Queanbeyan desperately needs a respite care centre; terminally or chronically ill adults under 60 are entering nursing homes and palliative care. But one is being built, and will open next year.

Today, Respite Care for QBN announced its long-awaited centre, Yvonne Cuschieri House, had received $250,000 from leading health charity, the John James Foundation, for specialist medical equipment for chronically ill patients: hospital-grade beds, defibrillators, and oxygen.

“The cost of medical fit-outs are not insignificant,” JJF CEO Joe Roff said. “The equipment will ensure the client gets the proper medical care, in comfort.”

The JJF’s support was “a shot in the arm,” said Respite Care for QBN chair, Paul Walshe OAM. “Since we did the original cost plan, building costs have gone through the roof. To get $250,000 is magnificent.”

The six-bedroom centre will offer short-term accommodation of up to two weeks for 18- to 59-year-olds with terminal or chronic illness, so their carers can take a break, go on holiday, or have a couple of days off for their own mental health, Mr Walshe said.

“Carers work religiously, unceasingly, caring for someone with a chronic disease, and they need a break,” said treasurer Mary Loft. “It’s when they don’t get a break that they themselves get ill, and then the one they’re caring for has to go to hospital.”

The centre is the legacy of the late Yvonne Cuschieri OAM, founder of the Cancer Support Group (Rise Above), and will be named in her honour. Ms Cuschieri determined to build a respite care centre after her son Steven was diagnosed with a brain tumour in his early fifties, and his parents searched for respite care in vain. The only option was for Steven to enter a nursing home, and share a room with two elderly men (one 92, one 88) with dementia. He died in that nursing home from a brain haemorrhage caused by a fall, Mr Walshe said.

Queanbeyan woman Tascha Loadsman died last month from motor neurone disease, aged only 45. There was no respite care available for her; she had to take a room at Clare Holland House.

“It would be wonderful for me to have this facility here in Queanbeyan,” she told Mr Walshe. “I could give my husband, my sons, and my mum a little bit of a break, and I could share in accommodation with people my own age, not sitting in a palliative care unit getting respite in Canberra.”

Their cases were not uncommon. There is no respite for people with terminal or chronic illnesses aged between 18 and 60, Ms Loft said. While Ricky Stuart House or Emma Ruby House provide respite for children, adults are often taken care of in old people’s homes – even though the 2018 Royal Commission into Aged Care Quality and Safety recommended there should be no people under the age of 65 entering or living in residential aged care.

“A 20-year-old in with old people doesn’t work; they go downhill,” Ms Loft said. “Aged care is not the same as caring for young people with a chronic condition; it’s different.”

“Respite care at the very high end of the spectrum is lacking,” Mr Roff said. “You either have to go to hospital (and that can be difficult for people at times), or it’s very low-level residential care that’s not specialist in nature, and does not address the medical conditions that are prevalent in chronic cases.”

That, he argued, is why Yvonne Cuschieri House is so important.

“To have this high medical intervention, in a comfortable setting, that makes the patient feel calm and at home, is going to improve health outcomes. It’s a wonderful initiative.”

The centre will be built on a disused basketball street in Ross Street, Queanbeyan. The Queanbeyan-Palerang Regional Council has leased the block of land for 30 years at peppercorn rates ($450 per year). Workers will put shovels in the ground in the second half of the year, Mr Walshe said, and the facility will open middle to late next year.

The NSW and Federal Governments have each given $750,000 to build the facility, but Mr Walshe says it will need government support for running costs. It will cost more than $1 million a year to run the facility: $650 a night Monday to Friday, and more than $900 on weekends and public holidays. (A hospital bed in NSW costs $1,500 a night.) The fees will be minimum – in the ballpark of $60 (for pensioners) to $120.

“I don’t want to be standing here in 18 months’ time and saying this is our beautiful building – but unfortunately, we can’t open the doors because we don’t have any money to run it,” Mr Walshe said.

Although based in Queanbeyan, Yvonne Cuschieri House will serve Canberra and the southern tablelands health region as far as the coast.

“Once doctors realise it’s here, our six rooms will not be enough,” Ms Loft said. “We have room for expansion.”

Mr Roff said the JFF would be happily involved.

“A lot of people from the region come to Canberra to get their medical care,” he said. “If we can take that care to the regions, the JJF is very much onboard with doing that.”

The support from the Queanbeyan community has been fantastic, Mr Walshe said. More than 2,000 people signed Yvonne Cuschieri’s petition for the facility in 2017, including most of the local doctors, and former federal politicians John Barilaro and Mike Kelly backed it, too.

The campaign has continued after Ms Cuschieri’s death in June. More than 300 people came to a fundraiser ball last month; donation boxes in Queanbeyan clubs and pubs collect more than $1,500 each month; and local men have posed in the buff for a charity calendar.

“It just astounds me how this community gets behind projects, like Respite Care for QBN, and how wonderful they are in giving us the encouragement to continue this particular fight,” Mr Walshe said. “It’s not over yet.”