23 Jun 2016

Boy with Down Syndrome had 'diabolical' post-op aftercare, say family

5:15 pm on 23 June 2016

A Rangitikei couple has spent thousands of dollars of their own money to care for their young disabled son after a hip operation put him in a cast from his waist to his ankles.

Two district health boards are now investigating why the help that was promised by the five-year-old's doctors in Auckland never arrived.

Whanganui Hospital

The Mikkelsen family say their son's aftercare by Whanganui DHB was 'diabolical'. Photo: RNZ / Robin Martin

Anders Mikkelsen, who has Down Syndrome, had surgery a month ago to fix a dislocated hip caused by loose ligaments common among children with the disorder.

While his medical care at Starship Hospital in Auckland was described by his mother Deborah Mikkelsen as "outstanding" the aftercare provided by Whanganui was "diabolical", she said.

Doctors at Starship told the family Anders would only be discharged once the appropriate aftercare was in place. This was to be carried out by the Whanganui DHB, even though it was an hour and a half drive from their home.

"We were quite concerned the morning he was discharged that nothing was in place but the surgeon popped in and said 'we're sorting it all as we realise you're rural and have got no support'," she said.

Encased in a near full body cast and unable to fit in a car, let alone be lifted or carried, Anders was flown from Auckland to Whanganui in an air ambulance four weeks ago.

Wheelchair in a dark room

The family says they were given an unusable wheelchair and had to make their own out of a Mountain Buggy (file photo). Photo: 123RF

It was then that the family were told their order for a hospital bed, wheelchair and a hip spica chair - which allows someone in a hip cast to sit up unaided - had all been cancelled by the Whanganui DHB. They were also told the occupational therapist assigned to them would not be visiting.

"I couldn't believe my ears because we are in the ambulance driving home... and we've got nothing sorted for us at all," she said.

In a statement, the Whanganui DHB denied cancelling the order and the occupational therapist and said it provided what was requested by the occupational therapist at Starship.

The director of the DHB's allied health service, Kim Fry, said the equipment was left at Whanganui Airport for the family to take home to their farm but it was not picked up.

Mrs Mikkelsen said there was no equipment at the airport.

After a week of struggling to lift and care for Anders by themselves, and after numerous calls to the DHB, it sent an old hospital bed, a wheelchair and a car harness. None were fit to be used.

"So we hired a private hospital bed, which is fantastic. It's $60 a week - it was just essential."

They fashioned their own wheelchair from an old Mountain Buggy found in their shed.

"We've padded it with towels and fortunately the straps stretched enough to get him in," she said.

Struggling to care for Anders and with no response from the DHB, Ms Mikkelsen said she and her husband Phil felt they had no choice but to buy their own hip spica chair so he could sit upright unaided.

"What we were doing was hefting him out of bed as much as we could and he'd straddle across our laps to eat. It was uncomfortable but we have a three-year-old as well so if Phil went out on the farm and Anders was across my lap I could not move," she said.

They paid $2600 for the chair and the family have asked Whanganui DHB to reimburse them for that cost and use the chair for other children in the same position, but have not yet had a response.

"At that stage we started to get desperate enough because with Anders having Down Syndrome, lying on his back in bed, he can't play and he's losing his fine motor skills and his neck strength."

Anders had a rash from the pressure of lying on his back in the cast, she said.

However, when Mrs Mikkelsen ordered the chair, the company told her the DHB had asked for a quote for the same one two weeks prior.

The DHB later told her it was too expensive to buy or rent the chair. A suggestion of using a bean bag did not work because Anders was too big and heavy, she said.

But the DHB denied telling Mrs Mikkelsen the chair was too expensive and said it told the family it was willing to rent one before they bought theirs.

Requests made by the family's social worker and GP for home help have also been turned down by the DHB.

The DHB said the Taihape based social worker was waiting for a referral from Starship but visited the family anyway.

She asked for a district nurse to visit but that never happened.

Ms Mikkelson said the whole saga had been needlessly stressful.

The Whanganui DHB said it would be happy to visit the Mikkelsens to see if they need further support.

An occupational therapist has still not visited the family, three weeks after they returned home.