Dr Wilhelm Sandmann charged with negligent homicide as reported in Der Spiegel, November 2024 and Rheinische Post, December 2024
Composite photo / NZME
Dr Wilhelm Sandmann charged with negligent homicide as reported in Der Spiegel, November 2024 and Rheinische Post, December 2024
Composite photo / NZME
At least 20 NZ patients with rare conditions have travelled to Germany for surgery.
Some patients say the surgery was a great success, while others are more sceptical.
An 82-year-old surgeon - Professor Wilhelm Sandmann - has now been accused of negligent killing and negligent harm.
A German surgeon who has treated more than 20 New Zealand patients with rare conditions is facing charges of killing one patient and severely harming another, local media have reported.
A group of patients, mostly young women, have travelled to several countries including Germany fordiagnosis and treatment over the last five years, often crowdfunding up to $200,000 for the treatment and related costs.
Most of them have been diagnosed with a form of Ehlers Danlos Syndrome (EDS), which affects the body’s connective tissue, or compression syndromes, in which blood vessels are constrained.
They are part of a complicated, fraught battle occurring within New Zealand’s health system, in which officials and doctors are concerned about patients taking drastic measures but are not always able to offer them a satisfactory alternative.
The battle has divided families and is playing out in specialist rooms, GP clinics, social media, and crowdfunding websites.
The patients who were treated in Germany say they felt forced to head overseas because of the absence of compassionate, responsive treatment in New Zealand.
Some of the patients, along with their supportive doctors, say their operations overseas were successful and life-changing.
Specialists and medical societies in New Zealand, however, say the diagnoses in Germany are unusual and the surgery is experimental and highly risky, especially for young women who are often underweight.
At the same time, they concede that the consistent, multi-disciplined approach needed for diagnosing and treating EDS is not yet fully in place in New Zealand.
The Herald reported last year that two New Zealand medical societies had flagged concerns about the operations being performed overseas.
Many of the patients were treated by Professor Wilhelm Sandmann, who works at a private clinic in Düsseldorf.
An English patient, Catherine Moore, died in 2018 after multiple surgeries with Sandmann.
He has also been charged with negligent bodily harm in another case.
In both cases, he was accused of operating “without medical indication” - a valid reason to perform surgery - Der Spiegel reported. The charges were laid in 2022 but were not publicly reported until the newspaper’s investigation.
The newspaper notes that the case was on hold because of missing evidence and it was not yet clear whether it would go to trial.
The report also cited vascular surgeons who said treatment costs at the German clinic were “immoral”, with patients paying E3600 (NZ$6800) for an examination alone.
When contacted by the Herald, Sandmann referred questions about his court cases to his lawyers. He pointed out his many successful surgeries and other achievements in his 40-year career in the public and private sector and universities.
A father, who spoke on condition of anonymity, told the Herald that last year he had laid formal complaints against the New Zealand doctors who had referred his daughter to Sandmann and another Germany-based doctor, Professor Thomas Scholbach.
His daughter was diagnosed with an eating disorder in her teens and later developed multiple, unexplained symptoms.
The father believed a diagnosis from a multidisciplinary team was required but his daughter took another path, referred by two New Zealand-based specialists to Germany – despite his serious doubts.
The father said he was troubled at the speed at which she was diagnosed with EDS, referred to Scholbach and then underwent invasive surgery performed by Sandmann, which appeared to involve an incision from sternum to pelvis.
Recovery from surgery has been prolonged and it was not clear whether her quality of life had improved.
“For all young women afflicted with eating disorders I just want there to be a pause in this unproven referral process,” he said.
“A reasonable and considered medical alternative must be considered in a multi-disciplinary setting.”
A Health NZ spokesperson said the organisation did not keep track of patients who had travelled overseas for surgery as they did so independently.
“However, we are unfortunately aware of reports of patients who may have been harmed after seeking treatment overseas.”
Some patients and their families say they went overseas for diagnosis and treatment because they had struggled to find the integrated, multi-speciality care they needed here.
The path to diagnosis can be long and treatment may require co-ordination between gastroenterology, rheumatology, vascular surgery, radiology, immunology, genetics, allied health, psychology and cardiology.
Health and Disability commissioner Morag McDowell alerted health officials to the problems patients were facing last year. Photo / Dean Purcell
In May, Health and Disability Commissioner Morag McDowell wrote to the Ministry of Health and Health NZ leaders, saying she had received a cluster of complaints from patients with severe gastrointestinal and other symptoms - many of them who said they had EDS or compression syndromes.
Patients found that they were met with varying opinions from clinicians about their diagnosis and best course of treatment and a lack of co-ordinated care between specialties, which led to delays in care.
While delays were inevitable when dealing with rare conditions, the systemic issues in the health sector meant some consumers had not received a “person-centred or compassionate care” approach, McDowell said. While poor mental health was common among patients with these conditions, some patients had significant physical symptoms “misattributed” to mental health conditions.
Health NZ is working on two initiatives in this field. The spokesperson said that in the absence of internationally agreed standards of diagnosis and management, Health NZ was reviewing the best evidence available to inform its next steps.
“It is vital that we get this right,” they said.
Some families the Herald spoke to believed that robust standards were already available and were frustrated with the pace of Health NZ’s progress.
Health NZ is also assembling a multidisciplinary panel to advise on “very rare” vascular complications in EDS and other conditions. It was hoping to make an announcement about the panel in the next few months.
The role of social media and crowdfunding sites in persuading patients to travel overseas is also coming under some scrutiny.
Der Spiegel reported Moore’s doctor saying that she had been deeply involved in Facebook groups, which encouraged her to visit the German doctors. Her husband said she had been “lured into a trap” and given false expectations.
The Health NZ spokesperson said: “While social media can be a force of good for the dissemination of healthcare information and patient empowerment, it can also be very difficult for people to work out what information is safe and evidence based”.
EDS patients have been unsuccessful in applying for Health NZ funding to get treatment overseas and have instead turned to crowdfunding websites like Givealittle.
Professor Day said members of the gastroenterology society had reported concerns at the ethics and responsibilities of these fundraising pages, given the experimental nature of the surgery, reports of harm, and the vulnerability of the individuals involved.
A Givealittle spokesperson said the company did not make judgements on the appropriateness of individuals’ medical decisions and trusted that patients with an illness could make an informed decision about their treatment.
The website removed pages in case of fraud, privacy or other breaches of its standards, the spokesperson said.
“However, we do not restrict fundraising based on the type of medical treatment being sought, as this would require us to act as a regulatory body for healthcare decisions, which is beyond our role as a platform.”
Vascular surgeon Dr Wilhelm Sandmann and Ashburton teenager Taylor Doyle, around two weeks after her operation in Dusseldorf for vascular compression syndromes.
Families who have created Facebook pages and online communities say the burden of diagnosis and advice about treatment has fallen on families and social media because of the gaps in the health system.
“Telling us there are already options that can be accessed in our public health system here is just utter lies,” said Zalie Doyle, whose daughter Taylor travelled to Germany for surgery three years ago.
“I have seen tonnes of rejection letters, spoken to many people in tears full of fear and frustrations at the lack of acknowledgement this system gives to EDS and [compression syndromes].”
Taylor had struggled with stomach problems for most of her life and was hospitalised in 2021 because of symptoms which included severe pain and problems with eating and drinking.
Zalie said that after the surgery she still managed symptoms every day but they no longer limited her ability to live a normal life.
She was reluctant to comment on the legal action against Sandmann but noted that all surgeries carried some risk. Her main concern now was advocating for Taylor and others with similar conditions.
“They have no other choice but to seek medical care elsewhere … for many the alternative is to sit here doing nothing as they deteriorate further.”
Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics and social issues.
Sign up to The Daily H, a free newsletter curated by our editors and delivered straight to your inbox every weekday.
