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PHNA eNewsletter Edition 4 - January 2019

“What’s new at the Network?”, this month
Welcome & first words from the CEO

Hello PHamily, welcome to a brand new year! I hope everyone enjoyed a peaceful and happy festive season.

Our heartfelt sympathy goes out to all those in our community who have lost a loved one, are struggling with their PH, or have been or are in hospital. 

I'm sure that there are many of us who are still moving a little more slowly into the new working year than we might like. 
At this time of year we are all busy planning for future projects and initiatives we want to achieve throughout 2019.  Naturally, living with pulmonary hypertension means I move a little slower anyway! But, it doesn't dampen my enthusiasm for the new calendar years events.  

In 2019 we will be commencing, and continuing projects and initiatives in multiple areas, and we look forward to interacting with you more and receiving your valuable input and feedback. There are many exciting, new, and interesting things ahead for our community. Here's to a great new year for everyone.

Take care until next month, be kind to one another, Melissa Dumitru and Team PHabulous. 
 
 

PVRI World Congress - Barcelona 2019

PHNA are very pleased to announce that we have once again been invited to attend the world congress hosted by the Pulmonary Vascular Research Institute UK, in Barcelona at the end of January this year. Our President Rom Dumitru will attending once again, accompanied by our new Ambassador Tegan Dunmall. Tegan is living with pulmonary hypertension and is also a Clinical Nurse Specialist in Melbourne. Our team are excited  that when we submitted her poster for inclusion in the scientific poster presentations, that it was accepted. We are pleased to announce that Actelion Pharmaceuticals have funded our attendance to this years event. We look forward to sharing all the news and pictures very soon. We thank the PVRI for endorsing PHNA and sharing our quarterly magazine. 

Support Group Gathering Dates 2019 

To register for our support group gatherings in WA please click for more information.
The Lung Foundation has a database of national support groups across Australia for you to access. We encourage you to get involved and seek the valuable support needed to assist you in living well with your chronic serious disease. Both LFA and PHNA can assist you to start up your own support group, and provide resources to existing groups specific to PH. Contact the LFA today! In WA we are very fortunate to have the "Lung Leaders Network" Coordinated by LIFE Support Group, and supported by the Institute of Respiratory Health. For more information about these groups please click.

Community Spotlight 

Paying it Forward to our amazing sponsor the Lions Club of Whitford in December were CEO Melissa Dumitru and Coordinator Education & Development Helen Blanchard. We joined a roster of volunteers during the month of December as part of the gift wrapping station at Whitfords Westfield Shopping Centre in WA. 

We spent our shift spreading some festive cheer while wrapping gifts for the community for a gold coin donation. We were very excited to be able to assist this team of amazing Lion's members for a change, and have some fun doing it too!

The updated "Invisible Diseases" car dash decal

Anyone with Pulmonary Hypertension who has parked in the Acrod disabled bay will know that at some point they may be challenged about "not looking disabled enough" to use it. I speak from personal experience when I say this, as horrifying as it is, it does happen more often than you may think.

In 2016 with an educational grant "Pay it Forward", from ConnectGroups Association and the Mental Health Commission WA, PHNA launched its "Invisible Diseases" initiatives. We include this car dash A5 laminated card decal in every resource pack we send to someone living with pulmonary hypertension. The reverse side displays information about pulmonary hypertension.

We have found over the years that there are so many others in our communities who live with chronic conditions that also can often look "invisible" to others. It's so wonderful to see everyone uniting in the PHight against invisible diseases. For your decal please contact us today. We change our designs yearly and we love your input. 

For our Medical and Health Professionals

PHA USA Publishes New Online CME Courses for Health Care Professionals

The Pulmonary Hypertension Association (PHA) recently published three new courses on PHA Online University, a program of PHA’s multi-sponsored Medical Education Fund and the go-to web platform for health care professionals to acquire relevant and reliable information about pulmonary hypertension (PH). The courses are part of the “Pulmonary Hypertension: The Basics” curriculum series to educate PH-treating health care professionals on the fundamentals of PH, including the diagnosis, treatment and management of the disease. The courses are:

Additionally, PHA recently published “Health Disparities in Patients with PAH Roundtable,” a filmed discussion with Evan Brittain, M.D.; Vinicio A. de Jesus Perez, M.D., FCCP, FAHA; Tim Lahm, M.D; and Arunabh Talwar, M.D., that explores published literature about health disparities in individuals with pulmonary arterial hypertension and how researchers are measuring the impact on diagnosis and treatment. This course also is available on PHA Online University.

These online continuing medical education (CME) courses offer a total of up to 3.5 AMA PRA Category 1 CreditsTMHealth care professionals can take advantage of these courses and complimentary CME courses by logging in or creating an account at www.PHAOnlineUniv.org.

Community Link Booth at Fiona Stanley Hospital

We are so pleased to announce that the new Community Link Booth at Fiona Stanley Hospital is now up and running!

Do you enjoy helping others? ConnectGroups is seeking friendly volunteers for its Community Link Booth at Fiona Stanley Hospital to help connect patients at the discharge point to community support services outside of the hospital. Full training will be provided.

If you're interested in volunteering, please email a resume and your availability to info@connectgroups.org.au or call (08) 9364 6909 for further information.

Health Consumers Excellence Awards

Health Consumers Excellence Awards - Recognising compassionate care

The Health Consumers Council Excellence Awards were created to honour the everyday heroes in health in WA, from the administrator to the clinician. We also recognise health consumers who go out of their way to make a difference to our health system.

Nominations for the 2019 awards are now open.

Since 2016 HCC has been announcing the winners of our Consumer Excellence to coincide with Patient Experience Week in April, and events are already in planning for 2019 Patient Experience Week, which will focus on the experiences of Aboriginal and Torres Strait Islander people using health services. Keep an eye out for more details to come on this. Click to find out more on the nomination process.

Mini-Bites from the Network

Supervised Exercise Has Variety of Benefits for PH Patients

Ana Pena BY ANA PENA IN NEWS.

Exercise has a wide range of benefits for people with pulmonary hypertension (PH), improving physical capacity and quality of life, among other advantages, according to a recent review study.

Researchers emphasize, however, that PH patients should only exercise under the guidance of PH and rehabilitation specialists. Read on for more.

We are very fortunate to have an organisation like PulmonaryHypertensionNews.com who bring together articles, blogs, forums, and information for the world to view and read. Here are the top 10 from their 2018 publications for you to enjoy. Click here to read more.

Lung Foundation Australia 

PHNA are not only advocates of pulmonary hypertension. We know we are part of a bigger picture, and as such we have always valued our working relationship with the Lung Foundation Australia. There is far too much discrimination and misconception about people living with all kinds of lung diseases, including PH. This month we are featuring the LFA's latest education campaign to help raise awareness about lung cancer. Please click on the graphic below to take you to the stories of these brave Australians. 

We’re asking for a fair go for lung cancer

Australians have spent too long asking the wrong question about lung cancer.

It doesn’t matter whether or not someone smoked. Instead, we should be asking the right questions – of our government, our community and ourselves. Why aren’t people living with lung cancer getting a fair go when it comes to research, treatment and support?

It ends today. This conversation needs to change, and we’re asking for your support.

Stigma is leaving Australians living with lung cancer isolated when they’re at their most vulnerable –and we need to ask why.

It is stifling the will to find a cure for lung cancer – and we need to ask why.

Only 17% of people living with lung cancer are still alive five years after diagnosis – and we need to ask why. 

Nobody deserves to have cancer, regardless of what type. Take a moment to listen to the compelling stories of the family and friends of Australians touched by lung cancer. If Australians can replace judgement, with action to better support those living with lung cancer, we really can change lives.

Carer Support & Services

 
Take advantage of thier
Online Newsletter
Join a Carers Support Group 
Attend information seminars
Counselling
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 
"The Mighty" is an organisation that covers a lot of different physical and mental health views. We throught we would share this article with you from thier many stories written by people with a lived experience. Click on the graphic to read...
Recipe of the month from PHabulous PHood
Introducing our new initiative "PHabulous PHood"! We like to bring you "Fresh, Fast, & PHabulous" recipes and cooking tips to help you eat well. Very soon we will be introducing the amazing Josie from "Mixed with Amore", who will be bringing us some great flavours and ideas for those of us who have limited energy in the kitchen! This month we hope you enjoy this delicious, easy, and colourful recipe from the famous Australian Women's Weekly. Click on the graphic to take you to the recipe, enjoy!  Editors note: If you have a recipe you would like to share please contact us.

Get Social with Us 

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