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“Just Invisible”: Medical access issues for homebound/bedridden persons

A report by Ricky Buchanan  

Ricky Buchanan is a 43 year old Melbourne woman who’s been disabled since her teenaged years and bedridden since her early twenties.

She lives with Ehlers-Danlos Syndrome , Dysautonomia, Mast Cell Activation Disorder  and Chronic Fatigue Syndrome.

The end result of these conditions is that she is bedridden. She lies flat on her back all day and has a computer system set up to use while lying flat. She listens to audiobooks and podcasts and stays connected via Facebook and Twitter. She writes articles and blog posts when there’s patch of the day with some energy.

She says “I have been meaning to construct a document like this for many years. Unlike many people who are homebound/bedridden, I do not have a condition which seriously impairs my thinking or communication, and I have been bedridden for decades now, so I am excellently placed to document these failures of the medical system.” Read her report above!

Looking for help  and advice about arthritis and other musculoskeletal conditions?

MSK Help Line – 1800 263 265

Supporting people living with musculoskeletal conditions. Our free national Help Line provides information and support to people living with MSK conditions (such as arthritis, fibromyalgia, back pain and osteoporosis), their families and health professionals.

Staffed by specialist nurses and trained volunteers the Help Line can:

  • Provide information on MSK conditions, treatments, medications and pain management
  • Help people in navigating the health, disability and social service systems
  • Assist in locating services within people’s local area
  • Link people to peer support groups.

Contact the MSK Help line on 1800 263 265 Monday to Friday 9am-5pm or email helpline@move.org.au.

The MSK Help Line is supported by MOVE muscle, bone and joint health a not-for-profit, consumer organisation supporting people living with MSK conditions move.org.au.

How the PBS works

 

Dr Tim Woodruff supports the basic income guarantee (BIG) to end the demeaning welfare system that punishes people when illness means they are unable to work. Read about it here!

Check out the stunning work of the Melbourne Genomics Health Alliance Community Advisory Group presented at the International Safety and Quality in Health Conference  London 2017

CAG IsQuA 2017 poster 04.09.2017

NPS Medicinewise is supporting the global campaign on antibiotic awareness. The toolkit is available here!

New Version in 2016! Best Practice Framework In Peer Support

Our new evaluation tool in peer support.

This new tool is set up to let you survey your support group members and the way your group functions.  It will work with all groups, whether face to face or online. You will receive a score and see the areas where your group does well or where it can make improvements.  Click here to try it out!

Ageing Well: Maintaining health as we age

This on-line course allows you to assess your healthy activities and find relevant resources if you need them.

Peer Support

 

Chronic Illness Alliance Peer Supporters’ Network

The Peer Supporters’ Network (PSN) is a forum for people who work in peer support to share information and knowledge, network, support each other, and strengthen peer support programs.

The network is made up of a broad cross-section of organisations across Victoria who support people with a primary diagnosis of a chronic health condition, and aims to raise awareness amongst health professionals in Victoria about appropriate peer support groups and pathways to access them.

The PSN meets four times a year covering a range of topics including guest speakers on peer support programs, current research, and workshops on various issues encountered in peer support programs. for more information contact denise@chronicillness.org.au