It took the persistence of a loving grandmother to get the right diagnosis of rheumatic fever for her granddaughter. June Smith took Rikki to four doctors before she was admitted to hospital and a week later diagnosed with acute rheumatic fever. Disease identification can be a challenge for health professionals with little previous exposure to, or knowledge of, the illnesses. As seems to be true of June’s experience in regional New South Wales.

Timely and accurate diagnosis of acute rheumatic fever is vital in preventing damage to the heart valves known as rheumatic heart disease.

“My granddaughter woke up crying and crawled into bed with me, the next morning she was so sore, aching everywhere and in pain. I took her straight to the doctor. I took her to four doctors in the end. The first two said there was nothing wrong, the third and fourth ones didn’t know and sent her hospital. It took a long time to find out what was wrong; they kept taking blood and more blood. Rikki said "Nan,  I’ll have no blood left soon”…. after a week in hospital they finally said she had rheumatic fever” said June Smith, grandmother of Rikki.

Rikki will now need long acting penicillin injections to prevent a recurrence of rheumatic fever and potential heart damage. The injections need to be given every 28 days to make sure her heart is protected.

“I wish I had known more about the disease and wish the doctors had told me more. Other families need to be told what to look for and how to stop it so this doesn’t happen to them” said June.

Rheumatic fever and rheumatic heart disease are 100% preventable yet they continue to have devastating effects on Indigenous communities in Australia. Aboriginal and Torres Strait Islander people are up to eight times more likely than other Australians to be hospitalised for rheumatic fever and rheumatic heart disease, and nearly 20 times as likely to die from the disease.

While the unacceptable burden of rheumatic fever and rheumatic heart disease in Indigenous communities in Northern and Central Australia has been recognised as an issue for some time, the impact it is having on Indigenous, Pacific Islander, Maori and refugee populations in New South Wales is less well known.

From the 2nd of October 2015, New South Wales Health has made both acute rheumatic fever and rheumatic heart disease notifiable under the Public Health Act, and established a voluntary register for people with rheumatic fever and/or rheumatic heart disease to improve the long term clinical care of these patients. Notification of people aged less than 35 years and diagnosed with rheumatic fever and/or rheumatic heart disease is the first step in accessing the NSW RHD Register.

“Under the Better Cardiac Care for Aboriginal People initiative, NSW committed to making rheumatic fever and rheumatic heart disease notifiable so these conditions can be better monitored and managed. We look forward to working with Aboriginal Community Controlled Health Services and Aboriginal communities to reduce the burden of these preventable conditions” said Dr Vicky Sheppeard of NSW Health.

RHDAustralia’s Guideline app, including the ARF diagnosis calculator can be downloaded for Iphone and Android phones from http://www.rhdaustralia.org.au/apps

NSW clinicians can contact their local public health unit by calling 1300 066 055 to notify patients with suspected new and recurrent episodes of rheumatic fever and all patients with rheumatic heart disease aged under 35 years.

June and Rikki’s story first appeared in the NACCHO Health Newspaper in November 2015.