People living with Rheumatic Heart Disease (RHD) have highlighted the need for health systems to involve them in decisions that directly affect their care.
This was highlighted by patients participating in the Regional RHD Forum, who say services should be designed with patients rather than for them.
Speaking during Day Two of the forum, which focused on Action Planning and Implementation, The Kids Research Institute Australia’s Dr Joseph Kado says the meeting aimed to put into practice the World Health Organization's advice that services for people living with RHD should not be planned without their involvement.
Dr Kado says the workshop allowed people living with RHD to lead discussions and identify changes they believed could be implemented with minimal effort, as well as broader systemic issues that would require longer-term action.
He says one of the major frustrations expressed by both healthcare workers and people living with RHD was the lack of commodities required for monthly treatment.
Dr Kado says the absence of these commodities creates frustration for both providers and patients, particularly when families have gone through the difficult process of convincing a child to receive an injection, only to discover that the treatment cannot be administered because the necessary supplies are unavailable.
Dr Kado stresses that Ministries of Health across the Pacific need to engage people living with RHD in all services planned for them, noting that physical proximity to a clinic does not necessarily mean people have access to healthcare.
He used the example of a woman with three children, one of whom requires regular injections, saying she may be unable to take all of her children to the clinic on the same day and instead has to wait for her husband to return home before seeking treatment.
He says that if clinics operate only during standard working hours, families in such situations do not truly have access to services, even if the clinic is located next door.
He adds that if clinics are not open on weekends, when support people are available to assist families, access remains limited.
Dr Kado says discussions around access and equity showed that while some barriers can be addressed relatively easily, others represent larger challenges within health systems.
He says participants also highlighted simple improvements that could make a difference to patients' experiences, including healthcare staff smiling more and showing empathy, while remembering that the numbers they work with represent people's lives.
Meanwhile the Ministry of Health and Medical services says rheumatic fever is caused by streptococcal, or "strep" bacteria and is most common among children aged 5 to 15 years.
Health experts say repeated episodes of rheumatic fever can damage the heart and lead to Rheumatic Heart Disease.
They say maintaining good hygiene and a clean living environment can help prevent rheumatic fever, and are encouraging people to seek medical attention promptly if they develop a sore throat or skin sores.
People living with rheumatic fever receive regular benzathine penicillin injections to help prevent the disease from recurring and causing further damage to the heart.
Dr Kado says the participation of people living with RHD at the meeting had changed the tone of discussions, as policymakers and service providers were being encouraged to see the person behind the numbers.
He stresses that the principle of "nothing for us without us" should extend beyond RHD and be applied across the provision of services for all chronic diseases.
Dr Kado adds that many positive outcomes had emerged from the forum, with one of the most significant comments coming from a person living with RHD who said they felt safe and heard.
