“Patients are suffering unnecessarily, enduring heightened pain and distress, because the medications that typically control their symptoms are either unavailable or prohibitively expensive,” says Dr Peter Allcroft, Chair, Palliative Care Australia.

Despite repeated calls for action from the palliative care sector, Palliative Care Australia (PCA) says there has been little progress toward ensuring a stable supply of these life-changing drugs.

“A collective of 7 organisations wrote to parliamentarians in early December [2024] trying to escalate this issue after months and months of slow or no progress, people, including children are dying without adequate pain relief,” says Dr Allcroft.

‘Supply becoming increasingly uncertain’

Most of the affected medicines are vital opioid analgesics that have been used for decades to manage severe pain and other symptoms in palliative care patients.

With their supply becoming increasingly uncertain, clinicians are forced to prescribe less effective alternatives, resulting in less reliable pain relief and risking unwanted side effects.

Adding to the distress is cost, with many of the alternative medications not subsidised through the Pharmaceutical Benefits Scheme (PBS).

One of the most startling examples is hydromorphone SR, which costs the public $182 for 32mg, which a non-PBS-listed alternative is $4209 for 100 tablets.

PCA campaign to resolve the ongoing issue

As part of the ‘better access to palliative care’ campaign leading up to the federal election, PCA has launched an 11 point plan to resolve this ongoing issue.

“Our recommendations centre on establishing a national stockpile of critical medicines, fostering domestic pharmaceutical manufacturing, strengthening the PBS, and empowering the TGA,” says Dr Allcroft.

“Four hundred people die every day of a terminal illness — limited or no access to these critical medications has a ripple effect through families and communities.”

With nearly 20,000 signatures already on the campaign’s petition, advocates hope the issue will be addressed ahead of the federal election, ensuring better quality of life for those in palliative care.

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The new module, according to Dementia Australia CEO Maree McCabe, will help healthcare workers ensure positive interactions and trust development with those living with dementia.

The free body language module adds new content to the Ask Annie app, which provides healthcare workers with interactive, self-paced teaching modules, to refresh, strengthen and refine their skills.

“Good communication in dementia care is critical,” says Ms McCabe.

“Being aware of our body language, how it might be interpreted and ensuring it is as positive as possible can help people living with dementia feel at ease, build trust and connect.”

Body language is physical behaviour, which is used to communicate a person’s thoughts and intentions.

“Facial expressions, body posture and even the personal space you provide can make all the difference to the experience of a person living with dementia during interactions in everyday settings – whether it be when eating a meal, or supporting them to have a shower,” says Ms McCabe.

“We’re very pleased to offer this as gifted content, in celebration of our aged care workforce.”

Dementia Advocate Bobby Redman, Chair of Dementia Australia Advisory Committee lives with dementia and says the app will be very useful in helping carers to be aware of their body language, which is so important, especially as language skills reduce.

“It is vital to remember that our senses are impacted by dementia – vision, hearing and touch all change, and we may experience things in a very different way,” says Mr Redman.

“Please help us to cope with these changes by using clear body language to supplement what you are saying – actions speak louder than words.”

The Ask Annie app content continues to grow and the new body language module joins another four gifted modules already available.

Dementia Australia is focused on adding to the educational content in Ask Annie to ensure care workers have access to new information and the opportunity to continue to expand their knowledge.

Ask Annie can be downloaded for free individually via the Google Play Store or Apple App Store with free access to five modules.

The full application with access to all modules is $60 per person per year, with multi-license packages available for organisations.

For information on purchasing packages please email cdl@dementia.org.au.

Ask Annie was developed by Dementia Australia with Deakin University’s Applied Artificial Intelligence Institute (A2I2), and funded by a Gandel Foundation multi-year Major grant.

For more information, please visit dementialearning.org.au/askannie.

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The theme of this year’s national campaign, ‘Millions of Reasons to Care’, seeks to bring attention to the 2.65 million carers around the country who provide outstanding care and support to their loved ones.

Chair of Carers Queensland, Jim Toohey says Carers Week is an opportunity for all Australians to show their appreciation for carers and to let them know why they care.

“One in 11 Australians is a carer and in Queensland, there are 533,400 carers.

“They have all played a critical role during this ongoing pandemic, and it’s important that we acknowledge their contribution. Now, more than ever, we have millions of reasons to care.

“Before Covid carers were estimated to be providing 2.2 billion hours of unpaid care last year – that’s over 42 million hours every single week.

“The total cost to replace all informal care was estimated at almost $78 billion, or almost $1.5 billion every week**,” he says.

“National Carers Week is about recognising and celebrating carers. The campaign is crucial in helping people who don’t see themselves as having a caring role, to identify as carers and access the support they need.

“At Carers Queensland we work with carers, people with disability and their families to make their lives better.

“We encourage everyone to help us raise awareness of the reality of unpaid caring and build a carer friendly Australia.

“Increasing awareness of the role carers play in our communities, is one way to establish a better support system for them,” he adds.

As part of the National Carers Week celebrations, Carers Queensland is hosting a range of online and face to face events for the broader community to get involved and show their appreciation for carers.

For more information on National Carers Week events or to get involved, visit: carersqld.com.au/carers-week or contact Carers Queensland on (07) 3900 8100.

References:

*Australian Bureau of Statistics (2018) Survey of Disability, Ageing and Carers
**Deloitte Access Economics (2020) The Economic Value of Informal Care in Australia 2020

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In line with the NPSA’s rotation policy, Sigma CEO and Managing Director, Mark Hooper will step down from his role as Chair but will continue to serve on the Board.

“The Board extends sincere thanks to Mark Hooper for his excellent leadership of our industry association, which most recently has seen successful completion of the important 7^th Community Agreement (7CPA) negotiations with government,” says Mr Vincent.

Mr Vincent has a thorough knowledge of the sector and of the importance of maintaining the supply chain for the benefit of patients everywhere, and The Pharmacy Guild of Australia congratulates him on the appointment.

“More than any other, 2020 has put strains on the medicine supply chain, including through the bushfires and now the Covid-19 pandemic, and we appreciated the collaborative approach taken by wholesalers and the NPSA in dealing with the challenges that have been thrown at the sector,” says George Tambassis, National President of the Pharmacy Guild.

“We congratulate Richard, and his Deputy Chair, Brett Barons of Symbion, and look forward to working with them both. We also thank the outgoing Chair, Mark Hooper, for his service to the sector at the helm of the NPSA.”

As the peak body of Australia’s Pharmaceutical Benefits Scheme wholesalers, the NPSA plays a vital role in the success of the PBS and the timely and equitable delivery of medicines to all Australians through 5,800 community pharmacies.

“The broad supply task for PBS medicines is a huge logistical challenge, which the wholesalers and the NPSA have risen to year after year,” adds Mr Tambassis.

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Since 2009, Mr Morris has held the position of chief pharmacist for South Australia and in 2012 was also appointed executive director of SA Pharmacy. Before this he was deputy CEO of the National Prescribing Centre in the UK. Mr Morris has extensive experience within health and related areas, spanning government, community, hospital, primary care, industry, university and NGO sectors.

NPS MedicineWise Chair Peter Turner said: “We need continued investment in quality use of medicines and other health technologies at a time when there is a proliferation of new medicines and diagnostics reaching the Australian market.

“Mr Morris brings exceptional leadership skills coupled with a deep knowledge of quality use of health technologies that will ensure NPS MedicineWise continues to deliver on its mission to enable people to make and act on the best decisions about medicines, health technologies and other options for better health and economic outcomes.”

Mr Turner also paid tribute to the outgoing CEO Dr Lynn Weekes: “Lynn’s leadership over the past 20 years has been exemplary and has cemented NPS MedicineWise and quality use of health technologies as an integral part of the health system.
“We applaud Lynn’s vision and unwavering commitment to supporting consumers and health professionals right across the system to achieve better health outcomes, and we wish her every success for the future.”
Mr Morris will take up the position in early September.

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The organisation says Ms de Somer is a dedicated advocate and policy expert for the pharmaceutical sector and well known as a trusted expert in medicines policy, having been Medicines Australia’s director of policy and research for the past five years and interim CEO since April.

Ms de Somer has worked on issues critical to the sector, including the negotiation of the five-year strategic agreement made with the federal government in 2017.
Medicines Australia says she recognises that managing medicines policy requires a deep understanding of the commercial imperatives of companies and how policies interact with commercial decisions.

accepting the role, Ms de Somer said, “I am committed to broadening the understanding of the immense value this industry brings to the economy and to the community, and ensuring that the system is ready to handle the newest technologies.
“Medicines Australia members are at the forefront of medical science innovation both in Australia and around the world, and it is important that Australian patients continue to get access to these world class treatments,” Medicines Australia Chair Wes Cook said.

“The board is confident that under Elizabeth’s guidance, Medicines Australia is well positioned to continue building community understanding of the value of new medicines while focusing on ensuring Australians have access to these latest innovative medicines that they need when they need them.”

Pharmacy Guild of Australia Executive Director David Quilty congratulated Ms de Somer on her appointment.

“Elizabeth de Somer has a strong knowledge of the pharmaceutical sector and a deep commitment to the timely and affordable provision of innovative medicines to the Australian community,” he said. “The Guild has a good working relationship with Ms de Somer and Medicines Australia, and we look forward to working together in the interests of access and the quality use of medicines.”

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