Source: Radio New Zealand
Some patients with a rare disorder experience complications and have to rely on feeding tubes, intravenous fluids and strong pain killers. 123rf
Health New Zealand has removed controversial recommendations that people suffering from a rare connective tissue disorder not be given certain treatments.
It follows criticism from patients and advocacy groups.
The new guidance on Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorder (HSD), published last week after what the agency described as a review of current evidence, said interventions including intravenous fluids, opioid pain relief, artificial feeding and vascular abdominal surgery were not recommended for people with EDS.
As reported earlier on Monday, patients and advocates were alarmed and angered the statements were misleading and potentially dangerous, saying some of the listed treatments are used in complex cases to manage life-threatening complications.
A Health New Zealand spokesperson confirmed the “not recommended treatments” section had been removed the guidance on its website.
“Health NZ is reviewing some of the website material, including the section you’ve referred to which has been taken down, pending review,” it said in a statement to RNZ.
Every Health NZ patient facing webpage included this disclaimer, it said.
Ehlers-Danlos Syndromes Aotearoa New Zealand (EDSANZ) chief executive Kelly McQuinlan earlier said: “It’s quite alarming that our own [health] agency can’t even provide the correct information.
“We’re already struggling to get the care that we need and this is incredibly damaging.”
McQuinlan told RNZ she was surprised to hear some of the information had been retracted, saying she had heard nothing from HNZ.
“I feel like what they have done is put a bandage to a much bigger problem. We still recommend these pages are temporarily removed until proper consultation has been carried out.”
EDSANZ has today written to HNZ asking for an urgent meeting to discuss the matter. It had been aware of the work being undertaken but HNZ had not responded to repeated requests for EDSANZ to be involved, she said.
It had also alerted the Health Quality and Safety Commission to the issue, she said.
RNZ is aware of at least two complaints made to the Health and Disability Commissioner over the information.
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– Published by EveningReport.nz and AsiaPacificReport.nz, see: MIL OSI in partnership with Radio New Zealand
