A former nurse with a little understood condition was told she was faking her symptoms to get attention.
The diagnosis followed an allegedly incomplete assessment by a psychiatrist who interviewed her alone, while she claims she was seriously ill and drowsy from medication.
Nichola Smith, who suffers from Ehlers-Danlos syndrome, complained to the Health and Disability Commissioner in March last year that the doctor, who the Herald has agreed to call Doctor A, violated her patient rights in the way he conducted the assessment during an admission to the National Intestinal Failure Service [NIFS] at Auckland Hospital for gastroparesis.
But Auckland District Health Board and Doctor A defended the assessment and said Smith was competent enough to consent to the interview and participate in it.
Smith, now 38, also complained about her treatment by other staff at the unit where she self-discharged after 13 days in October 2016, despite the gastroparesis rendering her unable to eat or drink without vomiting.
A nurse with 12 years' experience at Taranaki Base and Waikato hospitals, Smith made the 15-page complaint, largely to get a diagnosis of factitious disorder removed from her medical file.
Smith says while she expects doctors to question as part of their assessment whether she is making up illnesses, she thought a diagnosis of an underlying condition of Ehlers-Danlos syndrome [EDS] would dispel concerns.
Nichola Smith and her mother, Lee Smith, at home in Inglewood, Taranaki. All her life Nichola has had Ehlers-Danlos syndrome, a term given to genetic connective tissue disorders, but received the correct diagnosis only last year. Photo / Alan Gibson
Instead she believes the factitious disorder diagnosis has followed her to the point she cannot access much of the care she needs publicly or privately.
"It's just so crazy and so insidious and you would never believe that this would happen in the New Zealand health system."
Smith's formal diagnosis of musculocontractural EDS, diagnosed by rheumatologist and EDS specialist Dr Fraser Burling, as well as a geneticist in New Zealand, and confirmed by a geneticist overseas, was not made until six months after she was at the NIFS.
However, she was born with arthrogryposis - contracted joints that required multiple surgeries just so she could walk and use her hands.
For years she also suffered from gynaecological, stomach, and bleeding issues, and began to wonder if there was another cause.
"I kept asking people, 'This has got to be something else, this isn't normal'," Smith said.
She also suffers from Complex Regional Pain Syndrome after a particularly difficult surgery in 1998 to address contracted joints in her leg.
When in 2015 Smith developed gastroparesis, paralysis of the stomach so that it cannot empty itself, she lost a staggering 25 kilograms taking her to 49kg.
She was referred to the intestinal failure unit for investigation for total parenteral nutrition (TPN), a liquid food that bypasses the stomach through a Hickman line inserted into the chest.
At Auckland Hospital the continuous vomiting caused dehydration which led to lithium toxicity in Smith, who had been taking the medication for bipolar disorder since she was 20.
The high lithium levels, which Smith proved was the fault of doctors and says were ignored for a week, left her confused, drowsy, with twitching muscles, blurred vision and slurred speech.
She also suffered panic attacks and anxiety, and mood-altering thyrotoxicosis that led to outbursts she later apologised for.
The toxicity and dehydration also meant clonazepam, medication she was given to reduce anxiety, took longer to clear her system and caused further side effects.
"I was going insane and no-one picked up on this for a week."
It was in this condition that Smith claims Doctor A woke her to conduct his assessment and denied a request that her mother be present.
Nichola Smith refutes a diagnosis of factitious disorder, but can't get it removed from her medical notes despite having Ehlers Danlos syndrome. Photo / Alan Gibson
Smith complained to the HDC that she was in no position to consent to the assessment, let alone understand it.
"How can I consent to an interview when I'm high on clonazepam and my lithium levels are all crazy? I didn't know what I was consenting to."
She complained that the assessment took place in violation of her right to support, give informed consent and be fully informed, that the assessment was incomplete and Doctor A's report contained significant inaccuracies.
In his response Doctor A told the HDC Smith was offered a nurse chaperone but declined it and that he sought permission from Smith and her mother for part of the assessment to be conducted alone.
Smith and her mother deny both statements and Smith said under the Code of Health and Disability Services Consumers' Rights she had the right to a support person of her choice, not a chaperone that she did not know.
She cut the interview short after 15 minutes saying she felt "increasingly uncomfortable with the questions that were being asked".
She felt Doctor A began the interview by "firing accusations" that suggested she had anorexia.
Smith admitted struggling with anorexia for a short period in her early 20s, at the same time she was symptomatic with borderline personality disorder, a condition Doctor A attached to his factitious diagnosis but which her GP says she does not have.
By his own assessment Doctor A admitted: "When I went to interview her, she initially said she was too fatigued."
He said she could not engage in full sentences or have a coherent discussion of her situation, and that her cognition was mildly impaired "in the setting of being slowed due to pain medications".
Smith turned Doctor A away when he tried again the next day.
Her mother, Lee Smith, said it appeared Doctor A was trying to fit her daughter's situation into a pre-determined idea.
She was in the room when he woke Smith for the assessment and described her daughter as being so drowsy with medication that she could not hold a simple conversation, was uncoordinated, fell asleep mid-sentence and continually locked herself out of her phone.
In response to Smith's complaint, Doctor A described an emotional, confrontational patient.
"She has presented with signs and symptoms that are inconsistent with clinical findings and medically unexplained and there is a strong pattern in her actions and words consistent with abnormal illness behaviour whereby she is manifesting physical symptoms as manifestations of her emotional distress."
In his assessment he noted she was "unhappy with my bedside manner", questioned Smith's need for a wheelchair, said she was poorly groomed, had poor insight and was of average intelligence.
"In light of her previous difficulties with the mental health services and the lack of an indication for her gastroparesis or for her difficulty with ambulation [walking], the differential diagnosis needs to include factitious disorder."
An X-ray shows the curve in Nichola Smith's spine. A psychiatrist who questioned her need for a wheelchair also said she had factitious disorder. Photo / Supplied
However Smith, who has a master's degree in nursing, said severe kyphoscoliosis (deformity of the spine) and osteoarthritis meant she often needed a wheelchair.
"My spine crushes all my internal organs and is painful."
She queried what symptoms were inconsistent with clinical findings, and wanted Doctor A's assessment removed from her file.
Auckland DHB psychiatric liaison service acting clinical director Dr Yvonne Fullerton told the HDC further lengthy explanations by Doctor A would not help Smith.
"I believe it is unhelpful to continue addressing Ms Smith's version of events as her very responses are consistent with the conclusions Dr Doctor A and others reached."
Smith said she had every right to complain without being told the reason for her complaint was factitious disorder.
In her decision released in March this year, deputy health and disability commissioner Meenal Duggal accepted that Doctor A had "provided a vastly different version of events" to Smith.
She said it appeared Smith was offered a chaperone for the assessment and declined and that it was ADHB policy to continue with the interview in this situation.
"I intend to remind (Doctor A) that if the patient appears distressed or uncomfortable, then it would be appropriate to reschedule the interview, or negotiate ways in which the interview could be more comfortable for the patient," Duggal said.
"Further to this I trust that (Doctor A) and Auckland DHB have reflected on your personal experience and will use it to guide future practice."
Duggal acknowledged Smith was unhappy with Doctor A's response but said further assessment by the office would not resolve the issue and she would take no further action.
Duggal also found no reason for the HDC to intervene in an earlier complaint against Doctor A's factitious diagnosis of an EDS sufferer Steph Aston. Lee Smith, also a nurse, told the Herald she believed factitious disorder was a misdiagnosis that had led to unfair care for her daughter.
"These are genuine health issues that she has, and because of that diagnosis now everyone in the medical profession seems to have just stepped back from wanting to have anything to do with her care.
"She has not been treated as we expect to be treated by the health professionals in our country."
Nichola Smith at home in Inglewood, Taranaki. Photo / Alan Gibson
Lee Smith wants an apology for her daughter, for the assessment to be scrubbed from her file and for the situation to be investigated again.
"We've felt completely dismissed. There's a real injustice."
Auckland DHB said it could not comment on individual patient treatments for ethical and privacy reasons.
Smith left the intestinal failure unit two years ago without TPN and said back in Taranaki she no longer has access to specialist gastrointestinal or pain management care.
"I've got a tube but I do eat and drink what I can and I'm grateful for that."
Since publication, Auckland District Health Board has responded to the Herald's series about EDS and factitious disorder published this week. An Auckland DHB spokeswoman said the stories seemed to have singled out Doctor A, which was not a fair representation of the diagnostic process.
"Although we can't comment on the specifics of individual cases, these sorts of diagnoses are not determined by an individual clinician in isolation but form part of a diagnostic process and comprehensive medical assessment that includes input from a number of specialist clinicians."
Ehlers-Danlos syndrome [EDS] Ehlers–Danlos syndromes are a group of genetic connective tissue disorders where abnormal collagen causes joints and connective tissue to become loose. Symptoms include hypermobility, stretchy skin, dislocations, and some patients can bleed easily. EDS is more common than autism but is often misdiagnosed because of lack of awareness.
Factitious disorder Previously called Munchausen syndrome, factitious disorder is a mental disorder where a person makes up a physical or mental illness to get sympathy and special attention.
Borderline personality disorder A pattern of having very unstable relationships, having difficulty controlling emotions and thoughts, and behaving recklessly or impulsively.
Differential diagnosis In medicine, a differential diagnosis is the distinguishing of a particular disease or condition from others that present similar clinical features.
Lithium Mood-stabilising medication used to treat bipolar disorder and major depressive disorder. An overdose can cause mild side effects such as fatigue, tremours and drowsiness to severe effects including agitation, slurred speech, kidney failure, delirium, coma and death.
Thyrotoxicosis An excess of thyroid hormone causing tremors, nervousness, agitation, anxiety, fatigue and weakness.
