated. He remained in hospital for three days. During that time, a doctor at the hospital commented on a rash John had, but nothing was done about it.

John returned to the aged care facility, and was confined to his bed. He developed difficulties eating, and a speech pathologist came to see him. She trained staff how to feed him properly.

When the facility’s doctor asked staff to record how much John was drinking, they didn’t, saying they didn’t have the time.

Joanne was terribly worried about John. She visited every day. She fed him herself, not even able to trust staff to feed and hydrate him.

One evening, Joanne observed there wasn’t enough food to feed all the residents in the dementia section, so staff had to hurriedly cobble soup together from a mix.

Regularly, only three staff were on duty to give residents – 30 residents with dementia – their evening meal.

When staff called in sick, they weren’t replaced.

Every day, Joanne said she found it impossible to know when was the right time to go home; she was always worried John might die if she left.

Staff at the facility began having trouble keeping John in bed. Their solution was to move his bed to a common area, near a residents’ sitting room where staff could observe him at all times. Soon afterwards, John developed pressure sores.

John’s bed remained in the public area, day and night, until two weeks before he died.

Scabies rife

A few months later, almost every staff member and resident in the facility, and Joanne herself, had developed the same red, itchy rash that John had, and it was eventually determined they all had scabies.

Joanne had previously worried about hygiene at the facility, having observed carers failing to wash their hands after cleaning wounds. The scabies diagnosis confirmed her fears.

John’s pressure sores contained scabies, and he was extremely uncomfortable.

Morphine was prescribed, and given to him, but no record was made of it being administered. Again, Joanne despaired at the lack of systems at the facility.

Sadly, John passed away the following month.

Complaints weren’t acted upon

When John was in care, Joanne said she and her family made a number of complaints, but they never received an adequate response.

They complained to the Aged Care Complaints Commission, as well as the manager of the facility itself, but nothing was ever done.

Joanne said her experience of John’s care was “frustrating and really sad.”

Should families be able to ‘escalate’ complaints?

Here at HelloCare, we all too often hear of families feeling their complaints about poor care are not appropriately acted upon. This ‘gap’ has led us to wonder if families should be given a way to ‘escalate’ their concerns.

In 2014, a system was introduced in Queensland in which families can either themselves, or through a nurse, ask that their case be reviewed. The system is called ‘Ryan’s Rule’, and is named after a boy who died when an infection wasn’t picked up in hospital.

Ryan’s Rule applies when you have raised concerns that your loved one isn’t responding to treatment as expected, and you would like your case to be reviewed.

First you must inform a nurse, then you must inform the nurse in charge of the shift. If you are still concerned that you have not been heard and the condition of the patient continues to deteriorate, you can activate Ryan’s Rule, and either yourself, or with the help of a nurse, can call a number that will activate a clinical review of your case.

Would a similar system be useful in aged care? What do you think?

* Names have been changed.

Please note: the image used to illustrate this article does not represent actual people or incidents.

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