A family struggling to care for their 5-year-old boy after an operation say the Whanganui District Health Board has let them down.

The farming family from Taihape have spent thousands of dollars on equipment for their Down syndrome son - who is in a cast from his waist to his ankles - claiming equipment provided by Whanganui DHB was unusable.

Anders Mikkelsen went into Starship Hospital in Auckland for a hip operation a month ago. The operation was to fix a dislocated hip caused by loose ligaments, a common effect of Down syndrome.

The operation put both Anders' legs in a cast, from his waist to his ankles, and his parents, Deborah and Philip Mikkelsen, were told aftercare for him would be provided by Whanganui DHB.


However, the family live in Mataroa, a village near Taihape and a 90-minute drive from Whanganui Hospital.

Because of the cast, Anders couldn't fit in a car or be lifted or carried, so he was flown home in an air ambulance.

A wheelchair and harness for Anders were delivered to Mataroa by health board staff, but the family said neither was suitable.

Instead, the Mikkelsens made their own wheelchair out of a pushchair they found in their shed, and worked out a way to take Anders in their car.

Mrs Mikkelsen then asked for a hospital bed and hip spica chair, a special piece of equipment that would allow Anders to sit up without help.

A hospital manager decided to send a hospital bed and bedside table to help with sitting. But by the time it arrived, the family had hired a private hospital bed for $60 a week, according to a Radio New Zealand News report.

The hospital also sent another wheelchair and hip spica trolley, but the wheelchair was not suitable and the trolley too small.

The family decided to buy their own hip spica chair, costing $2600, so that Anders could sit upright without help. Otherwise he has to straddle across their laps in order to eat.

They have had it for a week and Mrs Mikkelsen said they couldn't function without it.

They would like the health board to reimburse them for the chair, then keep it to use for other patients.

Mrs Mikkelsen described Whanganui DHB's aftercare as "diabolical", RNZ News reported.

However, the DHB's director of allied health, Kim Fry, said it had provided what Starship Hospital recommended, and its records showed it had tried to help the family.

Ms Fry said Anders would have to be assessed as needing the hip spica chair before the health board would provide it. Starship had suggested sitting him on a beanbag to be fed.

The board was willing to hire a hip spica chair if that proved necessary. It could also provide a remote-controlled bed.

Mrs Mikkelsen wanted her son assessed by an occupational therapist but said she was told the occupational therapist covering the Taihape area was not scheduled to visit for a week, and that Anders was not a Taihape social-work client at the time, but he would be followed up.

Caring for Anders as well as their 3-year-old child has been difficult for the family and grandparents from Turangi have been coming to lend a hand.

Anders will be in the cast for another two months and the family is getting desperate. Mrs Mikkelsen said her son couldn't play and was losing fine motor skills and neck strength.

The health board is due to contact her and send staff members to the house to discuss the family's concerns and see whether they need more help.

Mrs Mikkelsen said she would like an apology, reimbursement for the hip spica chair and the occupational therapy assessment that she asked for.