Delegates who attended an AGW 17 session on the recently released IBD Audit were treated to a guest speaker not usually seen at an annual clinical conference – a patient.

And not just any patient – the ambassador of Crohn’s & Colitis Australia, and Miss Universe Australia finalist Tahlia Giumelli.

This year the 24-year-old is the face of CCA’s campaign Live Fearless after being diagnosed with Crohn’s Disease in 2013.

Dr Greg Moore, Head of IBD at Monash Health and a CCA board member, a speaker at the session, said the whole session was “very different”. He conceded that while it was rare to include a patient in this type of forum, it was symbolic in this case.

“Having a patient here emphasises that this has been such a collaborative process,” he told the limbic. 

The IBD Audit is an element of CCA’s IBD Quality of Care Program which has been overseen by a multi-organisational steering committee, including Dr Moore.

As reported by the limbic at last year’s AGW the audit painted a grim picture of the overall performance of public hospitals across Australia when it comes to meeting the minimum standards for IBD care.

Of the 71 hospitals that participated in the 2012-2013 audit, only 1% had a full IBD team, 24% had at least a partial IBD service and 39% had an IBD nurse.

“Despite the availability of evidence-based guidelines, few sites had management protocols in place,” the report revealed.

“Documentation of fundamental factors in IBD care was incomplete and inconsistent in the audited records. Nutritional assessment, generally, was suboptimal. Only two in three people discharged on immunosuppressive medication with potentially serious side-effects had a plan for safety monitoring.”

Even partial IBD services deliver better quality care, the report found. One of the most striking differences was a 15-17% reduction in the number of admissions through the emergency department in those sites with a Partial IBD Service. Multidisciplinary assessment was more likely to occur at sites that have the resources and roles to meet the needs of people with these complex diseases and can manage the new and evolving treatment options.

“The national IBD Audit highlights many deficiencies in the delivery of IBD care across Australia and, more importantly, has shown that a number of simple and practical recommendations can provide significant benefits to patients and savings to the healthcare system,” the report stated.

The results of this failure comes at a huge cost to the health system, patients and taxpayers – hospital costs for 2012 were estimated to be over $100 million; productivity losses, over $380 million; and total indirect costs over $2.7 billion.

The report went on to make 13 recommendations to address the issues highlighted by the audit. These can be seen in full in the online version of the report here.

Dr Moore said the report provided an important blueprint for the delivery of quality of care for all IBD patients no matter where they are located, but he said there was still a long road to travel in getting the appropriate funding in place both at a state and federal level.

However he said there had already been some discussions at a federal government level, which showed promise.

“A lot of the data is particularly useful at a local level,” he said.

Dr Moore said securing funding for IBD nurses should be a major priority.

“They’re far more cost effective, available and useful than just relying on a specialist,” he said. “We’re so busy, and they can provide such a high level of support we really need to push hard for this.”

And he said general practice was not the ideal place for IBD patients to be effectively managed, given the fact that the average GP was “very uncomfortable managing IBD and only have a handful of patients on their books.”

“We can’t expect GPs to have expertise in all specialist areas of health,” he said. “But there needs to be easily accessible pathways of care that they can access for their patients.”

Dr Moore said that while the results of the audit were deeply concerning, they were not surprising, and clinicians and lobby groups should now focus on achieving implementation of the recommendations. And he is hopeful that the money will be there.

“We’re certainly heading in the right direction,” he said.