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Consumer Advisory Group

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FORMaT.01_3.docx

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You Don’t Know What You Know Until You Ask … So We Did

You Don't Know What You Know Until You Ask … So We Did

 PCD Australia recently circulated a Listening Survey to gain a greater understanding about the PCD community's needs and what they want PCD Australia to focus on.
 While this number of people who completed the survey was a little disappointing, we did gain some valuable insights. Most responses were from parents while around 25% were from people with PCD.

SUMMARY of FINDINGS
Clinical care was the number one issue and the PCD community wants PCD Australia to "work closely with clinicians, allied health professionals, nurses and researchers to provide exceptional service and continue to drive new and innovative patient outcomes".
 Respondents saw the need to raise the profile of PCD and gain national awareness. Public relations social media and marketing were seen as useful profile raising and advocacy tools. This was supported by the need for PCD Australia to become a subject matter expert for government, industry and the media.
 Advocating for the best drugs and treatments was high on the agenda. International research collaborations were seen as a way to ensure the best gains are achieved in the fastest time and funds are not wasted through duplication.
 
Clinical improvement programs and services like standard of care, conferences, peer reviews and a data registry were seen as a high priority and this validates PCD Australia’s current work on Standards of Care and community conferences and information events.
 
The burden of PCD in both the treatment and financial sense can be overwhelming so it was not surprising that "support(ing) PCD families and individuals through services" and the provision of "limited monetary support to cover the cost of items such as gym memberships, equipment, parking and supplements" was supported by over 38% of respondents.
 
A financial commitment to research received strong support while the community expected PCD Australia to "create innovative and enduring funding streams and manage finances and Board governance effectively".
 
Long term partnerships with corporates, the media, philanthropic trusts and foundations were seen as appropriate ways to support PCD Australia’s coffers. Pleasingly, the community wants PCD Australia to communicate on a regular basis.
 The Listening Survey also asked some poignant questions designed to tease out where issues in treatment, care and understanding may exist.
 
DIAGNOSIS
When asking about diagnosis the responses were many and varied. From the adult population time to diagnosis could be in excess of 30 years and described as "gruelling", "scary" and "very difficult".
 When parents talked about their child’s diagnosis, the duration was significantly shorter, and two respondents said the clinical support was "amazing" and "very straight forward". This is an indicator that things have definitely improved over the years and that early diagnosis is crucial for both physical and mental health.
 PCD Australia’s Strategic Plan identifies timely diagnosis as a key issue and will advocate for faster diagnosis, better access to diagnostic tools and clinician and GP education.
 
GREATEST FEAR
Disease management, infection, loss of lung function and the need to have a lung transplant were all fears mentioned by a number of respondents. However, the most compelling concerns included "falling off the radar and being forgotten" with children missing out on the good things in life and death.
 PCD Australia’s Board included parents and people with PCD and therefore can sympathise and empathise with these fears. The Standards of Care will improve outcomes, access and equity across Australia and in turn reduce the fear factor.

BAD EXPERIENCES
During both the diagnosis and treatment journeys people are frustrated and marginalised when...
they feel they are "not being heard"
they are "misdiagnosed" or "patronised"
"clinicians and GPs lack PCD knowledge" and care is then compromised
"school bullying" is a result of a lack of understanding
"treatments available to other lung conditions like CF are not available to people with PCD".
 
PCD Australia will focus on PCD awareness to reduce the impact these issues.
 
POSITIVE EXPERIENCES
Although PCD presents hurdles and causes anxiety, many Listening Survey respondents could see a bright future and were encouraged by the resilience and strength of people with PCD.
 They mentioned IVF opportunities, "things going on behind the scenes" like clinical trials and research and "longstanding" and "outstanding" relationships with medical professionals.
 PCD Australia is positive about the future and believes that with improved diagnosis, care and support people with PCD and their families will enjoy result in better health outcomes and better longer lives for all.

 Thank you to those who participated in the Listening Survey. The PCD Australia Board hopes the findings are of interest to the whole PCD community.
 The Survey will inform our work and provide us with a guide to what is really important to the community we serve.
 If you did not complete the Survey and would like to have your say, then please contact me at catherine@pcdaustralia.org.au
 
Kind regards
 
 
Catherine Kruljac
President
PCD Australia

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AGM - 20th September 2022 -7.00PM

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PCD Australia Plan on a Page

In my last communique I shared PCD Australia’s plans for 2022 and mentioned the Board’s desire to have a bold yet pragmatic vision and remit for the next decade. Things have moved along well, so here is an update.
 
The community survey has been distributed to more than 500  people and we ask that you share it with family, friends, clinicians and colleagues. If you have not received it yet, please email nettie@good-works.com.au .
 
The strategic planning session cast a great deal of light on what PCD Australia is capable of doing and what are the future challenges and objectives. Nettie Burke from GoodWorks has prepared a detailed document as well as a Plan on a Page. This can be found at attached link below.
 
Here are some excerpts from the Strategic Plan...
 
PCD Australia’s Mission is to support everyone in its community by effectively advocating for improved diagnosis and care while providing tangible support for people with PCD and their families.
 
PCD Australia’s remit is to be a passionate advocate for the delivery of first-class medical care and rapid diagnosis. As an exceptionally demanding disease, PCD requires considerable ongoing management, and this can be costly. PCD Australia provides direct assistance and peer support to people with PCD so they can access the best treatments and services.
 
Prof Phil Robinson and Dr Lucy Morgan have agreed to Chair the PCD Standards of Care Steering Committee, but we still need people with PCD, their family members, friends or colleagues to provide advice and oversight. If you can spare two hours a month, please email nettie@good-works.com.au .
 
The new PCD Australia Constitution is complete and we are still looking for new Board and subcommittee members. We have publicly advertised the opportunity however if you would like to throw your hat in the ring, please email nettie@good-works.com.au .
 
The time commitment for a Board member is approximately four hours per month and we need people with the following skills - communications, marketing and social media; fundraising; corporate and industry partnerships; legal; governance and policy development; finance, audit and risk; company secretarial; and strategic and business planning.
 
I'm also very pleased to say that all documents, policies and potential partnerships have been reviewed and PCD Australia now meets the highest of Governance standards. We are set for a very bright and busy future and we would love you to be part of it. Please get involved and help PCD Australia really make a difference.
 
Kind regards
 
Catherine
 
Catherine Kruljac
President
PCD Australia Inc.
catherine@pcdaustralia.org.au

PCDA_Plan_on_a_Page_V3.docx

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A New Era as Decade Two Approaches

In February 2023 PCD Australia will be 10 years old and since inception we have focused on disease awareness, information services and optimal clinical care that improves quality of life.   Our fundraising has enabled advocacy for better healthcare, patient support services and research funding. All PCD Australia’s work is designed to reduce the burden of PCD.   The PCD Australia Board is now working on a vision for our second decade of service and it’s key that we involve the community in identifying priorities and objectives. Our current activities include:   A community survey to understand what is important to all our stakeholders – medical, research, political, media and most importantly people with PCD and their support networks. When the survey lands in your email inbox please share it with family, friends, clinicians and colleagues.                                                                                                          A strategic planning session led by Nettie Burke (former Cystic Fibrosis Australia CEO) and this will form part of our funding focus for the future.                                                                                                   The development of the PCD Standards of Care which will be completed in 2023. We are establishing a Steering Committee and need consumers to provide advice and oversight.                                                                                                    A move from a state-based association to a company limited by guarantee so we can develop a strong national footprint. We will be looking for new Board and subcommittee members to enable us to do more and we hope to have strong interest from the broad PCD community.                                                                                                                     A review and regeneration of governance documents, policies and potential partnerships.   The PCD Australia Board needs community consultation and collaboration to get future plans right and so if you would like to be involved in any of the above activities, please contact  nettie@good-works.com.au .   We understand that everyone is busy with managing their PCD and getting on with life however even a small commitment could make the world of difference.   We would love to welcome you to a clinical, advocacy, research or funding advisory group, knowing that with your help the next decade will advance treatment, care and knowledge. This will vastly improve the lives of both those that live with PCD and the families that support them.   Kind regards   Catherine    Catherine Kruljac President PCD Australia Inc. catherine@pcdaustralia.org.au

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Festive Greetings From PCD Australia

Dear Friends,

As we look forward to the next year, we want to pause to say thank you to everyone who has supported us in 2022. Our work can only happen with you.

This year PCD Australia attended a total of 20 meetings and events. 

We attended events in Canberra and Sydney , we were accepted into the Australian Patient Advocacy Alliance, meet with Politicians, have 4 new board members with a range of skills and expertise that will help us in making changes so we can make more of an impact for all living with PCD and have new and exciting projects and collaborations happening in the New Year .

Through the content produced for our social media and website we reached more people than last year. Thank you all for your likes and for sharing.

Thank you to all our donors and fundraisers who helped us raise over $36,000 in 2022. This came from Donations, Peoples Choice Lottery, BBQ's at Bunnings , Events in Mildura and WA - Dunsborough Bay Yacht Club and the PCD Awareness Bike Ride Campaign  from people who bought a wristbands  from us that see the value of what we are doing, and from lots of other sources where people felt they could be generous to the cause even in these difficult times.

We ensure you that your voices were at the centre of decisions being made about PCD health.

We hope that you all have the opportunity to relax over the coming days, and we look forward to seeing you in the new year as we look to work harder than ever for PCD health.

Best wishes,

All the team at PCD Australia Board

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Phone Cycle

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Survey on the effect of COVID-19 on people with PCD

We know little about how the new coronavirus disease (COVID-19) affects people with Primary Ciliary Dyskinesia (PCD). Therefore, PCD support groups all over the world asked for a research study which was set up in collaboration with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland.

COVID-19 infections in people with PCD is a research study that uses anonymous online questionnaires to assess how many people with PCD get COVID-19 and what happens if they catch COVID-19. It is a longitudinal study, so people can join anytime.

 

Participants receive a detailed questionnaire at the start, and then short weekly questionnaires to monitor the progression of symptoms.

 

Ideally, people will join before they have a COVID-19 infection, but can also join at a later time.
To ensure that we address all relevant areas affecting people with PCD, participants are welcome to suggest topics to include in our questionnaires.

 

Fill out our survey on the effect of COVID-19 on people with PCD

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Young Lungs Program

Introducing the community groups was Margaret Polacska, President of CDH Australia and Catherine Kruljac, President of PCD Australia. We look forward to ongoing participation in the Young Lungs program to advance services for PCD families.

 

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PCD EVENTS

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