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Northern Rivers Local News

From cancer patient to patient advocate

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DAVID Young, aged 64 from Byron Bay
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From cancer patient to patient advocate

“We had a full life, running a B&B in Byron Bay and I was still working as an advertising photographer, so it took some time to get our heads around the devastating diagnosis.”

DAVID Young, aged 64 from Byron Bay, decided to follow doctor’s orders and started to have annual health checks from the age of 50, but after three years, his GP became concerned about his blood results and referred him to a haematologist.
In 2012 he was shocked to receive a diagnosis of Waldenström’s macroglobulinemia (WM), a rare type of non-Hodgkin’s lymphoma, and was told he only had two to six years to live and would need to start immediate intensive chemotherapy.
“My wife and I were knocked for six by the news and went on an emotional rollercoaster with our dreams of retirement, travel and growing old together smashed,” says Young.
“We had a full life, running a B&B in Byron Bay and I was still working as an advertising photographer, so it took some time to get our heads around the devastating diagnosis.
“I decided I needed to learn more about WM, so I spent a couple of days researching and discovered that the prognosis and treatment were not quite as dire as I had been told.”
At the time of diagnosis, he had no symptoms, but eventually he started to experience fatigue, anaemia, leg and foot cramps, and night sweats.
He started taking rituximab which helped with his symptoms for a few years, but then it started to wane. He continued his research and discovered a clinical trial for zanubrutinib (Brukinsa), which he enrolled in.
Within a couple of months his symptoms abated, and he has now been on zanubrutinib for four years and is “pretty close to remission”.
“I’m delighted that Brukinsa (zanubrutinib) has just received Therapeutic Goods Administration approval for the treatment of adult patients with Waldenström’s macroglobulinemia and also for adult patients with mantle cell lymphoma (MCL) – another type of non-Hodgkin’s lymphoma,” he says.
“Brukinsa has given me a life with very few side effects and is keeping me in remission. And as it’s a capsule, it’s non-invasive with no down time, unlike traditional treatment with intravenous chemotherapy and its well-known harsh side effects.
“Thanks to Brukinsa, I went from feeling sorry for myself to climbing Cradle Mountain in Tasmania, so I want other people to benefit from this targeted treatment that has given me so much,” he says.
On behalf of WMozzies, Young was delighted to be invited by the Pharmaceutical Benefits Advisory Committee (PBAC) to take part in a pilot program as consumer advocates in the Brukinsa PBAC decision process.
WM and MCL patients will have immediate free of charge access to Brukinsa through a BeiGene sponsored Pre-Reimbursement Access Program until such time that WM and MCL are listed for reimbursement on the Pharmaceutical Benefits Scheme.
In a first for the PBAC, BeiGene (who discovered Brukinsa) expect to enter a facilitated resolution pathway in order to seek a listing date for WM.
Young’s mantra for other cancer patients is to take charge of their life and to do their own research. He has been a cancer advocate since 2013 and is the team leader of WMozzies, a patient support organisation for WM.
He also works with The Cancer Council, NSW Cancer Institute, The Leukaemia Foundation and Cancer Voices NSW.
“I’m passionate about educating people about cancer and encouraging cancer patients to take responsibility for researching the latest information and treatments out there,” says Young.

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Flying high – Redmen selected in Corella’s Squad

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Flying high – Redmen selected in Corella’s Squad

 

By Gary Nichols

TWO Grafton Redmen players have bolted into the NSW Country Corella’s team after impressive debuts for Mid North Coast at the NSW Country Championships in Tamworth over the June long weekend.

Natalie Blackadder and Yuri Fuller have been instrumental in Grafton’s run to a tilt at this year’s Mid North Coast Women’s 10s premiership.

Both players had no idea if they did enough to gain selection in the Country squad, however a phone call from the Corellas’ coach on Friday confirmed what they hoped to hear.

“The coach called me about 10am while I was at work. He asked me how I was going and said he was just giving me a call to inform me I had been selected in the Country squad,” a jubilant Blackadder said.

“He also gave me a few tips on what I have to work on to improve my game which was great.”

It wasn’t so smooth sailing for Fuller who had to endure a nervous ten-hour wait for the call she thought would never eventuate.

“I didn’t get an early phone call because I put down the wrong number on the registration sheet,” Fuller laughed.

“They had to go searching for me and I got the phone call about eight-thirty that night.

“During the day I just excepted my fate and believed I missed out.”

Blackadder admitted she was a bundle of nerves before Mid North Coast’s opening game in Tamworth but added as soon as she ran out on the field the nerves quickly vanished.

“I thought I was going to die when we were warming up,” Blackadder said.

“But once I got out there, I cleared my head, made my first tackle and I was all good.

“It was such a different experience playing fifteen-a-side rugby. You have your role, and you have to stick with it as there is less room than ten-a-side.”

For the rangy Redmen back-rower, it was by chance she even tried out for the representative side.

“I only tried out for Mid North Coast because Tamar (McHugh, Redmen captain) and Yuri did it. I thought to myself, why not give it a go and see where it takes me,” she said.

Fuller, a prolific try-scorer, who can slot into most positions in the backline, said her selection had a lot to do with the improvement of the Grafton Redmen Women’s side and the quality of women’s rugby throughout the Mid North Coast.

“Our team has improved dramatically over the past two years and obviously the growth of Women’s Mid North Coast rugby has produced a higher standard with quality players throughout the Zone,” Fuller said.

 

For more sports news, click here.

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GIANTS AFLW return to Canberra for first Community Camp

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GIANTS AFLW return to Canberra for first Community Camp

 

The GIANTS’ AFLW list is heading to Canberra on 4-5 July to meet the footy community and inspire the next generation of footy superstars, as part of the first-ever, league wide AFLW Community Camp program.

Around two months out from its NAB AFLW Round 1 clash at Manuka Oval on Saturday, 31 August, the GIANTS players will spend some time with their fans at their home away from home.

Headlining the camp is the Canberra Girls Footy Festival which welcomes girls aged 5-14 to get involved in a jam-packed night of fun and footy alongside GIANTS AFLW players.

To be held at EPC Solar Park in Phillip on Thursday, 4 July, the Girls Footy Festival is open to local footballers and NAB AFL Auskick participants, as well as anyone wanting to come and try Australian rules football in a fun and friendly environment. In addition to the GIANTS players, there will be activities and games, large inflatables, giveaways and, of course, a barbecue.

As part of the AFLW Community Camp, the GIANTS will also hold a Coach Your Way session featuring GIANTS coaching staff and its star defender and accredited Level 3 coach, Katherine Smith.

On Friday, 5 July the GIANTS players will connect with hundreds of Canberra school children when they visit to schools around the nation’s capital.

AFL NSW/ACT’s Participation and Programs Manager, Dylan Potter, said of the GIANTS’ 2024 AFLW Community Camp: “This is another great opportunity for footy fans in Canberra to meet elite players face to face.

“Auskick and junior girls will be particularly excited with the Canberra Girls Footy Festival kicking off on Thursday. This will be the first time we’ve brought women and girls from across the ACT to meet and learn from the GIANTS’ AFLW team and I can’t wait to see everyone loving the game together.

“Thank you in advance to the community for their support and the GIANTS AFLW program for visiting Canberra in a year when the ACT is celebrating 100 years of footy.”

Canberra Girls Footy Festival details
Date: Thursday, July 4
Time: 4:30pm-7pm
Location: EPC Solar Park, Phillip
Age: 5-14 years

Coach Your Way program
The Coach Your Way Program is exclusively available for women and girls looking to develop their skills in coaching.
Date: Thursday, July 4
Time: 5:30pm-7pm
Location: EPC Solar Park, Phillip
Register: Scan the QR Code

NAB AFL Auskick Burst in Canberra
Participants inspired by the GIANTS will have an opportunity to join the fun weekly, with NAB AFL Auskick opening in Canberra from 21 July, offering participants half a season of the Auskick experience and the beloved Auskick pack.

We call it Auskick Burst, with participants bursting on the footy scene and having a great time.

Auskick Burst will be offered at a greatly reduced price, which will be revealed before 4 July’s Girls Footy Festival.

NAB AFLW Season 9 coming to Canberra
GIANTS fans will get a chance to see the team in action in Round 1 of the NAB AFLW season and again in Round 3.
Round 1
1:05pm Saturday, 31 August
GIANTS v Western Bulldogs
Round 3
5:05pm Sunday, 15 September
GIANTS v Gold Coast Suns

Tickets for these matches will be available closer to the date.

 

For more sports news, click here.

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Seniors Urged to Speak Up About Home Aged Care Services

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Seniors Urged to Speak Up About Home Aged Care Services

 

The Aged Care Quality and Safety Commission has released its first report specifically for people receiving home aged care services, titled Complaints about Aged Care Home Services – Insights for People Receiving Care. The report highlights several critical issues and offers guidance on how recipients can address their concerns.

Major Issues Identified:

  • Consultation and Communication: The most frequent complaints (15%) relate to poor consultation and communication between service providers and recipients.
  • Fees and Charges: The second most common issue (10%) involves financial concerns, particularly regarding fees and charges.

Despite the high number of people accessing home care services, there are fewer complaints compared to residential aged care. Over the report period (July to December 2023), the commission received 8,021 complaints and inquiries, resolving about 4,800 of them (just over half). The average resolution time was 59 days, with 65% of complaints resolved within 60 days.

Encouraging Feedback and Complaints

The report emphasizes the importance of feedback from the over 1 million older Australians receiving home care services. It aims to boost confidence in the quality and safety of home care by ensuring recipients feel empowered to express their concerns.

Key Messages from the Commission:

  • Choice and Control: Recipients should have choice and control over their care.
  • Raising Concerns: If something isn’t right, recipients are encouraged to speak up.

Aged Care Quality and Safety Commissioner Janet Anderson and Aged Care Complaints Commissioner Louise Macleod both stress the importance of addressing issues directly with service providers. However, if this is not possible or if issues remain unresolved, the commission is available to assist.

How to Make a Complaint

Complaints can be made directly to the Aged Care Quality and Safety Commission through the following channels:

Who Can Make a Complaint:

  • Recipients of aged care services
  • Family, friends, representatives, and carers of recipients
  • Aged care staff and volunteers
  • Health and medical professionals

Important Note:

  • Service providers cannot punish anyone for making a complaint.
  • If you’re raising a concern on behalf of someone else, ensure they are aware and involved in the process.

For more detailed information on making a complaint and understanding the complaints process, visit the Aged Care Quality and Safety Commission website.

Conclusion

The report underscores the importance of open communication and the need for recipients of home care services to feel confident in raising issues. By addressing concerns directly or through the commission, recipients can help ensure they receive the high-quality care they deserve.

 

For more seniors news, click here.

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