A critical shortage of emergency respite and home care services is affecting the health and wellbeing of families and patients choosing to receive care in their own homes in Victoria's north-west.
Sunraysia resident Robert Hughes, who has multiple sclerosis and lives alone, was left without home care services for several weeks and was forced to rely on his brother to provide 24-hour care.
Due to his condition, Mr Hughes needs professional assistance for all his personal care needs, with his carers required to operate lifting machines and other specialist healthcare equipment.
In April 2020, Mr Hughes said he was informed by his then-provider that it was no longer able to offer its services to him.
He said this meant that his brother, who lives nearby, had to learn how to use healthcare equipment to meet his daily personal care needs until another provider could be found.
"On the last day of service the carer got me out of bed and set me up in my chair in the morning and by lunchtime they'd emailed that they had withdrawn any further support services," Mr Hughes said.
"I was shocked that I wouldn't have anyone to care for me. It was a very stressful time."
In a fortuitous twist, Mr Hughes's case manager called upon Mildura registered nurse Sandy Young for help, who then gathered a group of fellow nurses to help provide emergency care.
What began as a hopeless situation became the conception of what has become a successful nursing agency and respite service.
Answering a call to arms
Ms Young, who provides respite and in-home care to patients, said some families were waiting up to 18 months for non-urgent placements to give them a break from caring for their elderly or disabled loved ones.
The director of the Active Care Nursing Agency said she started the business two-and-a-half years ago in direct response to Mr Hughes's plight, which highlighted the needs of others in a similar position.
"I got called to arms by a nursing buddy [Mr Hughes's case manager] to help one of her clients who was left without any personal care services," Ms Young said.
"It took a team of about eight of us to provide his care; he was totally dependent on nursing care."
Mr Hughes said he was grateful for the services he receives, and liked to take credit for the success of the nursing agency that now supports his independence at home.
"I like to call myself the founding irritant for Active Nursing Care," Mr Hughes said.
Ms Young, who has 49 years of extensive nursing experience — ranging from intensive care to oncology and the RFDS — said nursing was her passion.
Active Nursing Care Agency now provides services in three states, and Ms Young said the business has recently purchased a purpose-built respite house in nearby Buronga to provide 24-hour respite accommodation care for the its growing list of clients.
"Our respite house provides emergency care and planned respite care through a support coordinator and registered service provider, to give carers a break while we provide care," Ms Young said.
Services not meeting demand
Toni Sullivan is the practice manager at aged care and disability service provider Loddon Mallee Annecto.
She said respite services had evolved over the years and now included at-home care, social support, meal preparation, emergency residential care and full care respite accommodation.
"Being a carer can be so exhausting, because you're having to care for yourself, and all the needs of the person in your care," Ms Sullivan said.
"Respite is about providing support to the carer, so that they have the energy and ability to do the other bits and pieces that their loved one needs."
Loddon Mallee Annecto has provided its 300 local clients with 29,000 hours of care support services this year.
"This support enables that family carer to be able to spend the time with their loved one, to do the things with them rather than having to focus on their physical care needs." Ms Sullivan said.
As availability of emergency respite beds in established aged care facilities was not always available at short notice, Annecto provides emergency respite for clients in hotel accommodation, with staff working shifts to provide the emergency care required.
For clients not funded through programs such as the National Disability Insurance Scheme (NDIS), the cost of emergency care is prohibitive.
Ms Young said respite and home care assistance was essential for those caring for loved one.
"Without it, carers experience burnout," she said.
"Carers provide care 24 hours a day; they don't get a break or get to go on holiday without the responsibility of looking after the person they care for, it puts the carers health at risk."
Carer fatigue a serious health risk
Ms Sullivan said carer fatigue was a significant issue that had serious repercussions for the wider health system.
"Potentially the carers will be the ones that end up going into hospital while their loved one then has to go into a facility-based care or have people come and look after them," Ms Sullivan said.
She said 24/7 options were not always available and it could be "really difficult to find emergency care".
'What some families go through would make you cry'
Ms Young and her team of carers have been working hard to expand their services, but she said said the reality was more needed to be done.
"It's horrendous, it really is," she said.
"What some families go through would make you cry.
"It's hard enough watching my staff go through it, let alone what these families are faced with if we weren't providing this."
She said the agency received enquiries from prospective clients in search of in-home or respite care services every day, but there was only so much her team can do in a day.
"It's tough, it really is tough, which is why I'm out there doing a tiny little bit, but it's just a drop in the ocean." Ms Young said.
