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“Move to Brisbane, forget you ever had a daughter”

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South Australian carers live in fear that their loved one will be the next to die.

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“Move to Brisbane, forget you ever had a daughter,” the psychiatrist said.

Melinda had just been diagnosed with borderline personality disorder (BPD) and caring for her, reasoned this experienced Adelaide mental health professional, would be simply too hard.

Parents Bob and Judy Burke were told their best option may be to simply abandon their daughter, and leave the state.

The pair dismissed the psychiatrist on the spot.

In 2002, when the disturbing advice was received and rejected, Melinda was aged 33, and the Burkes had long become accustomed to receiving ‘inappropriate’ advice on how to care for her.

Alone on an island, sinking…

The parents’ first understanding of Melinda’s mental illnesses came when she was just eight years old.

The little girl, who had been diagnosed with a mild intellectual disorder, told her mother that she felt “alone on an island, sinking”.

Just before her sixteenth birthday, Melinda survived a first suicide attempt. She was hospitalised for a week.

By the age of 27, she was in and out of hospital, having self-harmed on an almost fortnightly basis.

On one terrifying occasion, Bob and Judy had to physically save Melinda from taking her life.

“It was hell,” says Judy.

“It was absolute hell.

“She was forever saying: ‘I’m a bad person; I’m dreadful; I don’t know why you love me’.

“I certainly had prepared for her funeral.”

The parents also felt “guilt, and anger”, says Bob, “because, all along, we were told – yes – she has mental illness, but basically she was badly behaved”.

Thoughout the ordeal, psychiatrist after psychiatrist told the couple Melinda’s central problem was “bad behaviour”.

There was a threat by one psychiatrist – carried out – to cut off treatment if Melinda failed to hold a job.

In another case, there was a blatant suggestion that parental abuse had caused Melinda’s illnesses.

Melinda Burke. Photo supplied.

Melinda Burke. Photo supplied.

Bob and Judy were also urged to force their daughter out of home, as a means of reducing her dependency on them.

Melinda’s illness was, and is, characterised by an extreme fear of abandonment above all things, and the move was deeply damaging – both to family bonds and to Melinda’s mental health.

She was diagnosed with bipolar affective disorder, among other mental illnesses.

But it was not until the age of 33 that Melinda received a diagnosis of borderline personality disorder (BPD).

Bob and Judy were given a single A4 sheet of information on BPD, photocopied from a journal article, which they found about as helpful as the advice to leave the state.

While they are keen to point out that some medical professionals dealt with them with great competence and sympathy, they feel profoundly let down by many of the health professionals they have dealt with over the decades.

And they are not alone.

It’s not the general public that discriminates most harmfully towards BPD sufferers: the stigma is perpetrated by health professionals.

In 2012, the pair founded Sanctuary, a support group for carers of people with BPD.

Members of the group have endured the loss of four young women to suicide over the past two years in South Australia.

Many of the more than 100 Sanctuary members live in terror that their loved one might follow the same path.

“They are absolutely distressed and bewildered,” says Judy.

“Because they’ve got no idea why it [BPD] has happened. They do love their daughters and they don’t know what to do to make it better.”

Several carers in the group have told InDaily that active discrimination against their loved ones by some medical and mental health professionals has plagued repeated attempts to get appropriate treatment.

Help for SA sufferers ‘uncoordinated’, ‘random’

Adelaide psychiatrist Dr Martha Kent told InDaily inappropriate medical and mental health care for BPD sufferers stemmed from a belief – outdated since the 1990s – that the disorder was untreatable, and that sufferers were fundamentally “bad” in character.

“For a long time in the public health system, if someone was labelled with BPD, they were seen as untreatable and unlikable,” said Kent.

“Sufferers from this condition can be challenging, emotional, oppositional, aggressive (and) demanding, then for all of those reasons it’s developed a bad reputation in the mental health services and in psychiatry in general.”

In South Australia, the system linking sufferers (and their carers) to appropriate treatment is “piecemeal”, “uncoordinated” and “random”, said Kent.

“Unfortunately in this state there are a few patchy offerings of dialectic behavioural therapy (a cognitive psychological treatment) but there is no coordinated treatment approach for people with BPD,” she said.

“It is very much underfunded.

“(However) there’s a very cogent economic argument here, not just the humanitarian argument … in favour of doing enough.

“The frustrating thing is that we know that if (patients) were offered a coordinated, tailored system of care, such as that offered in Victoria or New South Wales, they would do a whole lot better.

“We are having a great deal of difficulty persuading the decision-makers that this is a worthy cause.”

Bob and Judy were on an SA Health committee tasked with evaluating how the system treats patients with BPD, and with recommending changes.

Their recommendations – including the establishment of a dedicated centre for excellence in BPD treatment – were handed to the government in early 2012.

At a clinical health network meeting around six months later, Judy claims, a senior SA Health clinician told those assembled that “this report will never see the light of day in this form”.

The committee rewrote the report, says Judy, minus the BPD centre for excellence, and presented it again to the government in 2013. It was finally published in June 2014.

Last month, Opposition Health spokesperson Stephen Wade, Dignity for Disability MLC Kelly Vincent and Greens MLC Tammy Franks called on the Government to create a BPD centre for excellence, and implement a holistic approach to the illness.

Later in the month, the state’s former Chief Public Health Officer Stephen Christley was appointed interim Mental Health Commissioner.

Christley said his focus in the role would be on preparing a five-year mental health plan for the state, and reducing stigma and discrimination against people who suffer mental illness.

A spokesperson for SA Health told InDaily that “a key priority of the newly established Mental Health Commission is to engage directly with South Australians living with mental illness, including those living with BPD, to determine their needs and how we can better deliver the services they require”.

“These conversations will lead the development of a five-year strategic mental health plan to improve mental health services across South Australia.”

The spokesperson said that BPD sufferers have access to a specialised BPD therapy program, and that “statewide community mental health teams also offer follow-up support and care for mental health consumers following discharge from acute (hospital) services”.

InDaily understands the waiting list for publicly funded BPD therapy can stretch for over a year.

Professor Andrew Chanen is the deputy director of research at Orygen, the national centre for excellence in youth mental health.

“It’s not the general public that discriminates most harmfully towards BPD sufferers: the stigma is perpetrated by health professionals,” he told InDaily.

“Because the disorder itself is characterised by interpersonal difficulties, as a patient group, clinicians find this group of patients challenging to deal with.

“The disorder…is highly stigmatised by the health professions, and as a result, people with BPD get not only poor care, but often care that can be harmful, because of the harmful attitudes that people harbour toward them.

“(However) stigma is really the wrong word to use … it’s really ignorance, prejudice and discrimination that we’re talking about.

“People within certain sectors of the health system, particularly within the emergency sector will encounter pejorative attitudes, like people saying to them ‘oh, you couldn’t have been serious about killing yourself, you’ll have to try next time’, or pejorative attitudes about ‘they’re not really sick’.”

Chanen said surveys of medical professionals showed they did not believe they discriminated actively against sufferers of the disorder, but that some of their colleagues did.

It is for this reason, said Chanen, that BPD is sometimes left undiagnosed by mental health professionals who mistakenly believe that opting for a different diagnosis, such as bipolar disorder or major depression, would result in better treatment for that patient by the next professional to see them.

…quite rightly, staff are wary and need to be wary, because you can get trapped by (BPD sufferers).

Paquita Spurr’s daughter was 14 years old when she was admitted to hospital, three years ago, having survived a suicide attempt.

Staff at the Women’s and Children’s Hospital, said Spurr, were reluctant to admit her daughter, but did so after the mother broke down in the waiting room.

Spurr was devastated to find a document last month, not given by the hospital, showing that doctors had noted “borderline traits” during her daughter’s hospital stay, and failed to inform her.

This failure, she said, prevented her daughter getting the help she needed.

“She was desperate to have a diagnosis, and desperate to find out what was wrong with her, and desperate to get better,” Spurr told InDaily.

“All I knew was the anxiety and depression, and later the psychosis, and the OCD…which were underneath the actual problem, being borderline traits, and none of that was shared with us.”

However, senior emergency doctor and president of the doctors’ union, SASMOA, David Pope rejected the notion that BPD sufferers were regularly discriminated against in emergency departments.

He said hospital staff, particularly those specialising in mental health care were “eminently trained and experienced” and “very well versed in dealing with people with that condition”.

Patients with BPD, Pope told InDaily, “invariably present to emergency departments often multiple times a week, even multiple times a day”.

He said that often hospital staff were reluctant to admit patients suffering the disorder, because admitting them carried the risk of making them “worse”.

And, he said, “quite rightly, staff are wary and need to be wary, because you can get trapped by (BPD sufferers)”.

“You have to be exceptionally careful.”

Pope said younger staff were often the target of manipulative emotional behaviour from BPD sufferers.

“They will be inappropriately friendly to you and then inappropriately nasty to you,” he said.

Chanen told InDaily that because of the nature of BPD, “clinicians will be often left with the feeling that (patients) are being deliberately provocative”.

“The behaviour is seen as wilful, and seen as under the control of the individual.

“They’re seen as being bad.”

He said a dismissive or discriminatory attitude towards patients with the disorder was the result of poor training rather than bad intent, and that many clinicians deal with BPD sufferers absolutely appropriately.

“Training in this disorder and skills for managing the disorder are very poorly taught in general, across the professions.”

Melinda is now in her forties and, according to her parents, “blossoming”.

The turning point came when Judy attended a 2012 BPD conference featuring Chanen and former Australian of the Year Professor Patrick McGorry.

“It made me realise that (Melinda) was not wilfully disobedient, which is what we were told,” says Judy.

“(She was) doing the best she could with the very deep emotional pain.

“I understood what she was feeling.

“Once I understood that, it made me calmer, and it made me able to talk to her.

“You feel such despair as a parent (because) you just don’t know what to do.

“You need to dig down, and be curious, and not look at what you’re being presented with and not react to the anger, but look deep into what that person is feeling, and validate that feeling. That’s what we’ve done. That’s what (made) the difference.”

“It is left to us to explain this to (other carers).

“Parents are left on their own.”

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