"It's (acute rheumatic fever/rheumatic heart disease) taken such a toll on my family when it could've been prevented".  This was a statement from a mother in New South Wales (NSW) during one of the four community consultations that helped shape the first ever Acute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) Framework for use in NSW.

The framework, recently published by the NSW Agency for Clinical Innovation (ACI), was guided by RHDAustralia and based on The Australian guideline for prevention, diagnosis and management of acute rheumatic fever and rheumatic heart disease (2nd edition). This document provides a guide to helping health services develop local approaches to addressing ARF and RHD, and supports local health districts to raise awareness about these conditions.

As part of the Better Cardiac Care measures for Aboriginal and Torres Strait Islander People project a range of NSW Health agencies and key stakeholders have been working together on priority actions to improve cardiac care for Aboriginal people. This framework is a culmination of work that was based on Priority area 5 of the Better Cardiac Care measures which focused on strengthening the diagnosis, notification and follow up of ARF and RHD.

Community consultation was an important step in the development of this framework.

“In developing this framework we held a series of workshops throughout NSW which lead to the inclusion of much needed and easily read information for the health workers to apply in their respective clinical settings. What surprised us was the little-known knowledge workers had of the impact of ARF/RHD in particular Aboriginal Health Workers and their community.” - Eunice Simons, Senior Project Officer for ACI

"I'm a health worker at an Aboriginal Medical Service and I didn't even know what rheumatic fever was until I had to bring my son into the clinic cos (sic) he had those symptoms you're talking about. I was lucky that our doctor happened to pass me and said he's got rheumatic fever, you'd better get him up to the hospital straight away". – Feedback from community consultation

Integral to the creation of the framework was input from a wide group of professional organisations including local health districts, the Aboriginal Health & Medical Research Council, Aboriginal community controlled health services, the Heart Foundation and primary health networks. This framework was developed in collaboration with the NSW Ministry of Health, Health Protection NSW and consultants, and Cox Inall Ridgeway.

Important in any health service framework is the incorporation of culturally safe and competent care measures to improve Aboriginal and Torres Strait Islander people’s health. ACI¹ notes that the framework is underpinned by 3 central principals.

1. Holistic and patient centred care - ARF and RHD are influenced by, a range of social, cultural, environmental and health factors. It is necessary to consider these factors, and the needs and values of patients and their families, to ensure actions to address ARF and RHD are responsive and appropriate.
2. Collaborative local partnerships - Responding to ARF and RHD requires strong relationships between individuals, families and communities, and the different parts of the health system. Health services likely to be involved in caring for people with ARF and RHD include local health district hospitals, public health units, Aboriginal community controlled health services, general practices and other primary care services.
3. Empowering patients, families and communities -There is considerable strength, experience and positive health action among individuals, families and communities. Empowering patients, families and communities to build on these strengths will contribute to more appropriate and successful ARF and RHD action.

In October 2015, NSW Health added ARF in people of any age, and RHD in people aged less than 35 years, to the NSW notifiable diseases list. NSW Health has also established a voluntary register for people diagnosed with ARF and RHD which aims to support patients, their families and their healthcare providers to manage the long-term preventive treatment and clinical reviews required to prevent further ARF episodes and cardiac complications.

The notification process for ARF and RHD cases is the main mechanism to identify people eligible for inclusion on the NSW RHD Register. The patient or their guardian must provide consent before they are added to the register.

Each local health district has an RHD coordinator to help identify people with ARF and RHD, enrol them on the register, and support their ongoing management.

More information and fact sheets about the register are available on the NSW Health website and the RHDAustralia website.

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References

1. New South Wales Agency for Clinical Innovation. Acute rheumatic fever and rheumatic heart disease in NSW [document on the Internet]. Chatswood: Chronic Care for Aboriginal People; 2017 [cited 2017 July 17]. Available from https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0007/363463/Acu...