Covid 19 coronavirus: Katikati man with motor neurone disease in MIQ struggle

Adriann Richards said the double bed provided in MIQ is too low and has an unsuitable mattress, causing sleep deprivation. Photo / Supplied

A man with motor neurone disease says he is suffering sleep deprivation in MIQ after his application for a medical exemption to self-isolate at his Bay of Plenty farm was denied.

Adriann Richards, who says he may have as little as six months to live, claims managed isolation did not provide items he was promised and needed for his stay, such as the right kind of bed and appropriate equipment for using the toilet and shower.

The head of MIQ, Melissa Ross, said exemptions are rare to protect Kiwis and it was assessed that Richards' needs could be met during his managed isolation. She claims the requested equipment was provided and appropriate support is involved in his care.

Richards and his wife Vivian Rusman left their farm in Katikati, north of Tauranga, for England on December 8 to say goodbye to Richards' dying mother and 91-year-old father.

They applied for a MIQ exemption due to Richards' motor neurone disease, which impairs nerve supply to muscles and causes progressive muscle wasting and weakness.

Adriann said he was fit and healthy until 12 months ago, when he developed a limp. He was diagnosed with motor neurone disease in April and his condition had since rapidly deteriorated. He estimated he was a month away from becoming quadriplegic. There is no cure.

Adriann Richards and Vivian Rusman with their dogs Pip and Tui. Photo / Supplied

The couple began their 10-day MIQ stay at the Waipuna Hotel and Conference Centre in Mount Wellington, Auckland, on Tuesday.

Richards said when his exemption was declined, he was told MIQ could provide for his needs. Rusman requested a hospital bariatric bed - wider than normal - with a rippled mattress, and a high toilet and shower bench for him

"We basically haven't got any of that," he said.

Their room had a single-width hospital bed, which they say is dangerous for him as it forced him onto his back, which could lead to asphyxiation in his sleep. He had to make a conscious effort to breathe due to muscle weakness.

"As soon as I start to fall asleep, my oxygen levels start to drop off and I slip off into unconsciousness rather than sleep and then from there on I'm on the course of death," Richards said.

Adriann Richards says the hospital bed provided is too narrow and he can only sleep an hour at a time. Photo / Supplied

Rolling onto his side in the narrow bed took about 20 minutes and exhausted him. He needed his wife's help to turn, so neither had slept more than an hour.

He said he called a nurse on the second night and explained the bed situation and asked her to monitor him sleeping because "it's life or death". He said she checked his levels and left him with an oxygen monitor on his finger, which would alert staff if his levels dropped.

The room also had a double bed but he said it did not have the rippled pressure point-reducing mattress he needed. He said the normal mattress felt like lying on the "contents of a toolbox" and caused sleep deprivation.

He said he was initially given a wheelchair commode that did not fit over the toilet. This was replaced.

A commode provided that did not go over the whole toilet, the couple says. Photo / Supplied

The commode, double bed, and shower bench were all too low for him, and his mask exemption was not accepted at the facility, he said.

Rusman said: "[MIQ] rejected our application for exemption because they said they could guarantee all the facilities and 24-hour nurse care."

In her view: "[MIQ] don't look at the individual and the needs."

The couple had re-applied for an exemption but Rusman questioned how MIQ could assess an application without seeing the person in the first place.

"I think it's wrong ... they should really do an individual assessment and not an assessment on paper because that's impossible to do."

The shower bench provided was too low and had only one handrail. Photo / Supplied

The couple said if everything promised had been granted, they would be fine being in the hotel.

"I've probably got less than six months to live," Richards said.

"It's a life or death thing for us.

"What I don't understand is if we're not suitable for an exemption to MIQ, who is?"

He said, in his view, the Government and MIQ system was "willfully ignorant".

Melissa Ross, head of MIQ operations, said Richards' application for a medical exemption to isolate at home was declined by the Medical Officer of Health after close consideration.

A security guard stands outside the Waipuna Hotel and Conference Centre MIQ facility in Mt Wellington in 2020. Photo / Sylvie Winray

"It was assessed his health and care needs could be met while in managed isolation. All the appropriate supports are currently involved and are working on how to best support Adriann while in isolation."

She said a range of health professionals were supporting him in MIQ either on-site or being consulted, "to make his stay as comfortable and safe as possible".

"While the equipment requested for his care is in his room, including a hoist and standard hospital bed, we are advised Adriann is declining to use the hoist.

"We have also recommended he be admitted to an Auckland hospital where he could receive more comprehensive care. Adriann has declined this option."

She said he submitted another exemption request on Friday night.

"We are continually reviewing our processes and systems to ensure they are fit-for-purpose, and will ensure we do so with this particular case."

Ross said decisions about exemptions from managed isolation were not easy.

"We sympathise with people who are in distressing situations who apply for exemptions. We need to balance each individual application with our critical work to ensure the safety of all New Zealanders."

The threshold for exemption approval was high and based on confidence of low transmission risk. Just 11 people had been approved for home isolation since July 2020.

She said each medical exemption application was considered by an independent and external health adviser, to determine whether the medical needs of the applicant can be supported in MIQ.

"Managed isolation facilities are equipped to handle most medical needs, unless hospital admission is required."

Richards denied he was declining to use the hoist and said he did not want to go to hospital because, in his view, it would mean moving from one inappropriate bed to another. If he had an appropriate bed, he would not have high care needs, he said.

CCS Disability Action chief executive Mel Smith said the couple were the experts in Richards' health and disability-related needs, and "the system clearly isn't allowing them to be the experts in a MIQ facility".

"Disabled people and people with high and complex health needs would have already tried and tested everything to get to the thing that works for them.

"To give them a substitute for whatever it is that they've tried and tested and they know works for them really isn't listening to them."