Rachel Palmer talks about her struggles with Ehlers-Danlos Syndrome.
Dr Rachel Palmer's life is in ruins.
The 47-year-old Christchurch criminologist turned style consultant who has a PhD in criminology, master's degree in applied criminal justice and a double degree in psychology and education, is largely bedridden with a permanent catheter, faecally incontinent and suffers from excruciating pain.
Palmer was diagnosed with hypermobility and then classical Ehlers-Danlos Syndrome (EDS) at 38, after years of stress fractures, spinal problems, partial and full dislocations, and stomach problems.
"I was going to the gym, I was working different jobs, I had a business. I was really out there participating in society and then when I hit 40, things went severely downhill from there."
Palmer suffered a serious fall at a friend's house in 2014 following a hip replacement, that left her with a hip that partially dislocates up to four times a day.
When Palmer lost 17kg over eight months in 2013 and 2014, doctors suspected an eating disorder.
"I was eating as much as my husband but I couldn't keep the weight on," the mother-of-two said.
Palmer discovered in medical notes to her GP that hospital doctors wanted to section her under the Mental Health [Compulsory Treatment and Assessment] Act to enforce treatment for anorexia.
Frustrated with the lack of investigation into the cause of her weight loss and desperate for treatment, she sought out palliative care before fleeing to Australia.
There a simple stool test revealed Palmer, by then weighing just 37kg and close to organ failure, had pancreatic dysfunction because she lacked an enzyme that enabled the body to absorb fat.
"Having to leave your own country to seek healthcare in another country you have no medical cover in is ridiculous, unjust and scary. Not to mention the expense.
"But I knew if I waited and was sectioned I was a goner because all my private specialist investigations [into the weight loss] had been shut down."
In Australia an enzyme treatment helped her gain weight again and Palmer returned to Auckland where she continued to be treated for fat malabsorption, proven in one study to be associated with EDS.
During an admission to Auckland Hospital in early 2015 Palmer was visited by a doctor, who the Herald has agreed to call Doctor A.
"They said to me 'We've got this specialist in your condition we want you to see'. I thought 'Oh great, an Ehlers-Danlos specialist'. I had no idea he was a psychiatrist."
Palmer was wheeled in her hospital bed to a private room where she says Doctor A asked her support person to leave.
"I didn't know going into that assessment what it was. They didn't tell me it was a psychiatric assessment. If I'd known, I wouldn't have gone."
But Doctor A later wrote that he clearly introduced himself and stated his role at that first meeting with Palmer.
Ten minutes into the session Palmer claims she realised she was being psychiatrically evaluated.
Rachel Palmer before her graduation with a PhD in criminology. Photo / Supplied
A day later Doctor A requested Palmer sign consent for the release of her medical records, but she refused, believing her history at Wellington Hospital would cast doubt on her EDS diagnosis.
Palmer was so distressed she rang Ehlers-Danlos Advocacy Organisation lead co-ordinator Tracey Jourdain, and complained to Auckland DHB's consumer liaison service.
In the email dated February 15, 2015, Palmer said she believed her rights were breached in the initial assessment and that she was "pressured, not listened to or communicated with" and discriminated against.
"I feel this consultation has now compromised my receiving appropriate care to address the condition for which I presented."
She then met with Doctor A together with her husband Brent Palmer and a hospital liaison, to air her concerns.
In a recording of the meeting, listened to by the Herald, Doctor A tells Palmer he believes she would benefit from dialectical behavioural therapy [DBT].
The psychotherapy is designed to help people suffering from borderline personality disorder which Doctor A said he would not diagnose in Palmer after such a short interaction.
However he said she had an "emotional genius" that presented in different ways and which she had some aspects of in the classic form, "which is borderline personality disorder".
He also told her doctors believed she did not have postural orthostatic tachycardia syndrome [POTS] which has been linked to EDS, despite it being diagnosed by three separate doctors, and that the colorectal surgeon did not think there was a need to intervene.
Palmer's discharge summary said she had a secondary diagnosis of cluster B personality traits, disorders that are characterised by dramatic, overly emotional or unpredictable thinking or behaviour.
At the time Palmer had 29 diagnosed medical conditions and symptoms of serious gastrointestinal problems but Doctor A told her there wasn't a significant role for specialist care for her at the hospital.
He said "central issues" and related stress were the likely causes of her previous stomach problems.
Jourdain believes the assessment led to a breakdown in Palmer's care privately and a delay in surgery for bowel reconstruction, after which serious damage to Palmer's bowel and bladder left her faecally incontinent and needing a permanent catheter.
"It is hard enough to be taken seriously as an EDS sufferer and receive correct medical management without this type of interference, but after this kind of interference, life is virtually impossible for these patients," Jourdain said.
Palmer now suffers from a serious nerve issue stemming from the catheter, which she describes as the worst pain she has ever experienced.
When Palmer took her case for continuing cover to the ACC external medical panel, where Doctor A is the Royal Australasian College of Physicians expert representative, they referenced her psychiatric history.
Palmer felt overwhelmed and withdrew from the process. ACC ended home help and childcare for her daughter, then 8, a week before Christmas 2015.
Dr Rachel Palmer and husband Brent Palmer at Brighton beach in Christchurch before her condition worsened. Photo / Supplied
Eventually Palmer returned to Christchurch but said her care had not improved.
Doctors insisted she wean off opioids previously prescribed for pain before she could be assessed which she did by herself. Now she is without adequate pain relief with no alternative.
She's too traumatised to go to a pain clinic after she says a Wellington pain doctor treated her like a "circus freak" because of her joint hypermobility.
Palmer has difficulty accessing hydrotherapy [water rehabilitation] because her body is so deconditioned from physical inactivity after funding for the rehab was suspended for two and a half years.
She also finds it hard to visit New Zealand's leading expert in EDS, rheumatolgoist Dr Fraser Burling, in Auckland.
Burling offers prolotherapy [proliferation therapy], an injection-based treatment used in chronic musculoskeletal conditions that can improve symptoms for EDS patients.
Last year a petition launched by an advocate for Palmer on Change.org prompted by the lack of access to hydrotherapy attracted more than 22,000 supporters, and asked then Prime Minister Bill English to address funding inequities for people disabled by EDS.
"My 11-year-old daughter and teenage son are being robbed of their childhood and adolescence because I can't be the mum I want to be and enjoy activities with my family."
Largely confined to her bedroom, Palmer says her future is grim.
"It's so unreasonable and so unfair. I just don't know what to do. I can't get enough care here. I just can't win. No one listens and no one understands it."
Auckland DHB said it could not comment on individual patient treatments for ethical and privacy reasons.
Commenting on 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."
International EDS speaker Dr Heidi Collins, a rehabilitation specialist from Indiana in the United States, said without acknowledging and addressing the primary issue, the person diagnosed as "crazy" does not improve.
"For persons with EDS - their emotional state does not improve, nor does their musculoskeletal, gastrointestinal, autonomic or immune state, if they are treated solely for psychiatric/psychological diagnoses.
"When you have this primary condition like EDS, sure you can have depression or anxiety secondary to it.
"But what you're getting is clinicians saying your primary problem is a psychiatric one and that is where it's just so critically wrong."
Glossary
Cluster B personality disorders Cluster B personality disorders are characterised by dramatic, overly emotional or unpredictable thinking or behaviour and interactions with others. They include antisocial personality disorder, borderline personality disorder, histrionic personality disorder and narcissistic personality disorder.
Borderline personality disorder A pattern of having very unstable relationships, having difficulty controlling emotions and thoughts, and behaving recklessly or impulsively.
Antisocial personality disorder A pervasive disregard for the law and the rights of others.
Histrionic personality disorder Attention-seeking behaviour including inappropriately seductive behavior and shallow or exaggerated emotions.
Narcissistic personality disorder A pattern of grandiosity, need for admiration and a lack of empathy.
Fat malabsorption Malabsorption syndrome refers to a number of disorders where the small intestine can't absorb enough of certain nutrients and fluids. One study shows a link between malabsorption and EDS.
Sectioned When the Mental Health (Compulsory Assessment and Treatment) Act is used to give compulsory treatment to a patient including keeping them in hospital.
