🤎 Ostomy Funding and Awareness

Dear Mr Guy Barnett,

Thank you for taking the time to meet me to discuss being an Ostomate, having a stoma and my passion for building more resources, awareness and understanding for us within this community.

Vulnerability around all the facets that surround becoming an ostomate and having a stoma is challenging and forever educating, creating awareness, and building understanding, confidence and acceptance as individuals is a lifelong journey.

Becoming an ostomate is a life-altering experience that can bring about a whirlwind of physical and emotional challenges.  For many individuals, the journey begins with a medical necessity, often stemming from conditions such as inflammatory bowel disease, cancer, or traumatic injuries.  The creation of a stoma, a surgically formed opening that allows waste to exit the body, marks a significant transition that can be both daunting and liberating.  This new reality presents unique physical adjustments, as well as profound psychological hurdles that demand resilience and adaptability.

Physically, adjusting to life with a stoma involves learning to manage the practicalities of stoma care.  From mastering the correct application and maintenance of ostomy appliances to understanding how diet and hydration can affect output, the day-to-day routine can initially feel overwhelming.  Many ostomates experience changes in body image and self-esteem, grappling with feelings of vulnerability and the fear of social stigma.  It’s common to confront practical challenges, such as navigating clothing choices, participating in physical activities, or travelling.  Experiences that once seemed effortless can now require careful planning and consideration.

The mental and emotional landscape of becoming an ostomate can be equally complex.  Feelings of loss, anxiety and isolation are common, as individuals come to terms with their new reality.  The stigma surrounding ostomies often leads to misconceptions and a lack of understanding from those who have never faced similar challenges.  Consequently, many ostomates may find themselves feeling disconnected from their communities or even from their own identities.  Building a supportive network becomes essential, yet it can be difficult to find spaces where open dialogue and education are prioritised.

To address these challenges, it is crucial to foster resources that educate, support, and raise awareness about the ostomate experience.  Initiatives aimed at demystifying ostomy care can play a pivotal role in breaking down stigma and promoting understanding.  Workshops, support groups, and educational campaigns can empower both ostomates and their loved ones, providing practical knowledge as well as emotional support.  Online platforms, social media, and community outreach can serve as powerful tools to connect individuals, share personal stories, and provide encouragement.

Furthermore, engaging healthcare professionals in ongoing education about the emotional aspects of living with a stoma can enhance the support patients receive.  Understanding the psychological impact of an ostomy can lead to more empathetic care, ensuring that patients feel heard and validated in their experiences.  By promoting a culture of openness, we can create environments where individuals feel comfortable discussing their concerns and celebrating their victories, no matter how small.

In conclusion, the journey of becoming an ostomate is marked by significant physical and emotional challenges, but it also offers opportunities for growth, connection, and resilience.  By building robust resources and fostering a culture of awareness and understanding, we can transform the narrative surrounding ostomies, paving the way for a more inclusive and supportive community.  Together, we can ensure that no one feels alone on this journey and that everyone understands the strength and courage it takes to embrace life with a stoma.

Funding and Access to Stoma Care

The Australian government has not increased investment in the Stoma Appliance Scheme for over a decade.

A stoma is a surgically created opening on the body that allows waste to leave the body when normal bodily functions are not possible.  Unfortunately, having a stoma significantly impacts a person’s life, both physically and mentally.  Many patients face the fear of stoma leakage, which affects their ability to work, travel, and engage in daily activities.  This fear can contribute to serious mental health challenges, including depression and social isolation, which in turn negatively impact family life and overall quality of life.

A Victorian study has revealed that 40 per cent of ostomates suffer from depression, underscoring the severe impact on their mental health.

In comparison to other countries, Australia is lagging in its support for ostomates, particularly in terms of product reimbursement.  In the UK, twice as many stoma products are reimbursed for patients compared to Australia, where only 3,800 products are covered versus 9,500 in the UK.  Even more concerning is the fact that Canada spends five times more on stoma care per patient than Australia.

Innovative and high-quality stoma products have the potential to greatly improve the quality of life for ostomates.  In Ireland, when the number of available stoma products increased in 2015, a subsequent study showed that ostomates’ quality of life improved by 14 per cent.  Access to high-quality products reduces treatment costs and enhances patients’ physical and emotional wellbeing.

The lack of increased investment in stoma products by the Australian government is a critical concern.  This ongoing neglect not only affects physical health but exacerbates anxiety, depression, and social isolation.

Impact of a Stoma on Patients

92% of ostomates worry about leakage of stomal effluent

• 72% check their pouching system regularly due to leakage risk

• 65% are affected in their ability to work to varying degrees

Consequences of leakage anxiety include isolation:

• 20% stay at home

• 13% avoid people

• 15% avoid physical contact with family and friends

54% of those who worry about leakage use more products

Source: British Journal of Nursing, 2022, Vol 31, No 6 (Stoma Care Supplement)

The Stoma Industry Association

Our Mission

We aim to foster continuous improvement by prioritising patient outcomes and innovation, positioning Australia among the global leaders in stoma care provision.

Why This Matters

Australia has fallen behind other nations due to a lack of incentives for innovation.  Among the 50,000 Australians living with a stoma:

• 46,000 are concerned about leakage

• 10,000 remain at home

How We Achieve This

• Over $5 million invested in product and supply solutions

• More than $400,000 allocated to healthcare professional education

• Advocacy for Stomal Therapy Nursing as a specialised service

• Ongoing research and development investment

What We Seek

We call on the Government to address underinvestment in stoma health over the past 12 years and demand transparency in the review of the Stoma Appliance Scheme.

Key Recommendations

1. Implement an evidence-based approach for new applications, similar to the PBS.

2. Review pricing annually and ensure fair supplier compensation.

3. Improve emergency and new-member supply arrangements.

4. Conduct regular patient reviews.

5. Address shortages of health professionals and stomal therapy nurses.

6. Increase GP awareness of ostomate care.

There has been no price increase for stoma appliances since 2012.  Benchmark pricing has not accounted for inflation, which has risen over 39 per cent since indexation ceased.

Patients in Australia lack access to modern stoma products, with over half of items on the SAS schedule being more than 25 years old.  Restrictions imposed by approval requirements and shortages of qualified professionals further limit access.

Stomal Therapy Nurses play a vital role, yet shortages mean many patients do not receive regular reviews, appropriate products, or use the scheme at all.

Changes in body shape affect stoma care needs, making customised appliances essential.  A comprehensive Health Technology Assessment process is required to meet the diverse clinical needs of Australian ostomates.