Tandem eNews 17 June 2021

Tandem: representing Victorian mental health carers

 

 

Dear members and supporters,

Victoria’s new Mental Health and Wellbeing Act is in development.

The Victorian Government has published a public Update and Engagement Paper for the new Act on the Engage Victoria website.

Public consultation is open until Sunday July 4th.

Tandem is preparing a submission on the behalf of members to address each section of the paper:

  • the objectives and principles of the new Act
  • non-legal advocacy, supported decision-making and information sharing
  • compulsory treatment and assessment, seclusion and restraint
  • governance and oversight in the new Act.

We would like to invite you to join a consultation session as part of a special Tandem Time from 10am to 11am next Thursday 24 June via Zoom.

The consultation session will help to guide our submission.

If you can, read the Update and Engagement Paper before next week’s session.

You may also want to make a submission of your own. You can also do this via the Engage Victoria site.

We look forward to seeing those of you who can join us next week.

In this eNews edition

    • Introduction and invitation to a special Tandem Time
    • Co-researcher roles for family/carer lived experience workers
    • Special access tickets for Mental Health Victoria’s ‘Preparing for Reform’ symposium
    • At Home with Satellite – plus Satellite Slam postponed
    • Tandem Support & Referral Line
    • Other Mental Health Helplines and Webchats
    • Join the Tandem Family

Co-researcher roles for family/carer lived experience workers
Have you worked as a family/carer lived experience worker?  The University of Melbourne and the Centre for Mental Health Learning have paid ‘co-researcher’ roles available for people to join a co-designed research project investigating the experiences of family/carer lived experience workers employed in mental health services in Victoria.
The deadline for submitting an Expression of Interest has been extended to Monday 21 June. Find a copy on our website.

Special access tickets for Mental Health Victoria’s ‘Preparing for Reform’ symposium

MHV has a limited number of free tickets on offer for ‘Preparing for Reform’, their online symposium on 29 June 2021 from 9am-3pm.

These tickets aim to allow access for people with lived experience of mental illness, their family members and carers.

Simply contact conference@mhvic.org.au with your details. For more info about the symposium see mhvconferences.com

At Home with Satellite – plus Satellite Slam postponed

At Home with Satellite is a fun, creative program that offers connecting activities for children and young people aged 8-14 years old (approx.) that runs during the school holidays.

Satellite’s ‘At Home’ program provides a curated selection of activity-based self-care packs and online workshops.

Their next ‘At Home’ workshop is a two-part series called All Superheroes Wear Masks. The first workshop will take place on Monday 28 June and the second workshop on Monday 5 July.

Monday 28 June and Monday 5 July:
10 – 11am
(for ages 8 – 11 years approx.)
1 – 2pm
(for ages 12 – 14 years approx.)

Find out more from the Satellite Foundation website.

The Satellite Foundation has also informed us that due to the current COVID-19 restrictions, Satellite Slam will now take place on Thursday 14 October and will form part of Mental Health Week from 9 – 16 October.

If you have already booked tickets, you will receive an email  about the change in date and your tickets. If you have not yet booked tickets, you can do so via the Satellite Foundation website.

You can access the complete newsletter via the link below:
https://mailchi.mp/5b62b1050ac9/dfxn4oqrm0-4757088?e=34088e3417

 

Tandem eNews 8 June 2021

Dear members and supporters,

Happy Pride Month and welcome to the rainbow edition of eNews!

This edition creates an opportunity to share some of the recommendations in the Royal Commission final report that are specific to the LGBTIQA+ (lesbian, gay, bisexual, transgender, intersex, queer or questioning and asexual) community. We have profiles of some of our partners in the community – particularly Switchboard’s Rainbow Door service, which has been funded to play a significant role as an entry point into the mental health system for LGBTIQA+ people and their families moving forward.

We’ve collated a selection of resources that may be helpful for family and friends of LGBTIQA+ people, as well as our usual resources for all families and friends – including an update on the COVID-19 vaccination program, some ‘Pop Up’ wellbeing sessions for carers, new programs for young people from the Satellite Foundation and more.

Don’t forget to come along to our June Members’ Meeting this Thursday from 10am-12pm, which will include a presentation on the Royal Commission’s final report and an important consultation session; ‘What do we want to see included in the new ‘Mental Health and Wellbeing Act?’

We hope to see you there!

      • Introduction
      • The Royal Commission final report: What’s in it for our LGBTIQA+ community?
      • Next Tandem Members Meeting – this Thursday
      • Introducing Rainbow Door
      • Introducing queerspace
      • Resources for families and friends of LGBTIQA+ people
      • Update on the COVID-19 vaccination program
      • Free tickets for Mental Health Victoria’s ‘Preparing for Reform’ symposium
      • Pop Up wellbeing sessions for carers
      • At Home with Satellite – plus Satellite Slam postponed
      • Tandem Support & Referral Line
      • Other Mental Health Helplines and Webchats
      • Join the Tandem Family

     

    Your story is powerful

      • .  Join Tandem’s community of family and friends to advocate for a safe, inclusive, fair and funded mental health system in Victoria.

    Join

    The Royal Commission final report: What’s in it for the LGBTIQA+ community?

    The final report from the Royal Commission into Victoria’s Mental Health System recognised what many other reports have also found – that Victoria’s LGBTIQA+ community experience significantly worse mental health than other members of our community. Most frighteningly, La Trobe University’s recent Private Lives 3 study found that 74 per cent of LGBTIQA+ people have experienced suicidal ideation over their lifetime (compared to roughly 16 per cent of the general population), and that 40 per cent have experienced suicidal ideation recently (compared to just 5 per cent of the general population).

    It’s important to note that these mental health struggles don’t have anything to do with being LGBTIQA+ itself: they relate directly to the stigma and discrimination experienced by this community, including from mental health services.

    There are two recommendations within the report that are specific to the LGBTIQA+ community:

    1. To provide recurrent funding to Switchboard Victoria to deliver its Rainbow Door program, at scale, to support LGBTIQA+ people to navigate and access the mental health and wellbeing system (part of recommendation 34 – ‘Working in partnership with and improving accessibility for diverse communities’ – which you can find in Volume 2 of the report) and
    2. To co-produce an aftercare service for LGBTIQA+ people following a suicide attempt (part of recommendation 27 – ‘Facilitating suicide prevention and response initiatives’ – which you can find in Volume 3 of the report)

    Recommendation 34 contains other aspects that will impact the LGBTIQA+ community too. These include a recommendation to collect and report data on diverse communities and to support community-led organisations to design and deliver mental health and wellbeing information and awareness campaigns, and to assist their communities to navigate the mental health and wellbeing system.

    Numerous recommendations mention ensuring that people from LGBTIQA+ communities are included and represented.

    Recommendation 41 aims to address stigma and discrimination, and recommendations 16 and 17 focus on creating mentally healthy schools and workplaces, including through anti-stigma and anti-bullying programs.

    It’s important to note that the publication of the final report is only the beginning of the process of mental health reform: we are now entering a period of intense discussion and consultation that will determine how each of the recommendations are implemented, and where the inclusion of LGBTIQA+ voices will be important.

    If you’re part of the LGBTIQA+ community and care for or support someone with mental health issues, we would like to encourage you to join our carer register as one way of participating in consultation sessions as part of the mental health reform process. If you’re interested, please email mhcregister@tandemcarers.org.au

    You can access the complete enews via the link below:
    https://mailchi.mp/147301cd27dc/dfxn4oqrm0-4756180?e=34088e3417

Inner South Family and Friends 30th Annual General Meeting and Birthday Luncheon

Mailing address: Inner South Family and Friends
C/- Alfred Mental and Addiction Health
PO Box 315, Prahran 3181
Office address: LEVEL 4, Spotless Building,
549 St Kilda Road, Melbourne 3004
Telephone: (03) 9076 4722
Email: isfaf@alfred.org.au
Website: http://www.ispaf.org
Chair: Judi Burstyner, BDSc, LDS, PhD
M: 0425 723 746
judi.burstyner@gmail.com

NOTICE OF 30th ANNUAL GENERAL MEETING AND INNER SOUTH FAMILY AND FRIENDS 30th BIRTHDAY LUNCHEON TUESDAY 13 JULY 2021
4th floor, Uniting Prahran, 211 Chapel Street Prahran 3181

12.15pm: AGM
12.30 pm: Gourmet Birthday Lunch

Guest Speaker
Robyn Humphries, co-founder of ISFAF, Director Clinical Operations (Mental Health) Monash Health, formerly Project Director Mental Health Branch DHHS, Manager Northern Area Mental Health

Nomination, Proxy and Application Forms for Membership  are attached/enclosed and must reach isfaf@alfred.org.au by noon Thursday 8 July 2021 or, in consideration of slow postal service due to the pandemic, by private arrangement with ISFAF Secretary directly on elenikontos@icloud.com or mobile 0412 018 722 by 10 am on the day of the AGM.

Seating is limited. Bookings are essential by Tuesday 6 July 2021.
Please email judi.burstyner@gmail.com  to book. Dietary needs will be accommodated wherever possible.  Please advise of any special dietary needs at time of booking.

For enquiries contact Judi on 0425 723 746
We thank Alfred Health Carer Services and the Victorian Government via DHHS
for their generosity in making this function possible.
Donations for the general maintenance of ISFAF are always very welcome.
http://ispaf.org

Proxy – 30th AGM 2021

Nomination form for ISFAF Committee Membership June 2021

Application form for membership 2021

Tandem eNews 18 May 2021

Dear members and supporters,

We are resending yesterday’s edition of eNews, as we published an error in the progress update from Mental Health Reform Victoria. In the introduction to this section yesterday, we mistakenly referred to the Lived Experience Advisory Group as being from MHRV, which is not the case.

This has been corrected, and we apologise for the mistake.

Today’s version also contains a notice about Health Condition Support Grants available to Victorian peer support groups, so is well worth a reread!

We’re extending our survey one last time to capture the voices of as many family members and other carers and supporters as possible.

If you haven’t completed the survey yet, please do so today by clicking on this link.

Please also forward this edition of eNews or a link to the survey to your networks, and encourage anyone who has experience supporting a family member or friend with mental health issues to complete it.

There is a lot happening in mental health right now: in this edition of eNews we also have an update to share on how things are going with implementing the recommendations from the Royal Commission’s interim report, as well as information on the Federal Budget and our commitment to promote equality for, and end discrimination against, the LGBTIQA+ community by signing the Embracing Equality Charter and Pledge.

We are pleased to let you know adults and children with underlying medical conditions(which includes those with severe mental health conditions) and their carers are eligible for phase 1b to receive a COVID – 19 vaccine.

Finally, don’t forget that Tandem Time is on next Thursday May 27, featuring guest speaker Rebecca Halpin from the Mental Health Priority Communities Division at Victoria Police. Rebecca will share information and hear your concerns about situations when you call the police for the person that you’re caring for or supporting.

    • Introduction: We extend our survey again
    • An update from Mental Health Reform Victoria
    • Our digest of recommendations 3-7
    • The Tandem team goes rainbow
      Tandem marks the International Day Against Homophobia, Biphobia, Interphobia & Transphobia
    • Tandem Time with Victoria Police
      What to expect when calling the police in a mental health crisis
    • Next Tandem Members Meeting – Thursday June 10
    • The Federal and State Budgets
      A short update on the Federal Government’s $2.3 billion mental health spend – plus what we know so far on the State Budget.
    • LGBTIQA+ Health and Wellbeing Reports
    • Health condition support grants program applications open
    • Tandem Support & Referral Line
    • Other Mental Health Helplines and Webchats

You can access the complete enews via this link:

https://mailchi.mp/a80126cef8cb/dfxn4oqrm0-4754328?e=34088e3417

A tribute to our Inner South Family and Friends member Judy Bednar 28 September 1942 – 15 May 2021

 

Judy (Judit) Bednar was born 28 September 1942 to Imre and Ilona Grosz (later Gordon). The birth of a Jewish baby in Europe during WW II is a miracle in itself, but the survival beyond the Nazi occupation of Hungary commencing in March 1944 is miraculous beyond measure. In 1949 Hungary was plunged into Communist dictatorship. Judy’s parents were jailed for attempting to escape to Austria, but they finally succeeded during the 1956 Revolution, arriving in Sydney in early 1957. As refugees/ asylum seekers, the family needed Judy to immediately enter the workforce at age 15. Tragedy struck again the following year when her mother died of cancer. A difficult relationship with her father led her to early independence in a boarding house where she met and soon married Joe Bednar. They separated two years after Tommy’s birth. Judy’s wise management of their limited income enabled them to buy a house in Rose Bay, which they sold after their divorce. Proud of her Jewishness, she started wearing a large Star of David to deter Joe’s friends’ anti-Semitic comments in her presence. She proudly continued to wear it to her end. Judy and Tommy moved to Melbourne in the early 1970’s to join her father and stepmother. Despite her limited education, she had risen to becoming an accomplished bookkeeper, always finding work to provide the best for Tommy. Her wise management of finances enabled her to buy a flat in East St Kilda. However on retirement she realized that to provide for her later years she would need to move from the area that remained the primary focus of her friendships and life. Tommy was diagnosed with schizophrenia as a pre-teen, but, in keeping with the medical view of the time, to avoid ‘labelling’ him, the diagnosis was withheld until later. Cannabis use in his 20’s increased Tommy’s paranoia, leading to difficult and frightening years. Loss of his job as a taxi driver at the start of Covid in 2020 led to dangerous cannabis use and the steep downward spiral that led to tragedy. Unfortunately, Tommy never had the insight to accept that he would benefit from mental health care. Instead he lived with many delusions about the world around him, constantly blaming Judy for anything he could think of. Judy had lived in fear of Tommy’s delusions for decades, repeatedly seeking help for Tommy and protection but the system failed them each time. She joined Inner South Family Friends (ISFAF), carer support group about 25 years ago. Her commitment, efficiency and meticulous management of the Treasurer role was a great asset to ISFAF for many years. Even after her move to Chelsea about 10 years ago, she was always willing to help the group and its members.

Judy was an intelligent, wise lady who dedicated her life to trying to help her beloved son, Tommy. She made an enormous effort to find help for him, but despite showing them evidence of Tommy’s mental ill health, threatening texts, aberrant behaviour to others around him, mental health services failed to heed her warnings. She lived in the fear that his assaults on her property and malicious behaviour would end in tragedy. The system provided her with CCTV but despite having tried hard to set up a monitored personal alarm, no authority assisted her in this endeavour. When she moved to Chelsea, she joined the local carer support group, Peninsula Carer Council (PCC) while remaining active in ISFAF. Aline Burgess the Community Liaison Officer of PCC wrote that:: ‘Throughout the lockdown I had the privilege of sharing many long heartbreaking conversations with Judy Bednar, sometimes very late at night. Judy was a truly remarkable person who knew that behind the bizarre mask of mental illness there was a beloved son with a severe mental illness . Even in the darkest moments of despair and fear, her love was obvious. Judy faced enormous challenges with such courage, skill and unconditional love. What a different outcome there might have been if the police and the hospital had really listened to her as she begged for help and for the right to be part of treatment decisions. My hope is that sometime in the future, when Tommy faces the reality of his alleged actions he will know, that, in spite of everything that happened , his mother loved him dearly.’ It is hard to believe that in 21st century Australia, an alleged beacon of civilization and health care, despite her attempts to obtain help for Tommy, Judy was merely patronized and Tommy’s psychosis left to run its course. Prevention is a major focus in all other fields of health care. However Judy’s preventable death highlights the chasm between all other fields of health care, and the mental health system.in which the system frequently hinders both prevention and the provision of appropriate care and risk management. We will miss Judy’s friendship, smile, intelligent assessment of situations – always uttered at her breakneck speed to match her sharp intellect – and her decades of dedication to Tommy. Vale Judy, you Rest in Peace… but we will not rest until the system is fit for purpose such that no-one has to ever suffer the way you did for decades and have their life stolen from them so brutally. With very heavy hearts, Love from your friends at Inner South Family and Friends

Psychiatric Times 1 June 2021

Lifting a Side Effect’s Heavy Burden

Obesity is problematic for patients’ health, and an all-too-common consequence of antipsychotics. Using these 3 main strategies can help patients achieve physical wellness along with mental health.

You can access more information via the link below:

https://view.email.psychiatrictimes.com/?qs=292f007f61c3c6edbc973f569da3db8e66d2bffc9d89afad23d57bc3ad4360b0cea22e0b738101b47f022c55c5de3ccba472a4c29e1641ea096bf3c96c1efb65bc36dd7db302f89304357dab8f7018d7

Article from The Canberra Times 25 May 2021

Families have been ignored too long in the fight against schizophrenia

Many support organisations that once existed for schizophrenia have vanished, leaving families to carry even more of the burden. Picture: Shutterstock

Many support organisations that once existed for schizophrenia have vanished, leaving families to carry even more of the burden. Picture: Shutterstock

“The attitude of the medical professionals towards me was one of suspicion,” says Monica. “I felt as if I was somehow partly responsible.”

Although the theory was totally discredited by the 1970s, the ghost of the schizophregenic mother still lingers. As late as the 1980s in Australia, according to Melissa, whose sister was diagnosed with schizophrenia, “Mum was always blamed.” And even now, many parents feel guilty when they hear the diagnosis of schizophrenia, believing they must have done something wrong.

“I blame myself all the time for her schizophrenia,” says Cate, mother of 18-year-old Lauren. “I should have paid more attention as she was getting sicker. I should have recognised what was happening.”

We now understand that schizophrenia is not caused by families, as previously theorised. However, it is still families who overwhelmingly carry the burden.

“Every day you are supporting their mental and physical needs,” says Delia, who has a 29 year-old son who was diagnosed at 22. “You become their mental health worker instead of their mum.”

“Families are left holding the can,” says Dr Sebastian Rosenberg of the ANU’s Centre for Mental Health Research. “It’s a case of colossal neglect.”

Although considered a “low-prevalence disorder”, there are approximately 200,000 Australians living with a diagnosis of schizophrenia. If we assume two parents and one sibling for each of those people, that means close to 1 million Australians are impacted. But we hear very little from these families, partly because of the shame and secrecy that remains around the most stigmatised illness of all, and partly because they are rarely consulted.

Even though it is the family who is generally responsible for arranging appointments and overseeing medication, there is often no communication between medical professionals and the carers. This means they are routinely locked out of the decision-making process, rather than being included as a crucial part of the treatment team.

“After years of dealing with the system, I finally learnt that you have to harangue everyone you meet,” says Grace, whose son was diagnosed with schizophrenia at 22 following multiple hospital admissions. “And you have to ask questions. Questions like ‘What medication is he on? Why? What is the dosage? What does it treat?’, and most importantly, ‘When can I have a family meeting?'” It took Grace two years to arrange a family meeting with her son’s psychiatrist.

This is in stark contrast to approaches in other countries. In Finland, a method known as Open Dialogue involves the family with medical professionals from the very first signs of psychosis in a young person. And in India, a tradition of involving families in treatment has led them to serve as “agents of change” in their community, allowing them to identify other people with mental illness and guiding their family to seek treatment.

In Australia, on the other hand, families are often told about the diagnosis without any supplementary information or follow-up. It is left up to them to research this most mystifying illness and make what sense of it they can. “After my brother’s diagnosis I spent the first year researching on the internet,” says Adele, who lives in regional Australia. “My parents, as carers, were given a brochure and that was it. There was no follow-up and zero support services.”

Even in capital cities, family support is scarce.

“I found it difficult to find information relevant to our situation,” says Cate, who lives in Canberra. “The advice I got from family and friends was to seek support from other families in the same situation, but I was never able to find them. It seemed that all the mental health support organisations had vanished or been merged, and there didn’t seem to be anything available that was specifically about schizophrenia.”

READ MORE:

Cate’s impression is right. Support organisations that once existed have indeed vanished. Monica tells of a time when there was strong support for families from the Canberra Schizophrenia Fellowship, which later became the Mental Illness Fellowship. This grassroots organisation, established by a team of parents, offered a help and information phone line, monthly talks and social functions for families. They also created two businesses that provided useful employment to people with serious mental illness: a home maintenance service and a coffee shop called Café Pazzini.

“The people who worked there were happy, felt useful, and were proud of their skills,” Monica recounts. When it closed down, the consequences were tragic.

A drop-in centre called The Rainbow was also a lifeline “that kept many lonely people alive”, according to Monica. This, too, was closed down.

Schizophrenia is not just a medical condition. It’s a social condition. The Rainbow and the Pazzini Café provided fellowship and purpose – essentials for a meaningful life that cannot be provided by medicine or health practitioners.

Families understand this only too well, but despite being the first responders, they are the last to be consulted about priorities for the seriously mentally ill. Those who live with and look after people with schizophrenia on a daily basis can tell us what works and what doesn’t.

It’s time for policymakers to listen.

  • Gabrielle Carey is a non-fiction author known for works such as Puberty Blues. Her most recent book is Only Happiness Here – In Search of Elizabeth von Arnim.
  • This week, May 23 – 29, is Schizophrenia Awareness Week.

Victorian Government Corona Virus Update 2 June 2021

News

 

Why should we wear a face mask?

Science shows that face masks provide an added layer of protection to slow the spread of coronavirus. This added layer is necessary because it’s not always possible to maintain physical distancing.

If you want to know more about face masks – the how, the why and the dos and don’ts? Take look at this article on Why should face masks be worn?

Alfred Health Carer Services COVID-19 update 27 May 2021

Dear Carers,

Alfred Health Carer Services remains open. You can phone us for support and respite.  However, the recent Victorian Government COVID-19 restrictions will change the way we work with you and the person you care for.

Events:

Our on-line events will continue as planned.

No face to face events will go ahead until government restrictions ease.

The following events scheduled from Friday 29 May up to and including Thursday 3 June are CANCELLED.

  • Getaway tour on Friday 28th May
  • Moksha Yoga on Tuesday 1st June
  • Movie at Frankston, Tuesday 1st June
  • Grief and Loss Workshop on Tuesday 1st June
  • Movie at Chadstone on Thursday 3rd June
  • Reconciliation day event on Thursday 3rd June

We will email carers about face to face events planned for after Thursday 3rd June, to advise if these events are able to go ahead.

Respite:

We will continue to make sure respite we arrange is safe by asking health questions about you, your family and the person you care for.

If you have booked respite and you or someone at home is unwell, call us straight away. We need to act to keep you and the community as safe as possible.

We continue to work with respite service providers to ensure that their personal care staff are vigilant about their own and their families’ health.

How to access services:

There are multiple ways you can access services:

Call Alfred Health Carer Services on 1800 51 21 21, Monday to Friday, 8.30am – 5.00pm.

Call Carer Gateway on 1800 422 737, Monday to Friday, 8:00am – 5:00pm or

For an interpreter, call Telephone Interpreter Service on 131 450 to arrange a call to speak with us.

Visit www.carersouth.org.au

Visit www.carergateway.gov.au

For emergency respite and after-hours support call Carer Gateway on 1800 422 737
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