Photos of people with lived experience of mental illness who have shared their stories with the Commission
29 June 2017

The Mental Health Commission of NSW is marking five years of operation in July 2017. Here, we look back at some of the Commission's achievements. 

The Goal: People with lived experience of mental illness, and their families and carers, are at the centre of every change the Commission is making, and their knowledge and experience is invaluable in guiding our way forward. We make sure people’s voices, concerns and ideas are heard, not only in the public domain but in every arena where decisions are being made.  A growing body of evidence shows that services designed in collaboration with those who use them are more effective. That’s a model we would like to see a lot more of in the future.

What the Commission has done:

  • We consulted more than 800 consumers and carers during the development of Living Well: A Strategic Plan for Mental Health in NSW 2014-2024, to ensure their experiences and needs are at the heart of all changes to the NSW mental health system.
  • We ask consumers and carers about their experiences of the NSW mental health system and whether they are seeing difference following the Living Well reforms.. More than 58% of respondents to our 2016 Evidence of change survey identified as consumers or carers, and their input is central to our analysis and reporting.
  • We gathered more than 160 submissions from consumers and carers about their experiences of medications for mental illness and published these in a paper and series of short films. Personal experiences of medication use carry the same weight in these materials as those of health professionals and researchers, and highlight both good practice and things that needed to change to promote safety and focus on recovery. Based on consumer input, we also created a postcard-size discussion guide about medication that people can take to their doctor or pharmacist and that has been distributed to more than 2000 pharmacies and neighbourhood centres across NSW. Through this project the consumer and carer voice is heard in settings like the Health Education and Training Institute (HETI), which now uses the medication project resources when training NSW Health staff.  
  • We funded research with more than 100 Australians who had experienced an eating disorder about what helped and hindered their recovery, and had their advice turned into a resource for health professionals. The resource, called Insights in Recovery: A consumer-informed guide for health practitioners working with people with eating disorders, was released in November 2016 and has been downloaded more than 1500 times. It identifies for health professionals eight key things they can do to support people to recover, such as discuss with clients what recovery entails and help them to feel safe. A direct mail campaign to GPs is underway. 
  • The Commission believes people with experience of mental health issues have a unique ability to help others who are unwell, and are vital in NSW’s mental health workforce. We have supported the growth of peer worker numbers via a number of initiatives including our Peer Work Hub. Launched in 2016, this website provides evidence and advice to employers on how they can introduce or grow a peer workforce, overcoming misconceptions and barriers. The Hub has had more than 3500 users since its launch. The growing support for peer work was demonstrated when the Ministry of Health appointed its first ever Peer Workforce Coordinator in 2016.
  • We established a Consumer Lived Experience Steering Group in 2016 and asked its members to develop a priority project that they thought would make the greatest positive impact. Supported by the Commission, participants consulted with 150 fellow consumers around NSW and the resulting project - a guide for government and community agencies on how to foster meaningful consumer and carer participation, influence and leadership - is in development. 
  • In order to highlight the ways that mental health carers and families can shape reform, the Commission established a Carer Lived Experience Project Steering Group in 2017. Supported by the Commission, the group is exploring the topic of carer participation, influence and leadership in order to inform the abovementioned guide for government and community agencies on how to foster meaningful consumer and carer participation, influence and leadership. 
  • When the Commission undertakes community visits, one of the most important groups we seek out are those who have actually used the mental health services and resources in that area. This is an irreplaceable window into the realities – good, bad or indifferent – of how the mental health system is working. Towns we have visited include Bega, Blue Mountains, Broken Hill, Coffs Harbour, Goulburn, Grafton, Griffith, Kempsey, Orange, Queanbeyan and Wagga Wagga.
  • We shine the light on personal experiences of mental illness through the stories we include in our videos, publications, website and other communications. We ensure that clinicians, government agencies, organisations, and networks that treat and care for people with mental health issues hear those written and filmed stories, so that the people behind them  are always front of mindWe have captured and promoted more than 40 personal stories so far. 

How it’s helping to create a better mental health system: A mental health system in which consumer and carer voices are sought, listened to and respected will be more accessible, more accountable and more effective at helping people along their recovery journey.


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Last updated: 27 July 2017