Just The Mother Slides

Just The Mother Script

Organisation: Independent

This presentation recounts my journey as the Carer for my son, who in 1997, received a diagnosis of paranoid schizophrenia.  The significant recovery I have experienced in the last 4 years is, in part, due to my acceptance that I needed to investigate my own trauma to find a comfortable context in which we could live together.  The presentation ends with a message to other Carers outlining truths I wish I had been told.

Central is an awareness that when a diagnosis of a mental illness is made, there is an individual who will care about the unwell person, above all others.  They may not assume the title of Carer, but the unwell person needs them.

As a Carer I was untrained in personal advocacy skills, constrained by a lack of knowledge of my rights in asking for help, and confused about where I could find guidance for us.  The need to maintain the privacy of the unwell person and the overwhelming panic I felt to “fix it” was for me, the cause of much stress and anxiety.  As there was also resistance to medication and outreach services, I could not rely on the limited use of cajoling and insisting as tools when encouraging the unwell person to access help from mental health services.

This presentation offers two objectives, both of which are the basis of my need to speak as an LE Speaker.  The first is to gain support in assessing the need to develop a personal advocacy course suitable for MH Carers, and the second is to encourage other Carers to find a way to speak up.

Leveraging lived experience of psychosis and recovery for better outcomes

Organisation: Independent

This presentation addresses how lived experience can be employed to support better outcomes for individuals living with psychosis by inspiring hope, reducing stigma, increasing enhancing self-efficacy and increasing help-seeking behaviour.

Central to this topic is the issue of self-disclosure of psychosis and its assorted challenges.  Initiatives such as the Honest, Open, Proud Program; Ending Self-Stigma; Peer Zone and the model used by Mental Illness Education ACT in Canberra schools will be addressed, including related research.

A theoretical framework – relying upon the work of Albert Bandura, Patrick Corrigan and others – will be provided to advocate for the development of a more financially stable and effective peer workforce in Australia for better outcomes for people who experience psychosis.  Specifically, a workforce that includes an adequate number of peer workers with lived experience of psychosis.

Finally, opportunities for potential interventions at scale, to leverage lived experience of psychosis which do not require face-to-face contact, will also be proposed; strategic interventions relying upon mainstream media and social media.

Impact of mental illness on the patient journey while waiting for kidney transplant: an Australian data-linkage study.

Co-Authors: Sara G, Glozier N, Miranda JJ, Wyld M, Webster AC

Organisation: The University of Sydney

Kidney disease is six times more common in people living with severe mental illness.  Kidney transplantation remains the ideal treatment for kidney failure.  However, people with mental illness are often disadvantaged in healthcare.

We compared transplant waitlist journeys (including suspensions and re-listing) and outcomes for NSW mental health service users compared to others.  We used ASSET-NSW, a data-linkage study between Mental Health Living Longer (MHLL) and Australian and New Zealand Dialysis and Transplant (ANZDATA) registry.  We included all people waitlisted for their first kidney transplant in NSW (2006-2020), identifying people with prior mental health care in public/private hospitals or community mental health services.  We used multi-state modelling to compare waitlist suspensions, return to waitlist, death while waiting and transplantation between mental health service users and other residents, using cause-specific Cox models.

Of 2,739 people entering the kidney waitlist, 621 (23%) had received prior mental health care.  After 2 years since entering the waitlist, 31% of mental health service users and 27% other NSW residents were currently suspended, and 19% and 31%, respectively, were currently active on waitlist.  At any given time, mental health service users were 26% (HR:1.26, 95%CI:1.14-1.39;p<0.001) more likely to be suspended than other NSW residents after adjusting for clinical factors.  However, mental health service users had the same likelihood of returning to the waitlist (HR:0.91, 95%CI:0.80-1.03;p=0.12), death while waiting (HR:0.98, 95%CI:0.78-1.22;p=0.85) and being transplanted (HR:0.90, 95%CI:0.80-1.02;p=0.10). Subgroup analyses by severity will also be presented. NSW mental health service users had more frequent suspensions from the kidney waitlist but similar waiting time until transplantation. There is opportunity for more collaborative psychiatric and transplant services to promote better patient journey.

Electronic shared-care with mental health services, consumers and GOs: research and implementation challenges during the pandemic.

Co-Authors: Simpson A, Li S, Harris MF, Taggert J, Searle K, Jun S, Lopez Portillo B, McDonald A, Baillie A, Harris-Roxas B, Cunich M, Parcsi L.

Organisation: Centre for Primary Health Care & Equity, Faculty of Medicine and Health, UNSW Sydney

Effective communication between healthcare providers is essential for improving the wellbeing of people experiencing severe and enduring mental illness.  The SHAReD Study is a pragmatic randomised controlled trial of an online shared-care tool that aims to enhance care planning and communication between mental health services (MHSs), general practitioners (GPs), and their shared consumers within the Sydney Local Health District (SLHD).  The study aimed to recruit 500 consumers and their GPs.

This presentation describes the multiple barriers to recruitment and intervention implementation experienced during a pandemic. Methods included an experience diary and structured qualitative reflections from the study research team and clinicians involved in the trial.  Only 53 consumes and their GPs could be recruited, despite multiple changes to the recruitment strategy. Implementation of shared care was also difficult.

During and since the COVID pandemic, MHSs and general practices faced significant capacity challenges that limited their ability to engage.  Additionally, many GPs were reluctant to introduce external software for multiple reasons including privacy concerns.  Barriers for consumer engagement included pre-existing mistrust with the healthcare system and lack of a regular GP. 

The barriers reported here illustrate the challenges and complexities of implementing shared care in the mental health sector.  They also highlight the impact of COVID-19 on MHSs and GPs, which can affect the care that consumers receive and the feasibility of implementation trials.  Greater funding and/or longer timelines for trials involving people who live with severe mental illness and health service providers experiencing substantial capacity issues need to be urgently recognised by healthcare administrators and research funders.

The impact of a co-designed wellbeing goal planning process between community pharmacists and consumers living with severe and persistent
mental illnesses.

Co-Authors: Sara S McMillan, Jie Hu, Jack C Collins, Sarira El-Den, Ricki Ng, Claire L O’Reilly, Amanda J Wheeler

Organisation: Griffith University, University of Sydney

People experiencing severe and persistent mental illnesses (SPMIs) have high levels of co-occurring health conditions, which often go unrecognised and untreated.  Given that medications are commonly used to manage SPMIs, community pharmacists are well-placed to identify, address, and monitor this vulnerable population’s health and wellbeing needs.

The Bridging the Gap between Physical and Mental Illness in Community Pharmacy (PharMIbridge) Randomised Controlled Trial (RCT) intervention was designed to address key healthcare gaps for this population.  A collaborative, and goal-directed intervention was provided within Australian community pharmacies (n=25).  Trained pharmacists (n=55) holistically reviewed consumers’ (n=156) health concerns, co-designed interventions to address these targeted areas, shared this information with their other treating practitioners, and checked in/followed up with consumers for six months.

At RCT completion, interviews with pharmacists (n=16) and consumers (n=26) explored their experiences of the PharMIbridge intervention and perceptions of acceptability.  Interviews were completed between May 2021 and May 2022, transcribed and thematically analysed.

Overall, participants reported positive intervention experiences, with consumers identifying improved physical health, increased social connectedness, a sense of accomplishment, and motivation to continue working towards healthy behaviour change.  Pharmacists described an increased understanding of the lived experience of SPMIs, an awareness of the “story behind the prescription” and improved confidence in supporting this population.  Developing trusting and supportive relationships was seen as an important outcome, and pharmacists reported increased awareness of, and referral to, local resources to support consumer wellbeing.  Participants suggested that the PharMIbridge intervention should be implemented as a community pharmacist-led service to support the health and wellbeing of people experiencing SPMIs.  This RCT received grant funding from the Australian Government Department of Health and Aged Care. Registration: ACTRN12620000577910.

Multivariate brain structure-cognition signatures of early psychosis

Co-Authors: Christos Pantelis, Cassandra Wannan, Warda Syeda

Organisation: Melbourne Neuropsychiatry Centre

The relationship between widespread grey matter (GM) and white matter (WM) alterations and their association with cognitive impairment in recent-onset psychosis (ROP) patients are unclear. Using a novel, multiblock partial least squares correlation (MB-PLS-C) analysis, we examined GM-WM relationships and assessed their relationship with cognitive abilities in ROP patients.

We hypothesised that MB-PLS-C would show differential GM-WM patterns between patients and controls, correlated with disease-specific cognitive abilities.

Using T1 and diffusion-weighted MRI scans of 71 nonaffective ROP patients (age 22.1±3.2) and 71 healthy controls (age 22.1±3.1), we performed MB-PLS-C analyses between GM and WM variables to identify GM-WM patterns and analysed their correlations with cognitive functions.

MB-PLS-C between GM thickness and fractional anisotropy (FA) demonstrated HC-specific and ROP-specific patterns, explaining 16.92% and 12.38% of the total covariance.  The ROP-specific pattern was strongly linked to the frontal and temporal regions and WM tracts, including the anterior limb of internal capsule.  MB-PLS-C between GM surface area and FA exhibited shared and differential patterns between groups, explaining 53.21% and 18.97% covariance.  The differential pattern was significantly associated with the frontal, cingulate, and parietal regions and WM tracts, including the inferior cerebellar peduncle.  The thickness-FA ROP-specific pattern was associated with processing speed, working memory, and episodic memory, while the surface area-FA differential pattern was related to reading abilities.  Tractography demonstrated that a differential pattern between surface area and FA was underpinned by significantly high GM-WM connectivity, whilst a patient-specific pattern between thickness and FA was not based on substantial GM-WM connectivity.

MB-PLS-C demonstrated patient-specific or differential GM-WM patterns, indicating a potential signature of brain alterations in early schizophrenia. Furthermore, we identified cognitive abilities significantly related to the signature patterns.

Lived Experience Leadership Codesigned Bipolar Disorder Psychosocial Recovery Supports.

Co-Authors: Portelli, D. Dr., Bluwol, S., Smith, M. Dr., OAM,

Organisation: Bipolar Australia

People living with Bipolar mood disorder experience psychotic episodes during manic and depressive episodes which usually require hospitalization and a diagnosis of bipolar disorder is made.  However, there is often a long period of episodes of less severe mood disorder before people get access to effective treatment to prevent and treat episodes of mood disorder and foster recovery.  

While prophylactic medications, antipsychotic and antidepressant drugs are the main treatments for treatment of episodes of serious mood disorder, there remain large gaps in psychosocial support, information about self-management and psychological strategies for recovery from episodes of serious mood disorder.

Bipolar Australia was formed as a lived experience led community organisation to raise awareness about the available treatments for Bipolar mood disorder and to inform and educate people living with mood disorders, their families and friends and health workforce about treatments, services and research currently available.

Bipolar Australia has partnered with the Bipolar Hub at Western Sydney University to develop codesigned evidence-based psychosocial resources for people living with Bipolar mood disorder and their families, friends and kin carers.

This presentation will discuss emerging themes from the work of Bipolar Australia from qualitative research findings about the effectiveness to support recovery in managing episodes of Bipolar mood disorder and the aftermath of psychotic episodes during mania and depression provided by codesigned psychosocial supports, online courses, support groups and peer support.