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By Michael Woodhead

29 Jan 2023

IBD patient advocacy groups are calling on political parties to commit to funding regional IBD nurses to enable patients to access biologics in areas where there is a lack of specialist gastroenterologist services.

Crohn’s & Colitis Australia (CCA) says its plan would see IBD specialist nurses working in conjunction with gastroenterologists in a hub and spoke model  to facilitate many of the processes needed to supply biologic agents to patients with IBD.

CEO Leanne Raven notes that only specialists can initiate these treatments, with ongoing supply requiring rigorous assessments including patient diaries and monitoring of blood test results.

However the lack of specialist gastroenterology services in regional Australia is acting as a barrier to early diagnosis of IBD and provision of effective treatments.

“Referral to specialist care is critical to prevent functional disability, disease progression, social and mental health impacts and healthcare costs. A recent Australian study found that the median time from symptom onset to initiation of DMARD (biologicals) therapy was around six months, with some patients experiencing delays of up to a year,” a CCA report noted.

“These medications have been available for over a decade yet eligible rural and regional patients have limited access to these drugs because of the lack of multidisciplinary support in the primary health sector regionally,” said Ms Raven said in a statement released for World IBD Awareness Day, 19 May.

“Ideally, we would prefer patients to have ready access to [gastroenterology] specialist services but in their absence an integrated hub-and-spoke model of care with specialised nurses integrated into existing health care networks will improve the quality of care that is lacking in these communities,“ she said.

According to CCA, IBD nurses would not be working in isolation but would be part of a multidisciplinary team and would be linked to individual specialists or specialised IBD centres.

They could also be supported by helpline nurses in the patient organisations where they exist and incorporate telehealth services.

“A major role would be to facilitate and optimise evidence-based access to biological agents by co-ordinating the applications to meet the PBS requirements; educating and supporting patients with their self-injection therapy; coordinating care and education on lifestyle management such as nutrition and physical activity for these group of patients who have increased multi-morbidity,” CCA said in a recent pre-Budget submission for funding.

The group said their quest for $3.6 million to fund a pilot program of IBD nurses in each state was knocked back by the Morrison government at the recent federal Budget, but it is now calling on members to raise the issue with local MPs ahead of the election.

“Election commitments from all parties and candidates in the upcoming federal election would shine a spotlight on the urgent need for regional nurses to support those living with IBDs,” it said.

“Funding is needed to make this proposal a reality and contacting local members and senators, leaders, political parties, and candidates during the federal election campaign provides a great opportunity to secure commitments.

“Political offices record the number of calls and emails they receive on an issue, and it affects their own advocacy within their party and in the community. That’s why we are encouraging our supporters to call or email their local member and other candidates,” Ms Raven said.

CCA worked in partnership with organisations including Gastroenterological Society of Australia (GESA),  and Gastroenterological Nurses College of Australia (GENCA) and IBD Nurses Association (IBDNA) on the proposal.

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