First Do No Harm
Disabled and chronically ill patients are paying the price when seeking medical care in New Zealand’s health system that is ill-equipped to address their complex needs. This can lead to their quality of life being eroded and experts are concerned about unnecessary death occurring.
Warning: this story contains mentions of medical trauma, self-harm, suicide, death, and surgical photographs.
It should have never been this hard. In a sonography clinic thousands of miles from home, a teenage girl lies on an examination table. Her shirt is pulled up over her ribcage, skin still sticky with transducer gel, after having an ultrasound probe gently manipulated across her torso. The girl, Taylor Doyle, lies there pensive as she quietly reconciles with the gravity of what the doctor has told her. A mixture of grief, validation, and resignation swirls through her mind. Meanwhile her mother howls, overwhelmed with the devastating trauma that has accompanied the journey to this hard-won diagnosis.
One in four New Zealanders live with a disability or long-lasting health condition - chronic illness. However, these people are often forced to seek care in the public health system that struggles to manage persistent, rare, or intractable illnesses. Consequently, these patients often experience varying degrees of symptom dismissal, gaslighting, misdiagnosis, mismanagement, and medical trauma or harm. It has also prompted various health professionals, organisations, and researchers to try and bridge the gap, focusing on providing healthcare tailored to those with chronic conditions.
Irrevocable: the toll of medical harm
Taylor Doyle has always lived with gastrointestinal symptoms since she was a young child. By the time that she was eight years old, her chronic gastric reflux and heartburn had become unmanageable and her GP referred her to paediatrics under gastroenterology for further treatment. Eventually, Taylor underwent a corrective surgical procedure in 2020 called Nissen fundoplication at 12 years old.
The relief from this surgery was short-lived. Only a few months later, she became acutely unwell with intense abdominal pain which started to “significantly” interfere with her quality of life. Taylor had begun to avoid eating during the day to avoid stomach pain and heartburn while at school. Six months after surgery, Taylor was hospitalised.
Neither Taylor, nor her parents Zalie and Karl, could have foreseen the trauma that would result from this.
Although Taylor had a diagnosis of gastroparesis by that stage, doctors referred her to the psychiatric team within days of her admission. She was given a working diagnosis of hypersensitive nerves and chronic pain, which was never adjusted to consider other causes for her symptoms.
During a six month period, they went through “hell” as Zalie was told that she was “pushing for non-indicated procedures” whilst she desperately requested that Taylor be placed on nutritional supplementation to mitigate her symptoms and treat her malnourishment.
“I just so genuinely wanted to do what I could to help my child and I didn’t think that it could be viewed any other way,” said Zalie.
Over the next five months, Taylor spent over 100 nights in hospital. During this time, she endured 11 general anaesthetics, countless blood tests and IVs, as well as traumatic procedures to insert NG or NJ tubes. When her tubes failed or her body rejected them, Taylor was accused by doctors of deliberately tampering with them to create more problems.
Following many hours of research, Zalie suspected that her daughter was suffering from Median Arcuate Ligament Syndrome (MALS). However, it was a potential diagnosis that was repeatedly disregarded by the gastroenterologist and other clinicians.
By now, the Doyles were rapidly losing hope and made the decision to self-fund medical travel for a specialist consultation in Sydney. She was promptly diagnosed with MALS and received surgical treatment to relieve the compression.
The family was dealt another unfortunate blow as Taylor never fully recovered from that surgery and her health quickly plummeted. This was due to a number of other undiagnosed abdominal vascular compressions which the Doyles’ weren’t aware of at the time.
In the wake of this downturn in Taylor’s health, the family made a shock discovery that an alert had been placed on Taylor’s medical file. The alert prevented any further investigation, treatment, or emergency intervention through the public health system.
Taylor further deteriorated and the family made the difficult call to travel to Germany to consult with a vascular compression specialist for further investigation. “I was desperate, the thought of doing nothing wasn’t an option,” said Zalie.
In a clinic thousands of miles from home, both Taylor and Zalie finally received compassion and validation they felt they had never experienced in New Zealand. Taylor was subsequently diagnosed with multiple Abdominal Vascular Compression Syndromes, Nephroptosis, and Hepatoptosis, all of which were corrected during extensive abdominopelvic surgery. She was also found to have hypermobile Ehlers Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Following Taylor’s surgery, her quality of life has improved dramatically. She engages in school, recreational activities, and community work like a relatively normal teenager.
However, Zalie is angry and disappointed that her family had to suffer through profound levels of trauma in order to save Taylor’s life. "At a time when we were so vulnerable and our daughter's health was deteriorating in front of our eyes, they [the public health system] did nothing helpful whatsoever."
She is also concerned about how her daughter and other chronically ill patients will manage in our current healthcare system. "I think that it is going to take someone dying unnecessarily and whose life is worth that?"
Zalie is saddened that she has lost confidence in our public health system as a result of what Taylor and her family experienced in the fight to get her condition treated. “We should be able to trust our health system, we should be able to rely on them to provide us the best care.”
During the work on this feature, other people's stories of experiencing medical harm and problematic treatment in the healthcare system were discovered. You can view their stories in the video below. Their names have been changed to protect their identities.
Please note the content warnings on the title slide before watching.
Answers from the health sector
Duncan Bliss from Te Whatu Ora Health New Zealand said that we have a relatively small population and hence, it has small volumes of patients with rare conditions and related treatments. The director of surgical services at Te Toka Tumai (Auckland region) notes that the High Cost Treatment Pool was established in recognition that Aotearoa does not have the capacity to provide all of the same treatment, technology, and expertise that is available in other countries.
“It can be challenging to balance local access to specialists and centres of excellence for medical care.”
Auckland City Hospital is the largest public hospital in New Zealand. It is also a clinical research facility. Photo: Melissa Irving.
Auckland City Hospital is the largest public hospital in New Zealand. It is also a clinical research facility. Photo: Melissa Irving.
He said it is evident that better patient outcomes are achieved through centralisation and higher patient volumes. This means that although they could have clinicians who are trained in a specialised surgical treatment, if they do not perform it regularly they will be unable to maintain their skills and expertise.
With regard to vascular compressions, our health system already supports people and their families. Every Te Whatu Ora district has access to regional vascular specialists and many patients with vascular compressions respond well to treatment without the need for further intervention. Vascular compression syndromes are a rare group of conditions that vary in their severity and complexity.
However, we acknowledge that some patients with these conditions may choose to go overseas for treatment, rather than accessing what is available in New Zealand. For these cases, specialists can apply to the High Cost Treatment Pool in support of treatment options that provide the most appropriate care, said Bliss.
When it comes to treating disabled or chronically ill patients, general practice frequently works in tandem with the specialised or hospital care sectors.
Doctor Luke Bradford said that GPs are specialists in providing care throughout a person's entire life and have the ability to treat a broad range of ailments. The medical director at the Royal New Zealand College of GPs (RNZCGP) explained that they regularly manage disabilities and chronic conditions. This is achieved through 11-14 years of training to become a specialist GP and by building strong relationships with their patients.
Alongside the services provided by specialists and hospitals, GPs are often involved in the care of disabled and chronically ill patients. Photo: Melissa Irving.
Alongside the services provided by specialists and hospitals, GPs are often involved in the care of disabled and chronically ill patients. Photo: Melissa Irving.
Within the RNZCGP education curriculum, there is a section which covers dealing with chronic illnesses. Practice teams are also aware of other agencies that are able to provide care for patients who live with chronic health conditions in the community. However, Dr. Bradford recognises that some difficulties still remain in general practice.
“Often with diseases which do not have evidence based diagnostic criteria or treatment criteria we share our patients’ frustrations at the perception of a system that is not designed to help them.”
Dr. Bradford said that part of a GPs role is to give guidance, advocate, and rule out other pathologies which might be causing a person’s condition. A key aspect of their work with patients involves empowering them to manage their disability and lessen the impact of their symptoms.
Watch the following video below to find out some information about Hato Hone St John Ambulance officer training and protocol for dealing with patients. Accessibility warning: video does contain blue flashing lights.
Reviving An Ailing Health Sector
On a blustery September day, Chris Higgins darts from one meeting to the next. The chief executive of Rare Disorders New Zealand is assiduous and steadfast, working alongside his team to identify problems in healthcare and advocate for the necessary improvements.
Chris Higgins, chief executive of Rare Disorders NZ, says that not having a centre of expertise for rare conditons is a "major shortcoming" in public healthcare. Photo: Melissa Irving.
Chris Higgins, chief executive of Rare Disorders NZ, says that not having a centre of expertise for rare conditons is a "major shortcoming" in public healthcare. Photo: Melissa Irving.
Though he is dedicated, Higgins is also weary and frustrated at the significant number of challenges and inaccessibility that disabled or chronically ill patients face.
“There is a lot of morbidity and mortality that doesn’t need to happen in healthcare,” said Higgins, “It makes me pretty angry because it doesn’t need to be that way. I’m also disappointed, because the health legislation reforms don’t go far enough to address these inequities.”
He says that one of the largest gaps we have exists in primary healthcare. Patients going to their general practitioner (GP) with a set of co-presenting symptoms can often result in the doctor disbelieving the patient and imply that it is “all in their head.” But it can also lead to potential misdiagnosis and the patient therefore receiving ineffective or harmful treatments.
Listen to the audio clip below, which takes a deeper look into a phenomenon known as medical gaslighting.
Higgins advised that it is unrealistic to expect GPs to recognise signs that a patient has a rare disorder. This is due to two main factors - the substantial number of rare conditions which exist, and that they can be encountered much less frequently.
However, general practice visits remain a crucial part of an individual’s health journey. Therefore, it is critical that this issue is addressed. To help combat this, Rare Disorders New Zealand is advocating for the development of a Centre of Expertise for rare and undiagnosed conditions. This would serve as a virtual repository of research and evidence-based standards that GPs or other clinicians can utilise to make further decisions regarding patient care.
“Not having that, for people with rare disorders, is a major shortcoming in the current health system.”
The organisation is hoping to align this initiative with the implementation of the National Rare Disorders strategy (Fair for Rare NZ) and a review of the country’s primary healthcare service.
Listen to the following clip for an explainer about the term diagnostic odyssey.
Another critical issue that Higgins emphasised is how we have serious precarity around retention of specialist clinicians and the potential loss of their expertise when they leave the workforce. This is due to having no existing mandate to recruit practitioners with similar rare disorder knowledge to replace the previous clinician.
“We need to nurture and grow the rare disorders expertise that we have in New Zealand, rather than leaving things to chance and letting the resources that we do have slip away from us,” said Higgins.
These concerns are echoed by rural-based physiotherapist *Gillian. She is a clinical advisory member for Ehlers Danlos Society NZ, with a special interest in treating patients with hypermobility and connective tissue disorders.
She spoke about how having less specialist clinicians that understand conditions like EDS mean that the system is stretched very thin. Consequently, this can exacerbate wait times and prevent practitioners from offering regular treatment, which is troubling for both clinicians and patients.
“It is very frustrating for patients, they feel very isolated and lost in this journey.”
It can be very lonely for chronically ill and disabled patients to self-manage their conditions if the health system is unable to cope with demand. Photo: Melissa Irving.
It can be very lonely for chronically ill and disabled patients to self-manage their conditions if the health system is unable to cope with demand. Photo: Melissa Irving.
Gillian would also love to train somebody to hand over her practice in preparation for retirement. However, she feels like this is prevented by the lack of a suitable provider who can accept her patient workload.
“In an ideal world, it would be fantastic if Te Whatu Ora could recruit and train more EDS clinicians in the public health system,” said Gillian.
One aspect that Gillian feels is beneficial towards addressing the problem has been the wider implementation of telehealth services. Not only does this grant patients the ability to consult with clinicians throughout New Zealand or international experts, it has also created easier training opportunities.
In 2019, the EDS ECHO Program was launched as a comprehensive series of virtual courses and seminars regarding EDS, hypermobility spectrum disorders (HSD) and associated conditions. Described as an evolution in medical education, the program is open to healthcare professionals worldwide and offers flexible learning, collaboration and mentorship. Practitioners also have the potential to earn education credits. The organisers endeavour to keep participation fees free or as low as possible to allow for greater access.
“Our training for EDS is growing exponentially, so I feel that we’re on the cusp for great improvement,” said Gillian.
However, she is also distressed about the number of patients who experience financial hardship, which can have significant impacts on their ability to access treatment in the private sector and further affect their quality of life.
“I do seriously worry about people who have chronic illnesses of all sorts and their ability to manage. For chronically ill people who can’t work, they really have a great problem with poverty.”
According to Prudence Walker, the Disability Rights commissioner, disabled and chronically ill people are “overwhelmingly overrepresented” in poverty and material hardship figures.
The Stats NZ report Measuring inequality for disabled New Zealanders 2018 found that less than half of disabled people (47.7 percent) reported having enough or more than enough money to meet their everyday needs - while often facing costs not incurred by non-disabled people.
Walker said that the cost of GP or specialist appointments, non-subsidised medications, medicinal cannabis prescriptions, supplements, counselling, and transport can be significant financial barriers. Despite patients having the ability to partially cover these costs through the Disability Allowance, the maximum amount granted ($75.10) is still very low. This also places a high administrative burden on individuals because there is uncertainty about what will be accepted as a disability cost.
Prudence Walker also noted these issues when she was asked about barriers that disabled or chronically ill patients encounter when they are trying to access medical care. Infographic: Melissa Irving.
Prudence Walker also noted these issues when she was asked about barriers that disabled or chronically ill patients encounter when they are trying to access medical care. Infographic: Melissa Irving.
The Commissioner also highlighted that while we are making good progress through the development of disability health strategies in Pae Ora and ACC legislation, we need to see successful implementation of these changes to achieve better outcomes for the community.
“The health and disability workforce needs to understand and respond to the varied needs of chronically ill and disabled people to be able to reduce health inequities,” said Walker.
In the future, she would like to see increased training and support provided to clinicians across the health, disability, and ACC sectors that improves their understanding of long-term illnesses or conditions. Walker recommended that medical professionals be taught more about invisible illnesses, communication barriers and differences, trauma-informed care, and problematic attitudes around disability or complex illness.
She said that it is also vital to deliver this education through a disability-affirming and intersectional lens, which recognises the need to change negative attitudes, uphold human rights, and have better engagement with tāngata whaikaha Māori.
Although Taylor has shown great improvement with her health following her surgery to relieve the abdominal vascular compressions, the Doyle family is still struggling in the aftermath. Hypermobile Ehlers Danlos Syndrome and its associated comorbid conditions are incurable, which means that she will have to manage them for her entire life.
Both Zalie and Karl are still suffering emotionally, yet they feel no confidence in the public health system, nor its complaints and accountability process.
"There's actually going to be no justice for us and I don't think that's fair. I don't even think there will be an apology," said Karl.
Zalie feels insulted at their mistreatment, considering that they embarked on medical travel to the world's most experienced vascular compression surgeon. She added that Taylor transformed from living in a hospital bed to thriving and living her life like a fairly normal teenager. Which is proof that her and Karl made the right decision to pursue this surgery.
Despite the trauma they have experienced, Zalie is determined to continue raising awareness of abdominal vascular compression syndromes. She advocates for future hope that one day, people can get treatment for these conditions in New Zealand with no need for medical travel or other barriers.
"I feel grateful and lucky, I am the lucky one. My child has had treatment and she is thriving. I am just the lucky one and not everyone is in the same position as us."
If you have been affected by any of the themes in this story, please reach out to:
Need to Talk? Free call or text 1737 any time to speak to a trained counsellor, for any reason.
Lifeline: 0800 543 354 or text HELP to 4357.
Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO (24/7). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.
If this is an emergency and you or someone else is in danger, please call 111.
First Do No Harm credits
Written by: Melissa Irving, disability and social issues journalist.
Photos, videos, audio clips, and infographics: Melissa Irving.
Assorted photos of the Doyle family: Supplied.
Photo of hospital ward with beds: Pexels stock image.
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