Purple House – life-saving, community-saving, inspirational or all three?

I fact it’s so much more! I wrote about this amazing group of people, led by the fantastic Sarah Brown in August 2017, and she and the House have gone from strength to strength.

But don’t just take my word for it. This astonishing interview on the ABC’s Conversations is just a glimpse of how she has changed the world not just for people on dialysis and their communities, but for all of us.

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Bringing life-saving dialysis to the bush with Sarah Kanowski. Sarah Brown always wanted to be a remote area nurse. Then she began a medical revolution 51mins 25secs, Wed 3 Oct 2018

 

Just a reminder: Western Desert Dialysis reaches 18 communities

18 Communities Strategic Plan

Part of Purple House’s 18 Communities Strategic Plan

 

Purple House Alice Springs

Sarah Brown in front of the purple walls of Western Desert Dialysis in Alice Springs

On dialysis at the Purple House

On dialysis at the Purple House

 

Your chance to make a difference to Renal Care

Make a difference

Community Service Announcement

Provide a Consumer Perspective to Renal Care in Victoria (Australia)

Do you have recent lived experience of kidney disease as a patient, carer or family member? We’re looking for consumers to join our Renal Clinical Network Insight subcommittee.

As a member, you will provide an important voice in strategic planning, support the use of evidence and data, and enhance the quality of kidney disease care across Victoria.

Safer Care Victoria’s Renal Clinical Network is currently looking for two Consumer Representatives to join their Renal Clinical Network Insight subcommittee and to participate in strategic planning to enhance care for patients with kidney disease across Victoria.

Key selection criteria

We are seeking two consumers who:

  • Are enthusiastic and passionate about improving care and experiences for patients with kidney disease and their families across Victoria
  • Have recent lived experience as a patient with kidney disease, or family member of a patient, preferably in both hospital and community settings
  • Are able to focus on how to improve health care for a large population of patients with kidney disease
  • Available to commit to the activities of the subcommittee, including attending face-to-face meetings and electronic communication.

Time commitment

  • Participation in Insight subcommittee meetings, approximately every second month (generally 8.30am-10am Monday mornings, at Safer Care Victoria, 50 Lonsdale Street, Melbourne), as well as preparation and contribution to the subcommittee’s work
  • Involvement in training sessions to support development in the role.

What do I need to know?

  • Applications close Monday 22 October 2018.
  • Applications will be reviewed by a selection committee from Safer Care Victoria.
  • The final review process will involve face-to-face interviews, including an opportunity to clarify any queries
  • Refer to the frequently asked questions on our website.

How to apply

Submit your application to Maree Branagan, Project Lead,  Renal Clinical Network (details below), including a one-page cover letter, addressing your interest and relevant experiences that will help you to contribute to improving care for patients with kidney disease and their families across Victoria.

Contact Details

Maree Branagan
Project Lead
Renal Clinical Network
03 9096 2676
renal.clinicalnetwork@safercare.vic.gov.au

Go for it!

More Information

Community Run Dialysis – Inspirational!

Over the last week, I’ve been working on a new project that involved making a list of all the dialysis units in Australia (more on that soon). In the process, I discovered that all units are either public (free via Medicare) or private (fee charging), except one, which is owned and run by dialysis patients and their families.

Run by patients and families? What the…?

Of course, I had to know more, so I contacted them and discovered firstly that they’ve been around a while and I’m a bit late to this party. But that made finding them even more heartwarming and inspiring.

This community run dialysis service follows a very different model. It is focussed not just on dialysis, but also on the community, on keeping people together. Imagine a place where family and community, culture and country are integral to a happy and fulfilling life. Where people live in small communities, huge distances from large population centres.

Imagine also, that many of these people can, for various reasons, be more than twice as susceptible to kidney failure as the rest of us. And, because their communities are too small to justify individual, government-funded clinics, the only option they have is to leave their community and move to a city where they can dialyse. That is, move permanently from their lifetime home.

KintoreMost are elders or elderly. Their separation hits them hard: they become lonely and isolated and begin to lose the joy of life. Their families and communities miss them; miss their wisdom, guidance, and love. People began to worry about the future of their communities without elders there to provide leadership and pass on cultural knowledge; there was a very real risk of disintegration.

So they drew deep from their community, art, and culture, and changed the game. I’ll let them take up the story:

Determined that renal failure should not be a one-way ticket … away from family, country and everything important, senior men and women created four collaborative paintings.

Orange -bg1000

Kintore Women’s Painting

Browns KintoreMens

Kintore Men’s painting

With the help and support of Papunya Tula Artists (their artist’s community), Sotheby’s Australia and local NT politicians, these were auctioned at the Art Gallery of NSW on the 11th of November 2000, raising over $1 million dollars to set up a dialysis service at Kintore (the first of the tiny remote communities in the Western Desert of the Northern Territory).

Patrick Tjungurrayi

Patient Patrick Tjungurrayi receiving dialysis in Kiwirrkurra with his grandchildren.

Since the commencement of dialysis treatment in Kintore in 2004 we have grown to have dialysis units in 8 remote communities, as well as at the Purple House in Alice Springs. 

Truck and chairThen, in 2011, we created the Purple Truck, our mobile dialysis unit, to give patients the opportunity to spend time in their home communities where there is not a permanent dialysis unit, where they can to reconnect and recharge.

Janie Miama at Docker River

Patient Janie Miama receiving dialysis in Docker River

In 2003, they incorporated as Western Desert Nganampa Walytja Palyantjaku Tjutaku Aboriginal Corporation (Western Desert Dialysis). The name means ‘Making all our families well’ and it recognises that people must be able to stay on country, to look after and be looked after by their families.

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Western Desert Dialysis CEO Sarah Brown with her award

And success breeds success. As they have grown, they’ve attracted other talented people, like their Chief Executive, nurse Sarah Brown, who was voted Australia’s top nurse for 2017.

And organisations like Medicines Australia, Papunya Tula Artists and Fresenius Medical Care, whose generosity and support helped start and run the Purple Truck.

Governanmce AwardThere’s more. In November 2016, Western Desert Dialysis won the 2016 Reconciliation Australia/BHP Billiton Sustainable Communities Indigenous Governance Awards, Category A Award for incorporated organisations. Professor Mick Dodson, said: “It’s their humanity that stands out in their governance. They’re a family that really cares for every member in the way they deliver services. Aboriginal culture has been wrapped around access to modern medicine and allows it to be administered in a holistic and culturally appropriate way. They’ve … got the administrative nuts and bolts of good governance and are taking innovative approaches to community leadership.”

Take a bow, Western Dialysis Directors.

Still more: Over the last couple of years, they have developed some great education resources for dialysis patients, including this video (in 3 local languages as well as English). It’s excellent. Simple, easy to understand and educational for anyone on dialysis. Check it out!

How great is all this? So many good messages. Beginning with the amazing power of art to influence and change lives.

And smart, inspired people taking responsibility for their own health and well-being to deliver dialysis the way they most need it.

Sounds like yet another example of the ePatient movement, not just sitting back and hoping.

There is a lot more to their story: Check out their beautiful website (showing some of the fabulous artwork) and subscribe to their mailing list. I have a feeling there’s a lot more excitement to come.