“What’s new at the Network”, this month

Welcome - PHNA eNews Edition 1 September 2018

Hello & the first words from the CEO
Hello PHamily, we are so excited to share our inaugural September 2018 eNewsletter with you! Each month we will be bringing you all the latest with our usual quirky and colourful flair.
To start us off I would like to share a great quote with you. 

"The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love, and to be greater than our suffering". Ben Okri
Where has 2018 gone, it’s been a blur with lots of activity both for Team PHabulous at PHNA, and for the many other organisations within our Network. As a "Network" we are constantly building on the resources, information, contacts, and anything we think will help you to live better lives, both physically and emotionally with your pulmonary hypertension.  Part of the VISION for our organisation is that 80% of our team members ideally should have a "lived experience" with a chronic illness, or disability. This starts with me as the founder, and CEO of our organisation, as a person who lives with Idiopathic Pulmonary Hypertension, and celebrate nine years as a long term survivor.

We have been building on our foundation this year in order to transition from a support group, to an incorporated nationally registered charity and association for Australia.  It's an exciting period of growth for our organisation. It takes time to build a good foundation, and we have many wonderful people who have joined our team, and are helping to make this vision a reality.  We will continue to build capacity and sustainability into the future for the pulmonary hypertension community in Australia.

We hope you enjoy our monthly offering to the Pulmonary Hypertension Community in Australia and beyond. Please let us know if you have any feedback, or input you’d like to share with our PHamily, we are very inclusive, and welcome input from everyone.

Be kind to one another, Melissa Dumitru & Team PHabulous

PHNA 2018 Superhero Awards

This initiative is proudly supported by our Junior Ambassador Tyler Wilding,  and the Lion's Club of Whitford WA. Nominate from the categories below, for a person/group or organisation who has contributed to furthering the cause in Australia in the field of Pulmonary Hypertension. Finalists will be announced in October, so get in quickly!

Choose from these categories:
  • Person living with pulmonary hypertension
  • Person caring for someone with pulmonary hypertension
  • Health professional (nurse, doctor, physio)
  • Organisation, support group 

Community Support Group Special Event & News

At PHNA it's always been about support first! Please remember to attend your local support groups so you can actually have some face to face time with others, who will understand the many challenges you face from day to day. You can help people who have been newly diagnosed by sharing your knowledge, and experience, and spending some quality time together.

Support groups are amazing places filled with some extraordinary people from really interesting backgrounds. It's never boring, always welcoming, and we need, and appreciate your support of the National Support Group Networks, in each state, under both the PHNA and the Lung Foundation Australia banners. We hope to see you soon. 

For more information please contact PHNA, or the Lung Foundation Australia to find out more about the network of support groups around Australia.

Breaking News

ConnectGroups Association is proud to inform its members and supporters that funding has been secured to set up a Community Information Link Booth at the entrance of Fiona Stanley Hospital in Perth WA.

It has been a long term aspiration for the organisation to enable patients, carers, family and friends to engage with existing community services at the discharge point. It wishes to thank Lotterywest for sharing in the vision; Fiona Stanley Hospital for its participation and pro-bono support, and Pip Brennan from the Health Consumers Council. Click  for full media coverage.
ConnectGroups team members Fiona Hughes, left, (volunteer) Linda Duffy,
Amanda Muir, (volunteer) Fay Bahemia and Juanaili Hultzsch. 

On Wednesday 29 August 2018 The Hon. Roger Cook officially presented ConnectGroups with a Lotterywest cheque for $116,580 that will fund its Community Link Booth which is set to launch at Fiona Stanley Hospital in October. 

The booth is a collaborative initiative by ConnectGroups and the Health Consumers' Council - WA, and a result of an identified need to reduce the high rate of preventable hospitalisations in Western Australia.

Thank you to all who attended this presentation; it's a significant achievement for ConnectGroups, and for the Support Group sector. Members of the CG Board of Management were in attendance including Chair Pearl Proud (top left in red), Dorothy Jones, and Patron Professor Lyn Beasley. 

As a member of the ConnectGroups Association's Consultative Committee, I was in attendance for this special event. Our organisation is very supportive of all the work and support this team offers to those in the sector, which enables us to then provide for our memberships. 

Community Spotlight 

 Our team members at PHNA are constantly attending education, training & workshops to stay up-to-date with anything we feel will benefit our PH community. We have been involved in several workshops and consultative processes this year.

PHNA had the great pleasure of being one of the guest speakers for the Lung Foundation Australia's education seminar in Perth WA, in May this year, which was a real thrill. We had the opportunity to launch our new LifeStyle series with a PowerPoint presentation and  a 'lived experience' talk from CEO Melissa Dumitru. It was so wonderful to share this experience with the audience, and raise awareness about our disease, and network with the people in attendance. 

You can find this LIVE recording on our Website, and the Lung Foundation Australia Website. 
The Digital Patient Experiences Project from ConnectGroups Association invited members from various support groups, and organisations to participate in an intimate and personal approach to sharing information about how being a member of a support group benefits us.  It was also an opportunity for me to share some of the challenges of organising, and facilitating a support group.  PHNA member Maree Bouwer, and CEO PHNA Melissa Dumitru were thrilled to participate in this special project earlier this year. Earlier this month we attended the premier of the finished films for a private screening with all the people involved. These beautifully directed and produced short films highlighted so many incredible stories from very brave individuals.  Some of the stories came from Transfolk, and grandparents raising grandchildren, and highlighted their individual journey through adversity.  Issues such as dealing with a chronic terminal illnesses, loss of a loved one, and suicide were discussed. There was laughter and tears, popcorn and hot-dogs throughout the evenings festivities. We were so honored to be part of this project, and we look forward to sharing them with you very soon. 
On Monday 6 August 2018 ConnectGroups hosted its Digital Stories Premiere, showcasing nine short films that capture the stories of Support Group members and demonstrate the benefit of peer support.

Those who featured in the films were invited to attend the private screening, held at the ConnectGroups office, and the viewing was a moving and inspirational experience for all who attended. ConnectGroups would like to thank the following Support Group members for sharing their stories:

Abbey Thomson from Endometriosis Perth Sisterhood of Support
Alyssia Jodie from Transfolk of WA
Emery Wishart from Transfolk of WA
Jan Standen from Grandparents Rearing Grandchildren WA
Katlyn O'Rourke from SANDS WA
Maree Bouwer from Pulmonary Hypertension Network Australia
Melissa Dumitru from Pulmonary Hypertension Network Australia
Penny Rowden from Grandparents Rearing Grandchildren WA
Sandra Oram from H.O.P.E.S

Stay tuned for the official release of the Digital Stories!
Recovery College WA Two of our team members were invited to attend this consultative workshop, hosted through ConnectGroups Association on behalf of the Mental Health Commission WA. These colleges are specialised in their approach to catering to people with disabilities, both physical and psychology. You can find these colleges all around the globe, and we are fortunate enough to have one proposed for Western Australia. In the spirit of collaboration and co-design, people from within the support group sector in WA were invited to contribute, and share their lived experiences, and unique perspectives. It was really exciting discussing the type of campus environment that could potentially come to fruition. The steering committee were left with a lot of amazing ideas and valuable information. We hope to share more as this project evolves. 
Workshop "Co-Design & Facilitation" ConnectGroups Association the Peak Body for Support Groups, hosted this exciting workshop to discuss a future Support Group Model proposal. People from many different organisations, backgrounds, and cultures attended this important occasion, and contributed their unique experience, and perspectives.  It is integral to the support group sector, with its thousands of members who are all living with a multitude of challenges, that they be represented. Through information sharing, education, training, networking, and advocacy it can assist people to maintain their health and well being, and thus reduce the strain on an already busy health care system. 

The 2nd Pulmonary Hypertension WEBINAR for 2018

The 2nd Pulmonary Hypertension WEBINAR for 2018 was hosted by the Lung Foundation Australia on:  Wednesday 8th August. 

The topic was: Exercise and Pulmonary Hypertension Guest Speakers: Helen Seale Clinical Consultant Physiotherapist from the Prince Charles Hospital, and Shauna Watt a person living with Idiopathic pulmonary arterial hypertension shared her exercise tips with the audience.

PHNA participated in this webinar which was really interesting. Helen Seals presentation was comprehensive and easy enough to follow along with. It raised many good points about things that many of us may not be aware of, or needed a refresher about.

This session will be available in the coming weeks and we will share that with you soon. In the meantime we hope you enjoy the first webinar hosted in May for World PH Day and Lung Awareness Month 2018. Their final webinar for 2018 will be in November for Pulmonary Hypertension Awareness Month. 

CLICK to watch previous Webinars.

My Health Record - It's Here!

Important Information for all PHNA Members & Network Partners

All Australians should consider the benefits and risks of My Health Record in the context of their own lives before making their decision.

To help consumers make an informed and considered decision about whether or not to opt-out of having a record created for them, the Consumers Health Forum of Australia are holding a series of 6 webinars starting in mid-August that cover the key information people need to understand about the benefits and risks of My Health Record. The webinars will include knowledgeable panelists and provide a chance for consumer questions to be asked of them.

Summaries and other 'bite-size' content based on the information covered will also be released after the webinars. Each webinar will focus on a different area of important information or decision that a person has to make in order to arrive at an informed decision.

Click here to access the webinars. Click here to access site directly.

World PH Day Celebrations 

Proudly supported by:
We had a Superhero themed quiz night, hosted by the Lion's Club of Whitfords.

PHNA were joined by the Heart Lung Transplant Foundation WA and the Organ Donation Transplant Foundation WA, for an evening of fun and frivolity, games, auctions, raffles, food and drinks, which was enjoyed by all. 

We hosted the 60 second straw test challenge. This challenge always has a strong reaction from people as they think breathing through a straw with their nose held closed for 60 seconds, will be easy!  THINK AGAIN and then imagine living this way....

During the event we were LIVE with, based in the USA who hosted a podcast that spanned over 80 countries, at various events. It was so exciting to be a part of this initiative.


The Respiratory System - Revision

Recently PHNA had the pleasure of meeting the independent support group for people suffering from asthma, pulmonary hypertension, emphysema and other respiratory disorders called the Nepean Puffers and Wheezers. They are proudly affiliated to the Lung Foundation Australia through Lungnet. 

Their President, John Ruttle, was introduced to us over a teleconference hosted by the Lung Foundation Australia for all support group facilitators in the country. We really enjoyed hearing all about John's group and their work with the lung community.

We have enjoyed sharing information, newsletters and contact details between our groups and we have permission to share an article from their newsletter, "The Inhaler", called The Respiratory System Revision. If you would like to connect with John and the Nepean Puffers please contact them HERE.

Host a Stall at Support Groups Awareness Day

Visit the National Awareness Day website

Carer Support & Services

Take advantage of thier
Online Newsletter
Join a Carers Support Group 
Attend information seminars
Member discounts

You can not only take advantage of the many services available to Carers in Australia but also learn about your Carers rights. They will send you an information pack filled with valuable resources and links to services that may help you in your journey. 

Carers are very valuable to everyone, so please take care of yourself and invest in this membership today. Call 1800 242 636 or directly to their website for an Association in your state.
Subscribe to Carers Australia

Mental Health Moment

Mental Health Moment: Why Getting Motivated is Hard

An article recently published on the ABC discussed why it is difficult for so many of us to maintain motivation to reach a goal. Why does enthusiasm wane so often before goals have been reached?

The article’s author suggests that it is a combination of:
(1)  Instant gratification
(2) The risk of focusing on the big goal instead of the milestones toward it
(3) Deciding whether it is worth the effort.
An easier way to explain this combination is intrinsic motivation versus extrinsic motivation.
Intrinsic motivation (internal) is when you are driven to do something purely because you find it enjoyable, finding meaning and pleasure in the pursuit; it doesn't matter if there is a reward at the end, you choose to do it, rather doing it of out of obligation.

Extrinsic motivation (external), on the other hand, is when you are driven to do an activity because you're avoiding pain or punishment, you're doing it for someone else, or feel like it is being forced on you. Extrinsic motivation may get you started toward a goal, but it won't keep you there for long.

So how can you shift your thinking so that you are more intrinsically motivated to achieve a goal?  There is no magic bullet but if you are prepared to be mindful about the process, it can be done.

Find a pen and paper, and answer these questions:
Q1: What is most important to me in my life right now?
Q2: How does [insert goal you want to achieve] align with that?
Q3: How will [doing the work required to achieve it] help me reach other goals in life?
Then pay attention to these simple, yet important things:

  • Are you sleeping well?
  • Do you have enough time to yourself?
  • How often do you do something for yourself, even if it's small?
  • What are your energy levels like?

Whatever answers you come up with, they must come from you and not be influenced by external factors, like other people or expectations.
Then ask yourself, is the effort worth the reward?
To read the full article, click on this link. (This article was shared with you from ConnectGroups August Sector News 2018).

Recipe of the month from the PHNA Kitchen

Phyllo-Wrapped Salmon with Spinach & Feta - Click for full recipe

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