A family has described feeling "horrified" and "failed" after their 69-year-old relative was admitted to hospital three months ago weighing less than 40 kilograms and suffering from malnutrition, despite having in-home carers to help him with meals five days a week.
The family said carers' notes showed that Terrence "Sam" Donald's diet consisted mainly of tinned soup and sandwiches.
"It's become our nightmare … we didn't know whether he was going to make it," said Sam's sister, Vicki Donald.
Sam Donald was admitted to hospital in August after she and his niece, Tania Lowery, found him collapsed next to his bed in his unit in the northern Tasmanian town of Deloraine.
"I didn't realise he had lost so much weight, he was down under 39 kilograms we'd been told by the hospital," said Ms Lowrey.
"In emergency, we were virtually told it would be touch and go whether he would make it or not because of how malnourished he was, his stats weren't looking good," said Ms Donald.
She said her brother has been living with prostate cancer but she said she was told by doctors his weight loss was not related to his condition, he was "simply malnourished".
Ms Donald said she had not realised the extent to which her brother's health had deteriorated until he was hospitalised.
She said notes she requested from the in-home care service provider, Senior Helpers, frequently showed carers giving Mr Donald tinned soup and sandwiches for meals after concerns were raised about him choking on food.
"They were providing him with tinned soup which was annoying because we had homemade soup in the freezer for them which they could have quite easily thawed out and fed to him which had some nutrition in it," said Ms Donald.
Ms Lowery said she was providing meals of meat and vegetables and had also supplied a blender to make it easier for Mr Donald to eat.
"Lots of good stuff, but it just wasn't used."
'The house ... was a disgrace'
Mr Donald's carers visited his home five days a week.
They were to make sure he had one main meal, as well as ensuring he had something to eat in the evening. They were also responsible for cleaning the unit and helping Mr Donald with showering.
But Ms Donald said the day she found him collapsed in his unit it was apparent there were other issues as well.
"I was shocked," she said.
"It was a massive eye-opener. His clothes were just stained and disgusting. I'd say [he] hadn't had a shower for quite some time."
"The house … was a disgrace. It was just so dirty."
She said she accepts her brother might have refused help at times, "but there was no communication to us as a family that any of this was happening so to our knowledge everything was going ok".
When Ms Donald contacted the in-home care service provider about her brother's admission to hospital she was told the manager would get back to her.
"I am still waiting to hear from that manager. I was very disappointed, bitterly disappointed actually," she said.
She said the experience has had a big impact on her brother who has had to spend months in hospital.
"He's been out of his comfort zone, he's been agitated, he's got angry.
"He was failed, he was failed by the system."
Ms Donald and Ms Lowery were given permission by Mr Donald to speak about his experience.
"I just don't want anyone else to go through this, it's just not something that anyone should have to deal with," said Ms Donald.
"We're all going to get old and there's not going to be anyone around to care," said Ms Lowery.
Ms Donald also made a formal complaint to the Aged Care Quality and Safety Commission which has recorded 1,071 complaints about in-home services in the three months to June — a 716 increase for the same quarter the previous year.
The commission told Ms Donald it had been informed by the care service that the issues had been "documented and records indicate the concerns have been noted" and that it understood she "was satisfied with the assistance".
But Ms Donald said she was not satisfied.
"I just felt like my complaint was pushed under the carpet. I just felt like it really didn't matter and they were trying to just pacify me by saying we've put procedures in place, well they should have already been there."
The managing director of Senior Helpers, Dr Leonie Williams, said "complaints by clients and families are taken very seriously," but added the service provider was not able to comment on any specific client or incident due to confidentiality and privacy requirements.
"All complaints are respectfully received and acknowledged. The context of complaints is important as there are some issues that are not possible to amend.
"Support in the community is based on the funding available to individual consumers and rarely offers 24/7 support."
Older Australians reluctant to complain
Chief executive officer of Your Say Advocacy Tasmania Leanne Groombridge said her organisation gets "lots of calls" about substandard in-home care for aged and disability clients.
"They're mainly to do with neglect, lack of services, lack of communication, the fact that when services are engaged they don't turn up, or they don't stay for the contracted period," she said.
In one case, a person who did not get correct wound management ended up in hospital. In another, a couple kept having a shopping service cancelled and were "left with nothing".
She said the problem with in-home care could be more widespread because people feared the consequences if they complained.
"They don't want to go into care situations, they want to avoid institutionalisation at any cost," she said.
Ms Groombridge said people in regional Australia had few options to change carers if they were unhappy with the service.
"How on earth are you going to complain when you're limited to one? You haven't exactly got a choice where you can move."
As of March this year, 227,209 Australians had received a home care package.
From December 2022, a new aged care code of conduct will come into force which will provide greater oversight of home care providers.
A Serious Incident Response Scheme will apply to home care with reportable incidents including unreasonable use of force, unlawful sexual contact and neglect.
But Ms Groombridge said the problem of a lack of oversight of in-home care remained.
"As our clients say, unless you've got somebody on the ground actually going and monitoring and talking to clients … how is anything going to change?
"There needs to be more staff, there needs to be greater transparency and accountability and there needs to be services that want to deliver support to people in their home and to be genuinely focused on that."
The chief executive officer of the Council on the Ageing, Ian Yates, said as with residential aged care, the quality of in-home care providers varied.
"There are some absolutely world-class providers operating in Australia, there are a large number who are very good and then there are some who are really not up to it in our view."
He said further reforms for in-home care are due to be rolled out mid-2024 which will give consumers more control.
"That's an important step in shifting the power balance between the provider and the consumer."
