55 recommendations - what do they mean?

It's not a revolution, it's a reform with a long view.

There will be some immediate changes in the public health system but for people at the ground level, people with lived experience of BPD (consumers and carers), the immediate changes will not be so obvious. One big immediate change has been the creation of Mental Health Reform Victoria who is responsible for implementing the recommendations of the Royal Commission. And what those 55 recommendations do is begin to lay the groundwork for long term change.

It was in the 1980s that the mental health asylums in Victoria were closed down. The focus was supposed to be on support within the communities where people lived. Today we have a mental health system where there is little support in the community and instead the focus is on a waiting list for treatment for those who can access hospitals when their illness is serious and complex. If you have the money you might be able to get private treatment. Those with BPD who have lots of money might even go to USA for treatment. The recommendations are designed in part, to provide that community support that is so lacking. For people with BPD, this is good news...in the long run.

A key focus for the reform is the participation of people with lived experience in the process. There is an emphasis on peer worker development and peer participation, to encourage people with lived experience (people with BPD and their families and friends) to be more actively involved in determining how the system works. The long term goal will be a mental health and wellbeing system run by people with lived experience. Again, this is great for the long term reform that is needed.

The challenge for people with lived experience of BPD, is the stigma and discrimination that exists. This means things like we don't even get counted as a mental illness in the National Mental Health Commission data, but we do note that in their report of 2019, they did commit to a feasibility study to investigate options for expanding the scope of disorders and high risk community groups. So, things are changing here too. 

In the short term, there is enough work to keep BPD Community busy filling the gaps that currently exist in the system and advocating for the necessary changes to replace stigma and discrimination with hope and optimism. For us, it's life as usual.

the report card says fail. time for reform!

The Victorian Mental Health System operates in crisis mode: only those who are at high risk get access to treatment.
The reforms announced yesterday by the Royal Commission are about placing the community at the centre of mental health and wellbeing. BPD Community welcomes the report and looks forward to continuing to be be a part of the solution.
The Final Report of the Royal Commission into Victoria's Mental Health System identify 65 recommendations and five volumes outlining the reforms, see below:

The system’s failures can be linked to its origins. In the 19th and 20th centuries, people living with mental illness were separated from the rest of the community and housed in institutions. These institutions began to be dismantled from the 1980s, with a desire to move towards a community-based model of care.

While there has been social change since then, such as a strengthened focus on protecting and promoting human rights and the consumer movement, Victoria’s mental health system has not kept pace. It has drifted away from its earlier aspirations of a community-based system and now relies too heavily on hospital‑based services and emergency departments.

BPD Community has struggled to work in this broken system and has successfully shown what can be done with an innovative, flexible and efficient approach to community based responses that include all people with lived experience. 

We remain hopeful and optimistic that our work can now be extended so we can support more and more of our BPD community in their individual journeys to recovery. We will continue to focus on relational support, building our sense community and peer led support at a grassroots level.

BPD Community is proud of the work it does we have been a part of the reform and will continue to lead the way on behalf of our community of people with lived experience of BPD.

THE THEMES THAT EMERGED:

• Investment in the system is poor.
• Getting help is difficult.
• Access to services is not egalitarian.
• The ‘missing middle’ miss out.
• Emergency departments as entry points of care.
• Dignity is often disregarded.
• Stigma and discrimination are ever-present.
• Our younger people are adversely affected.
• Families and carers are left out.
• Mental illness is even more complex for some groups.
• The mental health of Aboriginal communities.
• Suicide.
• Recovery.
• Trauma is unseen.
• The system is driven by crisis.
• Demand has overtaken capacity.
• Prevention.
• It is different outside Melbourne and in the bush.
• Alcohol and other drugs add another dimension.
• The workforce.

INTERIM RECOMMENDATIONS:

Recommendation 1: Establish a Victorian Collaborative Centre for Mental Health and Wellbeing
Recommendation 2: Targeted acute mental health service expansion
Recommendation 3: Suicide Prevention
Recommendation 4: Aboriginal social and emotional wellbeing
Recommendation 5: A service designed and delivered by people with lived experience
Recommendation 6: Lived experience workforce
Recommendation 7: Workforce readiness
Recommendation 8: New approach for mental health investment
Recommendation 9: The Mental Health Implementation Office

and then COVID entered the scene!

the publication of the final report was postponed to Feb 2021

The Royal Commission went online, BPD Community submitted another response following the release of our Position Paper on Prevalence, we spoke in a focus group and individually.

We await the final report of the Commission in anticipation that people with BPD get what they need and in recognition that it won't happen overnight. We also wonder what the Commission report will mean for organisations such as our own BPD Community.

create A Person‑Centred mental health system

We want change, the Productivity Report just released to the public doesn't challenge the existing system, its the existing system that fails us. 

The report recommends that 'governments should create a mental health system that places people at its centre'. Yet it confirms the medical model at its centre.

It says: "The needs, preferences and aspirations of the people who use the system, as well as their families and carers, should shape all parts of a person-centred system — from the work of the individual clinician to the policies proposed by decision makers — to create recovery-oriented services and supports." 

and, "A person-centred mental health system would enable people to access the combination of healthcare and community services that will best help them to recover from mental illness and to achieve the outcomes that matter to them. People should be empowered to choose the services most suitable for them, and these services should be evidence‑based and responsive to their cultural, social and clinical preferences".

The Productivity Commission recommends a nicer version of the same thing.

Click on image for the Productivity Commission Reports

demand a compassionate mental health system

position paper on prevalence - October 2020

Social isolation limits the support we receive informally from others.

A study just published by VMIAC a Victorian consumer organisation showed what we would expect: under 35 yr olds have been most  severely affected by the constraints of COVID19, social isolation in particular.

What these results show is that for people with a mental illness, their relationships are so important to them, they give vulnerable people a sense of support and belonging. This reinforces BPD Community's focus on developing skills and relationship building for people with BPD and giving families and friends the skills needed to improve their relationships with their loved ones.

To read more about the report click here.  

the effects of covid-19 conditions on people with eating disorders

Swinburne University has completed a study on the effects of COVID-19 conditions on people with eating disorders. As we could expect, people with eating disorders, like the rest of us, have found it a challenging time. One could predict that people with eating disorders would find it more difficult to manage their mental health under the added anxiety of the uncertainty of our times. Many people with BPD experience eating disorders, so this affects our BPD Community too.

“These results show that even during the very early stages of this pandemic, (roughly three weeks after the official announcement by the World Health Organisation), this group of people were already reporting spikes in these behaviours. This could have been due to increased stress, anxiety and depressive symptoms as a result of social distancing measures,” explains Dr Andrea Phillipou, a co-author of the paper commented.

The need for increased mental health support has been reinforced again. 

more than meets the eye

The BPD mask is how we hide from the really world how we really feel. Sarah describes the feeling of social isolation that people with BPD experience everyday. On the surface everything appears normal, below the surface is a cruel, debilitating psychic pain.  

BPD Community is a place where people can feel accepted, where they belong. But there is so much more that can be done. We at BPD Community are striving to do the simple things that can make such a big difference. You can help us, you can join our community.

This powerful, challenging video shows us that there is more than meets the eye.

Supplementary Submission to the victorian royal commission

Just our luck! The COVID-19 restrictions hit the week we were to speak with the Victorian Royal Commission into Mental Health. At that meeting we were preparing to explain our Theory of Recovery and the solutions we proposed to the current sad state of affairs that exists in relation to BPD. 

We have since heard that those meetings have not been postponed as originally planned, but are now cancelled. So, we have revisited the work we have done on this to to try encapsulate the essential elements and prepared the Supplementary Submission which you can access by clicking on the image opposite. We hope you appreciate it and if you have any questions or comments please contact barb@bpdcommunity.com.au   

What works?

It was a totally engaged audience at the last Info Night where Elise Carotte presented to the community the knowledge of what treatments are most commonly available in Victoria and why they work. She also provided a slide of where treatments can be sought in Victoria (note this last information is subject to change). Her slides are available for you - click on the picture opposite to access them.

mental health across the lifespan conference

On Tuesday 17th and Wednesday 18th of March, there will be a gathering of people to discuss the question of mental health across the lifespan in Victoria. There will be many important figures in the world of mental health of today. Minister Foley will be there, Pam Anders, the CEO of the new Mental Health Reform office in Victoria will be there, Dr Stephen King, the chairperson of the Productivity Commission into Mental Health will be there and heaps more people who are the decision makers in the field that directly affects us.

Also there will be people with lived experience both people with BPD and the families and friends. Mental Health Victoria has generously given BPD Community free tickets to allow our people attend. If you are interested in attending, please contact Barb at barb@bpdcommunity.com.au or on 0409 952 754, so she can explain what to do. 

BPD Community speaks to Productivity Commission

What a difference it would make if people with lived experience of BPD who have access to BPD informed treatment, social supports (eg employment supports) and relational supports (eg peer led support groups and psychoeducation). 

On 18 November BPD Community spoke to the Productivity Commission to critique its reliance on the medical model and complete rejection of the concept of relational supports and have prepared a supplementary Submission to the Productivity Commission (see link opposite) based on that presentation.

Consider who is there for the person with BPD 24/7: it is the family and friends who are there whether or not a person is in treatment and currently less than 2% of people with BPD are in treatment. Most people with BPD are unsupported and this is a shocking neglect. With training in psychoeducation, family and friends can learn how to better support their loved ones and people with BPD can continue to work on their own recovery. The Productivity Commission makes no acknowledgement of this and it is a glaring omission. Relational support for people with BPD and their families and friends is essential.

bringing families into the picture

Families are an essential element in the recovery process, they are there 24/7 for their loved ones. Including families in the recovery process is crucial to improve outcomes for people with BPD.

Professor Daniel Flynn, Ireland Dr Mary Kells, Ireland and Professor Robert Krueger, USA, are speaking at the one day Conference on 'Bringing Families into the Picture'. Costs are: Clinicians $295; Family members/Carers $145; Young People/ Concession $60. Click on image opposite for conference flyer.

NEA.BPD (Aust) is the Australian branch of the National Education Alliance of USA. They run the Family Connections program here and have sponsored some excellent training of professionals, such as bringing out Dr Alan Fruzzetti who is an expert on Dialectical Behaviour Therapy.

Orygen provides specialist mental health services for young people aged 15 to 25 who reside in the western and north-western regions of metropolitan Melbourne. Orygen is dedicated to helping young people early.

Victorian royal commission into mental health - interim report

The Royal Commission acknowledges that mental health is shaped by the social, cultural, economic and physical environments in which people live and is a shared responsibility of society.

It envisages a mental health system in which:

1. The inherent dignity of people living with mental illness is respected, and necessary holistic support is provided to ensure their full and effective participation in society.
2. Family members and carers of people living with mental illness have their contributions recognised and supported.
3. Comprehensive mental health treatment, care and support services are provided on an equitable basis to those who need them and as close as possible to people’s own communities—including in rural areas.
4. Collaboration and communication occur between services within and beyond the mental health system and at all levels of government.
5. Responsive, high-quality, mental health services attract a skilled and diverse workforce.
6. People living with mental illness, their family members and carers, as well as local communities, are central to the planning and delivery of mental health treatment, care and support services.
7. Mental health services use continuing research, evaluation and innovation to respond to community needs now and into the future.

Productivity Commission - Interim Report

The Productivity Commission interim report was released at the end of October. It says that we spend $18 billion on mental health but that it accounts for $51 billion in productivity costs. The Interim report identifies 5 key areas of reform:
Reform area 1: prevention and early intervention for mental illness and suicide attempts.    
Reform area 2: close critical gaps in healthcare services eg the right treatment for their condition.
Reform area 3: investment in services beyond health, eg housing.
Reform area 4: assistance for people with mental illness to get into work and enable early treatment of work-related mental illness.
Reform area 5: fundamental reform to care coordination, governance and funding arrangements

The Interim Report and related documents can be found here: https://www.pc.gov.au/inquiries/current/mental-health/draft it will be possible to make submissions to this report by Jan 2020.   

BPD Conference in Melbourne

The theme is the conference this is is: Best Practice Deserved. The key note speaker is Professor Jayashri Kulkarni who was recently featured in an article in The Conversation, proposing that BPD be reconsidered as Post Traumatic Stress Disorder. 

The first day of the conference, Thurs 14th Nov, is dedicated for professional training at Spectrum, the second day, Fri 15th Nov, is for people with lived experience, both consumers and carers, as well as those who work with BPD. Day 1 costs $145 for those in the not for profit sector, $195 for other professionals; Day 2 costs range from $20 for those with lived experience on a concession card to $250 for professionals working in the sector. The post conference networking event costs $30. Day 2 is at the Bayview Eden, Melbourne.

Coping with self harm

'I don't know what to do, I feel helpless' is a common cry for families and friends whose loved one self harms. There is a short simple booklet written in easy to understand language now available for free from Orygen. 

There are lots of simple techniques that can be immediately applied, it is a booklet with answers. It is reassuring to know that, "Although some people who self-harm may be suicidal, self-harm is often used as a way of managing difficult emotions without being a suicide attempt". 

To download the booklet, click on the picture at the right and complete the form to be transferred to the page to download.

Royal commission into mental health - teresa's statement

Teresa is a woman who has lived with BPD for all her adult life util she recently found the support that would help her navigate both the system and her own personal challenges. It was following a period of hospitalisation that she was assigned a 'friend' who could provide non judgemental support and this friend held Teresa's hand for the next six months.

Teresa was shocked at the challenges she had faced, while she struggled to understand what was happening. She had done well at school and university, graduating with a medical degree. All was in place for a good life, except she had BPD.  Click here to read Teresa's statement.

Royal commission into mental health - nicole's statement

Nicole describes herself as high functioning, she is successfully attending University, completing a degree in nutrition. She is just 22 and very brave. She spoke to the Royal Commission about her experiences in the mental health system. She was still at school when she was going to Headspace, she has now moved into the adult system and sees a psychologist for those 10 visits a year which is patently not enough and supplements this with a visit to the Uni Counsellor, she calculates she has 1 hour a month. This is of course not enough for a structured treatment program.

Tellingly, Nicole speaks about the distress of finding out that she was given a diagnosis of BPD, when or by whom she does not know. Her story can be read on the link opposite, we highly recommend it.

Royal commission into mental health - the system

This is a brief explanation of the Mental Health system in Victoria. The short video opposite describes 4 levels:

1. Primary health Care, eg the GP
2. Community Support and Clinical Services eg BPD Community, your Community Health Centre
3. Specialist Clinical Services eg Spectrum
4. Crisis Care eg Emergency Dept of your hospital, Lifeline, 000 

There is acknowledgement in this official video, that the system is broken. The issue now is, how to fix it. That's what the Royal Commission is about.

royal commission into mental health - hearings

Read Teresa's testimony to the Royal Commission. Her eloquent explanation of what BPD felt like for her is deeply moving.

She said it was after the last hospitalisation when she was assigned a 'friend' to support her and ease her way back towards recovery, that she was finally able to get on track. Click opposite to access the transcript. 

The Royal Commission is conducting public hearings at the moment. You can watch them live, I highly recommend it to anyone with an interest in mental health. click here to access the live stream. 

Royal Commission into mental health - submissions

The Royal Commission is accepting submissions now. However, if you are not accustomed to writing, it can be a daunting experience. There are some simple rules to help you make the best submission you can. This might take a few hours of work over a few days, so be prepared to give it the time it needs. The Commission is listening to us so we want to give them the best information we can. BPD Community wants to encourage ALL our people to make a submission (click on picture to the left). I have used examples that we know to show you how to do it.

A. Read and think as much as possible about what the commission says (click above). To make a brief submission (about 500 words or less) you have a choice of responding to 6 'questions':

1. How can the Victorian community reduce the stigma and discrimination associated with mental illness?
2. What is already working well and what ideas do you have to better prevent mental illness and to support people to get earlier treatment and support?
3. What ideas do you have to prevent suicide?
4. What makes it hard for people to experience good mental health and what can be done to improve this? This may include how people find, access and experience mental health treatment and support and how services link with each other.
5. What areas and ideas for change would you like the Royal Commission to prioritise?
6. Is there anything else you would like to share with the Royal Commission?  

B. Draft a rough copy

1. Think about one message you want the Commission to hear from you. Try to sum it up in one or two sentences. 
   eg "I think the Emergency Dept needs to improve how it responds to people who are suicidal." or
   eg "I think the police don't always respond appropriately."
2. Think about examples, incidents or experiences that can explain why you think as you do. Note the time, the place and the people involved are helpful to say at the start (when, who, where)
   eg "In 2017, I went to (you can name the hospital) emergency because I was suicidal."
   eg "In 2018, my daughter was high on ice, the police cornered her in the toilet of our home and then capsicum sprayed her."
3. Then explain why this was a problem. 
   eg "I was discharged 3 days later, with three temazapan. No follow up plan, no referral. I don't really remember much, I was really distressed at the time. I was 17. I didn't know what to do. I didn't have anyone who would look after me."
   eg "I was really worried for my daughter. She was really difficult for us. Another time when the police came, they were really good but this time they were pushy. My daughter was petrified, screaming with fear and then they capsicum sprayed her."

C. Reflect on what you have prepared, is that the best way to communicate what you want? Could you say it better? Could you use a different example? Which question does it fit best?

• The first example is easily fits the question on suicide (qtn 3) you would then want to consider what could have been done better, eg a referral to a mental heath service; a diagnosis; follow up after discharge. It could be used in qtn 4 also.
• The second example could be an example of stigma and discrimination if you thought the police were unfair. It could also be used in response to qtn 4.

Go from B to C as many times as you like with as many situations as you want taking care not to repeat yourself. You might want to make a list of different messages using one or more examples or you might want to make a list of examples to illustrate one message. The thing to ask yourself is "Am I communicating what I want to say?"

You might want to discuss your response with someone you trust and ask them to help you. You can ring Barb at BPD Community on 0409 952 754. 

D. Now you are ready to begin your response:

• write a your response out.
• read it carefully or get someone else to read it
• fix your mistakes (we all make typing mistakes, grammar mistakes) we want this to be the best possible piece of writing we can do. 

E. Copy and submit your response (access the site from the link above). Make sure you have a copy of what you write so you can read it later. Celebrate your achievement! It is not easy.  

Royal Commission into mental health website

The Royal Commission into Mental Health has hit the ground running! They had set up their website (see on right) and determined a whole lot of times to travel around speaking to people. They are visiting rural, regional Victoria and suburbs in Melbourne too. This is the best time to go and get a sense of what is happening and they will be listening to what people say.

If you want things to improve for our BPD Community, this is a chance to speak your own experience and have a say. 

All about bpd

SANE has published an excellent paper on BPD exploring all the challenges and contradictions and confusions that exist here in Australia in relation to this diagnosis and that of other personality disorders. It indicates the need that exists for an Australia hungry for information on BPD  "in the 12 months to 31 July 2017, 22% (230,000) of all users (1,048,000) who visited SANE’s online platforms accessed materials on BPD, including factsheets and other information". 

The paper is a weighty discussion of the situation in Australia regarding all Personality Disorders, with a focus on BPD. It is a solid read requiring a pencil in hand, a comfy chair and a fair bit of time. The rewards are considerable if you make the effort.  

Royal commission into mental health

The composition of the Royal Commission into Mental Health was announced this week. The Chair will be Ms Penny Armytage, fellow Commissioners are:  Bernadette McSherry, Professor Alan Fels and Associate Professor Alex Cochrane.

They will produce a preliminary report this coming November and a final report by October 2020. The government has committed to implement every recommendation but it is understood that this will all take time.

The Terms of Reference have been finalised. We will make them available shortly.

For further information the ABC report is informative: click here