Burke, Mr R.

Adjourned debate on motion of Hon. K. L. Vincent:

That this council notes the contribution to the mental health sector of Robert Burke and:

1. Congratulates Robert Burke on being joint winner of the Dr Margaret Tobin Award in the South Australian Mental Health Excellence Awards;

2. Acknowledges the ongoing leadership and commitment of Mr Burke and Mrs Judy Burke to promoting the role of family carers in mental health; and

3. The ongoing difficulties faced by families of people with borderline personality disorder and the role of community based support groups.

(Continued from 9 August 2017.)

The Hon. J.E. HANSON (17:34): Firstly, I wish to congratulate Mr Robert Burke on jointly winning the Dr Margaret Tobin Award in the South Australian Mental Health Excellence Awards. Robert was a mental health carer and an advocate for recognition and satisfaction of mental health carers' and consumers' needs. He and his wife Judy cared for their daughter for over 40 years, learning about her illness and finding support for her. Mr and Mrs Burke have been integral in promoting the voice of mental health carers and in providing them with information and support. SA Health recognises the importance of the role of carers in walking with their loved ones on their recovery journey by funding a number of carer support groups and respite services that provide valuable education and networks to South Australian carers.

BPD is a significant mental illness where people experience difficulties in regulating emotion. Everybody struggles with their emotions, but people living with BPD may experience emotions more intensely and have difficulties in regulating those emotions. The National Health and Medical Research Council clinical guidelines state that BPD is a common mental illness associated with severe and persistent impairment of psychological function, high risk for self harm and suicide, a poor prognosis for coexisting mental health illness and heavy use of healthcare resources. International data shows that the suicide rate amongst people with BPD is higher than that of the general population. Estimated suicide rates among people with BPD range from 3 to 10 per cent.

The development of BPD is thought to involve a combination of biological factors, such as genetics, and experiences that happen to a person while growing up, such as trauma in early life. Over 80 per cent of people living with BPD report a history of trauma, with many also having a diagnosis of post-traumatic stress disorder. For most people living with BPD, symptoms begin to emerge during adolescence or as a young adult. Left untreated, BPD has a significant impact on the life of an individual and their loved ones.

People who live with BPD have historically met with widespread misunderstanding and blatant stigma. However, evidence-based treatments have emerged over the past two decades which reveal that BPD is a highly treatable illness, bringing hope to those diagnosed with the disorder. Through the difficult life circumstances caused by the illness, people living with BPD often have greater contact with a number of agencies and service providers, including emergency departments, general hospitals and mental health services, drug and alcohol services, ambulance services, police and correctional services, general practitioners and NGO community services and housing services.

The South Australian government is committed to working with all relevant parties to continue to get the best outcomes for people living with BPD and, indeed, for their loved ones. The work of Mr Burke and advocacy groups such as Sanctuary show that the responsibility for early identification, referral, assessment, treatment and support for people living with BPD in South Australia is shared. The responsibility spans across the community, including the primary healthcare system, the public and private mental health systems, hospitals, correctional services, forensic services, schools and other government and non-government agencies. Good mental health should be everyone's business.

The Hon. T.A. FRANKS (17:38): I rise to support this motion and to make a few comments. I congratulate the now late Robert Burke on being a joint winner of the Dr Margaret Tobin Award. I acknowledge the ongoing leadership and commitment of both Robert and, of course, Judy Burke, who is here today, in their leadership and in promoting the role of family carers in mental health, as well as all their fine work with Sanctuary and their absolutely tireless efforts to support not just their daughter but all our sons and daughters and those who have been affected by BPD in this state.

BPD is often referred to as the Cinderella of mental illness. While mental illness is often shunned, BPD is shunned even further within the health sector. It is both misunderstood and maligned. It is something, however, where there is hope. It has often been put into the too-hard basket and unfortunately it has continued to be put into the too-hard basket by governments in this country. Bob and Judy should never have had to do what they have had to do. They should have been able to access supports already in existence and provided through the government and our health system. They have had to step up and I think it is about time that we as members of this place stepped up and came good with the various commitments that have been made. There are promises now on the table but they have yet to be delivered.

We know that a stand-alone service, a holistic service for BPD would have a great impact. We know it would keep people out of emergency departments, we know it would keep people alive, we know it would keep people from getting to a point where they feel they are beyond help or indeed take their own lives. Why have we not seen that happen? Unfortunately I have to reflect that Bob will never see that happen, but I certainly hope that we see action rather than just more words in the coming months.

Those who suffer, live with and support loved ones with borderline personality disorder do not live a glamorous life. They need all the support that we can offer them. I often reflect that when it was being explained to me what borderline personality disorder was, Marilyn Monroe was said to have had borderline personality disorder. Of course we equate her with some level of glamour, with eternal beauty, but we know that her life was a troubled one. We want to see less people with troubled lives like that and less people with lives that are shortened.

With those few words, I commend Judy, I honour Bob, and I honour all those involved in championing and fighting for better treatment for those who have borderline personality disorder. I note that there is a cure, it can be resolved and there is hope. It is imperative that we come to the party with real hard cash and real services in the near future so that those in our state do not die needlessly or suffer needlessly. With those few words, I commend the mover of the motion and the motion.

The Hon. S.G. WADE (17:42): I rise to support the Hon. Kelly Vincent's motion to recognise the work of Robert and Judy Burke and the significant and enduring contribution that they have made to improving the state of mental health services in South Australia. It is with sadness that we note that Mr Burke passed away earlier this year, and in recognising the presence of his wife Judy and members of her family in the gallery today I would like to express my condolences. I would also like to acknowledge other friends of Judy Burke in the gallery including Dr Martha Kent, one of the state's leading practitioners in this area.

Bob and Judy made a great team and had a real impact to improve the lives both of people with a mental health challenge and their carers. The advocacy of the Burkes on mental health, and especially in relation to borderline personality disorder, has been energetic and authoritative. Of course, that authority comes from the lived experience: their experience of raising their own daughter who lives with BPD. The Burkes wrote to me in October last year a few words that captured the sadness as well as the frustration they feel in relation to the mental health sector in South Australia, and I quote:

When our daughter is looked after well, we can cope with the grief and sadness but it is so distressing for all of us when she gets short shrift from clinicians and others in the mental health system. We just stand by hopelessly as she gets more and more unwell, knowing that she is not getting the care and compassion she deserves.

The experience of the Burkes is the experience of so many other families. As the Hon. Tammy Franks referred to, whilst mental health is so often associated with stigma, that is doubly true of BPD. The advocacy of the Burkes has been influential. It has played a significant part in the growing awareness of the need for and commitment to specialist services for BPD. The Liberal Party, along with other parliamentary groups, has benefited from that advocacy and the way that Judy and Bob worked with other advocates including Dr Kent and others in raising that awareness.

For years the Liberal Party has been working, particularly with Dignity and the Greens, to push this case, and this year we are delighted that the Labor Party has joined us. We are now in a position where both major parties are committed to a statewide specialist service. I noticed the Hon. Tammy Franks' touch of scepticism, I think it would be fair to say, but I must admit that I suffer from chronic optimism and I certainly believe that within the next parliament we will have addressed, or at least made a start on, the provision of a better response to people with BPD.

As I said, for a long time Bob and Judy struggled to deal with stand-offish clinicians and a system that was obstinate and cold. After their daughter was diagnosed with BPD they were told by a psychiatrist to abandon her and move interstate. Thankfully they did not, because this day might still be coming if not for their advocacy.

Bob and Judy found themselves in many uncomfortable conversations with health practitioners in the sector, some which might well be described as callous. Having said that, they also encountered kindness and consideration. The Burkes have struggled through the system, and out of that struggle they learned an enormous amount about the strengths and shortcomings of the mental health system. Out of that struggle also emerged a desire to help others with similar experiences.

In February 2012, Bob and Judy founded Sanctuary, a support group for carers, family members and friends of people with BPD, and it is a tribute to their leadership that the group now has well over 100 members. Its members recognise the benefits of sharing experiences about BPD and of dealing with mental health challenges together rather than alone. Through Sanctuary, Bob and Judy have been able to share the lessons they have learnt with other families struggling with BPD.

It is almost a relief to know that before Bob left us his contribution was recognised in him being a joint winner of the Dr Margaret Tobin Award at the South Australian Mental Health Excellence Awards. That award recognises exceptional leadership and commitment to mental health and wellbeing in our state, and it is certainly a worthy award.

In closing, I would like to reiterate my thanks to Bob and Judy for their profound contribution, for influencing so many people as they care for loved ones with mental health challenges and for enriching our approach to mental health in South Australia. I look forward to new BPD services being codesigned with people with lived experience, including families and carers, so that people with mental health issues, including people with borderline personality disorder, can have their health needs met.

The Hon. K.L. VINCENT (17:48): To sum up, I would like to acknowledge the contributions of my parliamentary colleagues: the Hon. Mr Hanson, the Hon. Ms Franks of course, and the Hon. Mr Wade. As others have done, I acknowledge the presence in the chamber of Judy Burke, the wife of the late Bob, other members of the Sanctuary support group, and friends as well. Thank you for honouring us not just with your ongoing advocacy but also with your presence here today.

I would like to pick up on a few comments that have been made by my colleagues and also to reiterate, I suppose, the very genuine intent with which many of those comments have been made. Of course, today we are not just honouring but unfortunately remembering the late Bob Burke, a winner of the Dr Margaret Tobin Award for his work, together with his wife Judy, in establishing and for many years, since 2012 until the time of his death, running the Sanctuary support group, a support group for carers, friends and family of people with a borderline personality disorder diagnosis.

First, I want to touch on one particular comment from the Hon. Mr Hanson in which he stated that as many as 80 per cent of people with a BPD diagnosis have experienced trauma in their lifetime. While I acknowledge that trauma can be a common factor in the development of BPD, I think it is important to acknowledge that that statistic is somewhat debated. It is important to acknowledge that BPD does not always result from trauma and neither does trauma always result in BPD. It is a far more nuanced and complex issue than that. While I do not believe that there was any malice from the Hon. Mr Hanson in making that statement, I want to acknowledge that that statistic is somewhat open to debate. Other than that, I thank him for his contribution.

The Hon. Ms Franks reminds us that BPD is often regarded as the Cinderella of mental illnesses, unfortunately not for glamorous reasons. It is not as glamorous as it might sound because of course Cinderella was always the bridesmaid and never the bride, if you like, when it came to Disney princesses. She was often shunned, hidden away, told not to seek help or seek support or to go out into the community, and there are many parallels with the common experiences of people with BPD.

There are those within the medical profession who still deny the existence of borderline personality disorder as a mental health issue in its own right. There are those who see those with BPD as simply being attention seeking or perhaps reaching out because of trauma they have experienced, as the Hon. Mr Hanson touched on—again, with the best of intent. But at the end of the day, no matter what the reason that somebody is in pain, no matter what the reason that somebody is reaching out for help, it is up to us to acknowledge that experience and acknowledge that need and provide that support and that help.

I am pleased to see that it is gradually changing, not as quickly as any of us in this chamber today would like, I am sure, and we certainly have a long way to go. Of course, the Hon. Ms Franks also reminds us that, as much as there is room for improvement, there is already a cure, namely, most commonly, dialectical behaviour therapy (DBT). DBT is an interesting form of therapy for many reasons, not least of which is the fact that it was developed by a woman called Marsha Linehan. I have never been 100 per cent sure how to pronounce that name and I have not yet had the pleasure of meeting her, so she has not yet been able to correct me.

Through my reading, I have come to understand that Dr Linehan herself, if not diagnosed with BPD, at least experienced something very similar herself and I think that goes to the Hon. Mr Wade's point about the authority of lived experience and how it is often the lived experience that can lead to the most effective treatments and therapies because it has actually been developed by people who understand deeply what it is to go through this and what does and does not work.

Often in this place, I am talking about people with disabilities or people with mental health challenges or elderly people or people from other minorities or with other challenges, and I often state that people need to be recognised and respected as the experts in their own lives. That is never more true than in the case of effective treatment for a host of mental health issues, not just BPD but others as well, and that is why it is fantastic that we are seeing a gradual increase in the use of strategies like peer mentoring and peer networking in the mental health community.

Long may that continue, but we have a long way to go, which leads me nicely to the next steps. The Labor government has finally joined me and my parliamentary colleagues from the Greens and the Liberal opposition in committing funding to a borderline personality disorder centre of excellence in South Australia—a spoke-and-hub specific model, which the Hon. Ms Franks touched on the importance of—for the treatment of people with borderline personality disorder.

It is incredibly frustrating that it is only after six or seven years of lobbying that we have finally got to this point and got the government to see not just the sense but also the dollars and cents—it is an old one but it works well—the money that stands to be saved from getting people well again, from getting them back into employment, back into community, back into family life and not presenting repeatedly to hospital and to emergency departments, which alone are incredibly expensive. Even a one-off event presenting to an emergency department is incredibly expensive, so when you have repeat presenters the bills certainly do add up.

I do not say that to make people who might be listening to this presentation who are themselves diagnosed with BPD feel any sense of guilt about racking up that bill, because absolutely I understand that the only reason they need to do that is because their current effective therapies are not readily enough available. I do not want anyone listening to this speech to feel guilty for that, but I think it just goes to show how poor the recognition and response to borderline personality disorder in this state has been that people feel they have no other choice often but to report that they are at imminent risk of self-harm and present to hospital or, even worse and even more tragically, go through with self-harm in order to feel able to present to hospital.

It is hard to put into words exactly what kind of a place you have to be in to take that course of action and exactly how terrible it feels when you are so far down in that deep place of darkness and emptiness and despair that you feel that is the only course of action available to you. To then have family members, friends or, even worse, health professionals turn to you and say that your experiences are not valid, that you are just attention seeking and that you should be able to control these urges or the experiences—to say it is kicking people when they are down is insultingly simplistic, but I struggle to think of another analogy.

As my colleagues have reminded us, as we have together done many times in this place, there is a cure. That can only be available though with effective, holistic investment from all levels of government, from all parties and wherever necessary to ensure that that is readily available and that people no longer feel the need to go through with those desperate courses of action and to seek out the appropriate support.

As colleagues have already reminded us, as many as 10 per cent of people with a BPD diagnosis will end their lives by suicide. I do not know the exact statistics, but from my experiences, both personal and working with constituents, I dare to say that often that is not even intentional suicide. That is not to say that makes it any better or any worse, but that is to say that there are people who are crying out for help who feel that their only option is to go through with these drastic measures.

As is the case with many people who are considering suicide, they do not actually want to die; they just want the pain to die. They cannot see any other way, currently, without effective treatment, than to take these drastic measures that no person should ever be in a position to have to even consider let alone carry through.

Other colleagues have labelled themselves eternal cynics. Others have labelled themselves eternal optimists. I might go as far as to label myself a chronic optimistic cynic. We do know that the government has finally publicly come to the fore and agreed to commit funding to this important project over the next few years to finally catch up with what other states, like Victoria and New South Wales through Project Air and also Spectrum, have had in place for many years and have had great success with.

Of course, implementation is the next challenge and the devil will always be in the detail, but there is a meeting between myself and representatives from the Department of Treasury and SA Health, as well as many of the good people behind me this evening, to ensure that we get the ball rolling in making sure that this project does get underway absolutely as soon as possible so that we do not lose any more people to this horrific—unnecessarily horrific, I might add—illness. I am very much looking forward to that work. I thank those behind me who have put up their hand to be a part of those ongoing discussions because, again, I think that goes back to the importance of lived experience being the only way to achieve effective, holistic results.

If nothing else, I think the last thing I need to do today is, of course, once again place on the record my thanks to Bob for his ongoing work. I only wish he was here to see what is happening now and what will happen since. My thanks to Judy and other members of Sanctuary for carrying on in some very difficult times, not the least of which was the loss of dear Bob, and also to remember those constituents, family members and friends who have already lost their lives to this terrible experience.

It is perhaps most important to say to those who are still waiting that there may well be people out there who do not believe that what you are going through is genuine, and do not believe that what you are going through is worth investing in, but I hope that what has been said in this chamber here today and, indeed, before and hopefully long beyond, shows you that there are many, many more who do and will continue to fight for you. So, please, know that you are worth it, know that we are fighting for you and hold on. Thank you.

Motion carried.

Sitting suspended from 18:01 to 19:45.