What happens when home care doesn't show up? A wife's battle

Helen and Richard Wickens are fighting to get the care they are entitled to. Photo / Laurilee McMichael

A Taupō woman cares for her husband 24/7 after his devastating stroke, and can leave the house only when a home carer arrives. Sometimes that crucial help doesn't turn up - cutting off a lifeline to the outside world that's crucial for her, and her husband's recovery.

Grey Power says the sad situation is common and widespread, and the Government needs to act over a system that is leaving many of our elderly alone and in distress. "People don't turn up when they're meant to," the group's national president Mac Welch said. "You seem to have to manage the provider yourself."

Helen Wickens looks after her husband around the clock, and the few times a home carer arrives each week gives her precious time out of the house.

However, sometimes nobody turns up - leaving a distraught Wickens alone to help Richard with intensive physiotherapy exercises needed for his recovery from a major stroke.

"Life is tough," she said of their situation. "I can't just think, 'I better zip to the supermarket and do this', because I can't leave the house. It's 24 hours. And then [the carers] don't turn up."

The Wickens, who live in Taupō, are funded for up to 21 hours of home care a week, to help Richard shower and complete his exercises, and let Helen get out for a shop or to attend her aqua and bike classes.

Wickens said no shows meant that in the week of December 15 they received 13-and-a-half hours support, the next week 11 hours, and the following week 12-and-a-half. Hours keep being missed, and the uncertainty that creates is as bad as the care not provided.

"They owe me 40 hours at the moment. And they say you have to [rebook] in the week it occurs. But they don't have the staff to come in for the extra time."

A low point came when she couldn't get Enliven, a Presbyterian Support organisation that provides home care across the country, to arrange for Richard to have respite care so Wickens could travel to the Kāpiti coast for their son's 40th birthday celebration.

"I rang crying and said, 'Well, obviously it is too hard to organise', and I just hung up. But they didn't ring back to see if I was alright...there was no apology. Nothing."

The couple have other adult children in Auckland and Wellington. Their life changed forever when Richard, who was training for a 100km bike ride, suffered a stroke while doing laps in the local pool.

Bystanders pulled him out of the water, and he was taken to Rotorua and then Auckland. He developed pneumonia and wasn't expected to survive.

"They didn't think he would last a night; that his heart was going to give out. But because he was so incredibly fit he survived. They took five litres of gunk out of his lungs, because I guess he had swallowed water in the pool.

"His left side is affected. He is starting to walk with a walking stick and provided someone is standing next to him...he has pushed and pushed himself. I am in awe of what he has achieved."

Wickens wrote to the Herald as she believes others are suffering the same problems, including those with other providers and in different regions. She worries organisations get public money even if services aren't provided.

"[Older people] complain to the support person, because that's who they see. But what they do is fantastic. It's management that needs a boot up the backside."

Associate Health Minister Jenny Salesa says an aged care commissioner is still under consideration. Photo / Mark Mitchell

A spokeswoman for Presbyterian Support Northern said they'd let Wickens know her complaint was being investigated urgently, and apologised unreservedly for the respite care issue.

"There are times when our support workers cannot fulfil their scheduled work. We do work extremely hard to find replacement staff, and for reasons that include staff illness or bereavement, this sometimes means a later than scheduled visit or on a small number of occasions that we cannot fully replace the scheduled visits."

The spokeswoman acknowledged a need for better communication and responsiveness, and said a new client management system was being tested to improve rostering and scheduling.

"Our support workers are incredibly hard-working and care for more than 3000 people across the upper North Island every day. We will continue to do our best to provide our clients with professional care and clear lines of communication at every point of contact."

Vanessa Russell, Lakes DHB's portfolio manager for health of older persons, said the DHB was aware of the issues and last week met with Enliven.

"What support [Wickens] is expecting to receive is different from what DHB purchased home based support services are contracted to provide, and a review of the client's support package may be required."

Grey Power national president Mac Welch said problems like those experienced by the Wickens were common across the country. Grey Power had lobbied for a standardised system and service across the country, with breaches policed properly.

"The mismanagement in the system is absolutely horrendous. The whole system needs a complete overhaul. Hospital boards are paying for services that aren't being provided, and the reliability of the providers is a nonsense."

Home care was "absolutely critical" to keeping people's lives together, Welch said, and the problems underlined the need for a new aged-care watchdog.

Both Labour and the Green Party went into the last election with policy to set up an aged care commissioner, and in September 2018 Associate Health Minister Jenny Salesa revealed she had asked officials for advice about doing so.

However, no action has been taken, and Welch said it was "another broken promise by this current government. And another sign that they really don't give a damn about the elderly."

In a statement, Salesa said an aged care commissioner and further regulation was still under consideration, and "we believe in older people being able to speak up and be heard".

A new framework for home and community support services between the ministry and DHBs will be released in the next couple weeks, Salesa said, and later this year new service specifications will detail how care must be delivered.

"We will be looking to ensure quality standards exist in staffing, consumer rights and complaints...critically, we're also improving the care sector through lifting wages [which will] make these important jobs attractive to recruit and retain great staff."