“Once we are gone we are terrified she will fall through the cracks of a health system which does not meet her needs, into a life too terrible to contemplate,” one carer reported about their daughter.
Another carer, describing the impact of caring for someone with borderline personality disorder, said it was “devastating. Thoughts of suicide for myself plague me. The stress on other relationships is overwhelming, Break up of a marriage is a constant fear.”
These were among the harrowing responses to a survey of members of South Australian BPD carers’ support group Sanctuary, released to InDaily.
The survey’s release coincides with the long-awaited publication of South Australia’s Action Plan for People Living with Borderline Personality Disorder 2017-2020 earlier this week.
Though the Government has now released the action plan, almost a year since it arrived on former Mental Health Minister Leesa Vlahos’ desk, it has no comment on what BPD advocates describe as its most important recommendation – a centralised hub for high-acuity personality disorder services and statewide coordination.
The survey of Sanctuary members, which received 57 responses, revealed:
- 80 per cent of carers were, themselves, being treated for anxiety.
- 52 per cent were being treated for depression.
- 40 per cent were being treated for sleep loss.
- 43 per cent reported their income had been “profoundly/significantly” impacted by their caring role.
- 74 per cent reported they had “no respite at all” from their caring role.
- 67 per cent reported no access to a community mental health worker.
- 50 per cent reported no access to a support worker from any provider.
The action plan, produced by the SA Mental Health Commission in consultation with a variety of stakeholders and released online this week, recommends the development of a business case for a Personality Disorder Hub for the state.
BPD advocates have, for years, argued for the establishment of a centralised hub, modelled on the success of a similar facility interstate.
BPD Foundation of Australia patron Janne McMahon OAM, who was on the steering group that developed the plan, told InDaily the establishment of the hub was “the most important part of the plan”.
“We would like as a matter of urgency for the government to action 4.1 (the section of the Plan recommending the hub) … as the most critically needed part of the plan,” she said.
The Government last month announced a $1.2 million policy involving training for hospital and community mental health staff in appropriate care for sufferers of borderline personality disorder, and the establishment of a team of “up to eight dedicated clinicians” to “provide specialist BPD support in the mental health system”.
McMahon later described the policy as “manifestly inadequate” and praised the Liberal Party’s election commitment of $10 million for a central BPD hub.
Though the action plan says that a business case for the central hub has been “supported”, the Government has refused to comment on whether it will actually establish such a facility.
InDaily understands that despite the receipt of the plan in November last year, SA Health has yet to decide whether a centralised hub facility is the most effective delivery method for BPD services and coordination.
An SA Health spokesperson told InDaily this week: “Our first priority is implementing these important changes (the $1.2 million policy) to how BPD services are delivered in local health networks so that no matter where people live they have close access to trained staff and services.”
“While our focus is on implementing these initial important changes in local health services, as we continue to roll out improved services for people with BPD, we will continue to look at best practice models around Australia and review how we can best provide these services.”
Asked whether he was satisfied with the Government’s response to the action plan, Mental Health Commissioner Chris Burns told InDaily: “the Minister placed a high priority on an Action Plan for People living with Borderline Personality Disorder.”
“We welcome SA Health’s response to the Action Plan as a positive step forward to better services for people living with BPD.”
The impact of BPD on carers
Asked to describe the impact of their loved ones’ illness on their lives, one carer reported to Sanctuary’s survey:
“Our lives have slowly shrunk as we have been forced to retreat from friends, family and employment due our daughter’s needs, and the shame and stigma attached to mental illness.
“Our physical and mental health has deteriorated as we contemplate our current and future states.
“My wife took early retirement which has cost us $100,000 – we supplement our daughter at least $10,000 per annum.
“As we age, we race against the clock to help our daughter build an independent life, worth living.
“Once we are gone, we are terrified she will fall through the cracks of a health system which does not meet her needs into a life too terrible to contemplate.”
Other carers reported:
“I don’t get a break, ever … It’s hell. I am damaged. I have lost confidence. I haven’t liked myself. I feel isolated from everyone. I feel alone. I am so sad for my daughter and her destroyed life.”
“Giving up the career I was trained for. Becoming a ‘care coordinator’ instead of a mother to my child. Loss of friendships. Missing out on family events due to my child’s behaviour.”
“My daughter has been raped twice and suicide threats have been ongoing. Our daughter has been addicted to both ‘pot’ and ‘ice’ over the past 15 years (thankfully, now clean but the ongoing threat/fear remains with us all). My wife has suffered from significant health concerns having had a stroke and chronic heart disease.”
“You live your life in turmoil. But everyone on edge, angry and unstable in the family home.”
“Very stressful. Big financial impact. Anxiety and worry about grandchildren. Depression.”
“It is a relentless journey, always walking on egg shells and always being hyper-vigilant. Increase in levels of stress and distress in own life due to disrupted and/or broken relationships, fluctuations in feelings of hope and hopelessness. It has caused our family much anguish as over the last ten years. It almost broke up my marriage.”
If you or someone you know needs support or crisis care, call LifeLine on 13 11 14 – or you can call the Mental Health Triage Service / Assessment and Crisis Intervention Service on 13 14 65.
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