Lack of juvenile arthritis specialists making diagnosis and care a challenge
Rohan developed a limp at 18 months. It took months to discover he had juvenile arthritis, one of the most common chronic diseases affecting Australian children.
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00:00 From the outside, Rowan Pennybell seems like any other six year old, but living with juvenile
00:07 arthritis means he's always in pain.
00:10 What I find quite challenging is running.
00:14 That equals 14.
00:16 Correct.
00:17 The first sign something was wrong came at 18 months old, when Rowan lost the ability to walk.
00:23 Despite multiple admissions to Canberra Hospital, the family was left without a diagnosis.
00:30 It took a visit to a paediatric rheumatologist in Sydney to get the answer they needed.
00:36 I think we just never expected that we'd spend a month in hospital and emerge with no answers.
00:42 And we didn't expect in the nation's capital that we'd have to leave Canberra to get a firm diagnosis.
00:49 And that's blue.
00:50 That was the first of many trips to Sydney for Rowan and his family.
00:55 He is unable to get the specialist care he needs close to home,
00:59 because of the total lack of paediatric rheumatology services in the ACT.
01:05 A fact the Juvenile Arthritis Foundation says is unacceptable.
01:10 I think these kids deserve better.
01:12 I think it's the inequity that really gets to me, the inequality of it,
01:16 and that there's sort of this systemic inequality in our system.
01:20 There is one rheumatologist in Canberra who can treat children,
01:24 but she hasn't been taking on new patients for years and is set to retire soon.
01:30 She told the ABC there was an easy and affordable fix -
01:34 more government funding to hire a part-time paediatric specialist to work in the public system.
01:41 The Health Minister has a different plan - to fly a specialist from Sydney to Canberra on a regular basis.
01:49 And then be supported by a nurse, an allied health professional,
01:53 a care team that can provide those supports for the family in between times when the specialist is visiting.
02:00 When that will start is unclear, but for families like Rowan's, it can't come soon enough.
02:07 [silence]