Response to RadioNZ story regarding Anders Mikkelson post-op care

Whanganui DHB statement issued 30 June 2016:
The Whanganui District Health Board has confirmed that two senior staff members visited the Mikkelsen family today at their home in Taihape and, that a full and frank conversation had taken place regarding the Mikkelsens’ complaint about the aftercare provided to their son Anders.
WDHB chief executive Julie Patterson says it’s  very clear that the Mikkelsens’ understanding of what would happen following Anders’ discharge from Starship Hospital did not match the WDHB’s understanding of its responsibilities and what they had been requested to provide by Starship Hospital.
The WDHB is satisfied that Starship Hospital’s discharge process and assessment of Anders’ needs was appropriate. “But with three DHBs involved in the care of this child and several different agencies being approached by the family, this has to led to confusion and problems with the timeliness of the WDHB’s response,” Mrs Patterson says.
“Because the family was  discontented with the equipment offered as a result of the Starship assessment, they chose to purchase their own equipment
“The WDHB has undertaken a further assessment of Anders’ functional needs and is awaiting the outcome.”

On 23 June, RadioNZ published a story regarding the post-operative care of Anders Mikkelsen. The article made a number of incorrect claims and did not consider both sides of this story. Here we provide our statement issued to RadioNZ, the RadioNZ story with our response to these claims included, and a timeline of events.

We provided RadioNZ with the following statement:

Whanganui Hospital’s Occupational Therapy (OT) Department received a request from Starship Children’s Hospital to provide Anders Mikkelson with a 16’’ wheelchair and E-Z-On Harness on discharge to WDHB.  Starship Hospital OT advised us to contact the family to arrange collection and delivery of the equipment. On 31/05/2016, WDHB OT was contacted by the mother requesting a hospital bed and hip spica chair. Mother also informed the department that the wheelchair was not suitable.

Our OT contacted Starship Hospital OT to check on this and was advised that the patient doesn’t require a hospital bed and they were going to seat Anders on bean bags or their legs when feeding him. During that time our Loans Equipment checked with Palmerston North Hospital to see if they had any hip spica chairs. They also called DME in Auckland to check the cost of hiring if needed.

The WDHB OT Department went ahead and organised equipment as requested. The equipment was left at Whanganui Airport for the family to pick up on their way home. This was communicated to the family. This pick up did not happen.  We received a message from the family on 01/06/2016 advising that the equipment had not been delivered.  Following phone calls with the family the WDHB sent therapy assistants to Taihape on 3/06/2016 to deliver the equipment.

The WDHB did not place an order for the hip spica chair as it was not part of the equipment requested from Starship Children’s Hospital. There was no order and therefore no cancellation of the order.

When a patient is transferred from another DHB, we trust the recommendations from the referring OT and put in the equipment they request. We do not send another occupational therapist to change the equipment.

The WDHB wishes to make it clear it would require an assessment of functional need before recommending a hip spica chair for Anders. Our manager did not say the WDHB wouldn’t purchase due to the expense. The WDHB has a policy of providing patients with equipment which meets their needs, which may differ to what a family wants.

The Starship OTs had recommended that Anders use a bean bag for the three months and we accepted their recommendation.

The WDHB will be contacting the Mikkelson family to invite them to meet with us to discuss their concerns. We have a policy of inviting patients and their families to contact the DHB if they are not happy with the care they received. We regret that this did not happen with the Mikkelsons. We will offer to visit them at their Taihape home and part of this visit will be to see how they are coping and if they require further support.

Kim Fry
Director of Allied Health
Whanganui District Health Board

Click here to view the timeline of events

Radio NZ article
Boy with Down Syndrome had 'diabolical' post-op aftercare, say family
Anusha Bradley - @AnushaBradley

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.
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.
Whanganui DHB comment:
The referral from Starship to the WDHB was for an OT only. No referral was received for social work to organise home help or for weekly district nurses visits. The referral was received 30 May and Anders was being discharged on the 31st so the WDHB was given one day to organise equipment.

"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.
Whanganui DHB comment:
WDHB, with one day’s notice, arranged for a wheelchair and harness (as per the Starship OT’s referral) to be at Whanganui Airport when the family arrived back from Auckland. The family was contacted by the WDHB to advise the equipment would be at the airport for them to take back to their home near Taihape. The WDHB was informed the next day that the equipment was still at the airport so we arranged for it to be delivered to their home on 3 June. The parents said they couldn’t find the equipment at the airport.

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.
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.
Whanganui DHB comment:
This is untrue. Acting on the Starship OT’s assessment, the WDHB had ordered the wheelchair and the harness. It was Anders’ mother who wanted a hospital bed, and hip spica chair. She told our WDHB OT that she wanted these additional pieces of equipment – it was explained that the WDHB needed to carry out an assessment if there was a functional need for them. The WDHB and Starship OT had a discussion and concluded that the wheelchair and harness were appropriate.

They were also told the occupational therapist assigned to them would not be visiting.
Whanganui DHB comment:
The WDHB had no OT available to visit the first week that the family was home. Following a conversation with the mother, the WDHB’s Clinical Therapies Manager arranged for the equipment left at the airport, and the hospital bed to be delivered on Friday 3 June.

"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.
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.
Whanganui DHB comment:
The family arrived home on the Tuesday afternoon and the equipment that had been left at the airport was delivered on the Friday. This is not a week.

"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.
Whanganui DHB comment:
On 10 June, a physiotherapist and technician visited the family at home and completed an assessment. The family informed the physio and technician that they were going to purchase a hip spica chair. Following their assessment of Anders’ needs, the two WDHB employees responded that the WDHB would hire hip spica chair but the family replied that they would purchase the chair anyway. Due to the cost, the Therapies Manager approved for the chair to be hired but not purchased. This was explained to the family by the WDHB staff who had assessed Anders.

"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.
Whanganui DHB comment:
That’s correct. The WDHB had looked at hiring it.

The DHB later told her it was too expensive to buy or rent the chair.
Whanganui DHB comment:
The WDHB denies having said it was too expensive to rent. We were willing to rent one and told the family that we were.

A suggestion of using a bean bag did not work because Anders was too big and heavy, she said.
Requests made by the family's social worker and GP for home help have also been turned down by the DHB.
Whanganui DHB comment:
This is incorrect. The Taihape-based social worker was waiting for a referral to come through from Starship and when it didn’t, she visited the family and seeing their distress, asked one of the district nurses based at Taihape Medical Centre to visit the family that day and once a week from there. This has happened. A referral from Starship for social work and district nursing was never received so WDHB staff took it upon themselves to step in and provide it.

Ms Mikkelson said the whole saga had been needlessly stressful.
Whanganui DHB spokeswoman Sue Campion told RNZ News it would respond to the Mikkelsen case today while Auckland DHB spokesman Mark Fenwick said it was also looking into the matter.
"Thank you for bringing this to our attention. We have contacted the Mikkelsens and are going to work with them and their local DHB or care providers on what's best for Anders," he said.