Latest News
In November 2024, two New Zealand women arrived at the same private clinic in Germany, to be operated on by the same 83-year-old surgeon for the same rare condition.
Sophie Roberts woke from surgery and could, for the first time in years, eat and drink without pain. Her seizures stopped, her bladder function returned. Within six months she had regained 20kg and was able to return to law school.
“My outcome from surgery was far better than we could ever have hoped, imagined or dared to kind of dream about,” she says.
Leah Kennedy woke to a very different outcome. She believes the surgery has left her worse off and she regrets her decision to go.
“He has kind of left me in a mess. And I recommend they don’t go to Germany,” she says.
The view from doctors is also split. Some say it’s a lifesaving surgery while others are skeptical it is even needed and question the diagnosis that leads patients down this path. Health New Zealand, which does not offer this surgery, warns the operation is experimental and dangerous, urging patients not to travel overseas for it.
At the heart of both women’s stories is a medical controversy with no easy solution. When does an experimental treatment become a breakthrough? And when does hope expose patients to unnecessary risk? These questions are dividing doctors and patients around the world.
The answers lie within a complicated, sprawling story that straddles the grey areas of medicine, science and humanity. It’s explored in the RNZ podcast and multimedia investigation All In Her Head.
A $200,000 chasm from diagnosis to treatment
Sophie Roberts and Leah Kennedy are among a growing number of New Zealanders diagnosed with the connective tissue disorder Ehlers-Danlos Syndrome (EDS) who are traveling overseas for the surgery Health New Zealand warns against.
They’re desperate to resolve painful, even life-threatening symptoms from abdominal vascular compression syndromes (AVCS), which some doctors link to EDS.
Leah Kennedy. Photo: RNZ/Nate McKinnon
There are four main types of this syndrome. In each, blood vessels are squashed, restricting blood flow to organs, causing severe pain, nausea and often an inability to eat.
All four are recognised in the medical literature, but there is debate about what some of them are, and how to diagnose them.
Having one is considered extremely rare. It is rarer still, therefore, that a person would have more than one. In fact, there is no scientific consensus on whether it’s even possible to have more than one, or whether they are linked to the most common type of EDS.
Yet, an increasing number of people with hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobility Spectrum Disorder (HSD) are being diagnosed with several compressions at once.
This has created a controversial chasm in treatment.
In New Zealand, procedures to treat all four main compression syndromes in the abdomen are technically available but doctors rarely perform them. Patients with an EDS diagnosis say they’re routinely blocked from accessing surgery that’s given to others without the diagnosis.
But surgery to fix multiple compression syndromes in a single operation is now being performed in several countries including the US, Spain and more recently in Australia.
Most New Zealand patients head to Germany to see vascular surgeon Professor Wilhelm Sandmann, who has been performing this operation on EDS patients for more than a decade. However, he has attracted criticism from his peers over patient safety concerns.
Sandmann is one of the few surgeons globally willing to operate on multiple compression syndromes in a single procedure, sometimes on all syndromes at once. In Canberra, vascular surgeon Dr Gert Frahm-Jensen has started performing the operation in the last 18 months. He takes a more conservative approach, treating up to three syndromes at a time, and only with patients over 17 years old.
RNZ
The chief executive of the Parliamentary Service is confident there will be enough room to accommodate the increased number of MPs and their staff coming into Parliament.
On current numbers, up to 131 MPs could be sitting in the Chamber following the election, brought on by a record overhang result.
Clerk of the House of Representatives Dr David Wilson told the Spinoff that currently the debating chamber had enough chairs to seat 124 MPs – including the Speaker of the House – and work was being done to accommodate more by altering the seating arrangement.
In a statement, Parliamentary Service chief executive Rafael Gonzalez-Montero said planning for a larger Parliament had been going for “some time”.
“Now that the election results have confirmed an increase to the number of members we are looking at several options.
“We are confident we will be able to accommodate all members within the Chamber.”
VNP / Phil Smith
Gonzalez-Montero said office accommodation for members and their staff would be “stretched” for a short time, but the new Members’ Building was only a few months away from “practical completion”.
That building – located behind Parliament – was due to be ready to occupy in April next year and had capacity to accommodate around 30 backbench MPs.
“All members should be in fit-for-purpose accommodation from that point,” Gonzalez-Montero said.
Following the 2023 election, 123 MPs sat in the Chamber – a record number at the time. That decreased to 122 following the resignation of National MP Judith Collins.
Collins held the seat of Papakura and stepped down in May and Parliament voted against holding a by-election because it was too close to the election.
The election result also meant high-ranking National Party MPs like Chris Bishop, Paul Goldsmith, Nicola Willis and Gerry Brownlee – Speaker of the House and an MP for 30 years – would likely not make it back into Parliament.
Only resigning or retiring MPs were permitted to give a valedictory speech meaning none of them would get the chance to give a valedictory statement.
Asked if their would be special allowances for valedictories, Wilson said in a statement that normally only MPs were allowed to speak in the House but the House could suspend its own rules or temporarily alter them.
“It could do so to allow former members to address the House.”
Wilson said no such arrangements could be made until the next Parliament opened and members sworn in.
rnz
Police say person who fired gun at officers still at large
New Zealand sides named for RLWC finals
Parliamentary Service working on extra chairs and offices for increased number of MPs
-
Latest News2 months ago‘Chilling’: Business groups speak out against National’s supermarket break-up plan
-
NZ News2 months agoTom Phillips report: The missed opportunities to find the children
-
Politics2 months agoNational vows to try to split Pak’nSave and New World
-
Latest News2 months agoCars bearing Chinese police markings stir unease in Auckland
-
Fiji News2 months agoPlans to have new Constitution by Dec 24th 2026
-
NZ News2 months agoCop who stole $68,000 can now be named as champion Muay Thai fighter Haimona Tamati-Te Paki
-
Politics2 months agoMBIE confirms botched biometric projects costs blown out to $50.7 million
-
Latest News2 months agoFive Karangahape Road venues lose their liquor licences after police intervention