TRANSCRIPT
Thousands of Australians with arthritis are set to receive resources that could help them achieve better access and support as they navigate the health system.
Arthritis - a disease that affects one or more joints causing pain and stiffness that can worsen with age - affects nearly half a million adults and 30,000 children.
There are different types of arthritis.
Rheumatoid arthritis for example is a type of arthritis in which the immune system attacks the joints.
Cheryl Dines says rheumatoid arthritis has had a huge impact on her life.
"I was about 36 years of age. I'd had symptoms for a really long time so from my early teens, and it hadn't been picked but that's what it was. So by the time I got diagnosed at It was quite severe because it had gone unmanaged for so long. So after my diagnosis, I continued to work for a few years until it got to the point where I could no longer work. So rheumatoid arthritis has had a great effect on my life. "
Many adults with arthritis experience significant limitations in their capacity to work and care for others.
Many people with arthritis also suffer from conditions including back pain, mental health issues, and behavioural issues.
And in children, juvenile idiopathic arthritis has the potential to cause joint deformities and loss of vision if not diagnosed and treated early.
Dr Claire Barrett, President of the Australian Rheumatology Association says it can affect children of any age and diagnosis can be difficult.
"Childhood arthritis is a different disease from rheumatoid arthritis. There are several different sorts of childhood arthritis, but juvenile idiopathic arthritis, which is what the consumer care guide is. For parents, it’s very challenging because children as young as, before they're even one can develop the disease so they can't tell you that their knees are sore or swollen. But so if a parents notice that their child was limping, or had a swollen joint they shouldn't ignore it should liaise with their general practitioners as the first point."
Lynette Ahumnada's 12-year-old daughter was diagnosed at the age of one.
Ms Ahumnada wishes she had access to more information when she learnt of her daughter's diagnosis.
"I didn't even know juvenile arthritis existed. Unfortunately, I doctor googled, which is not a great thing to do. And I felt really alone because I didn't know anybody else that had children with JIA. We've also gone through a lot of medications as she was getting given certain medications her body would react differently to different ones. With that came a lot of trauma. There was a lot of work with the family and how to get her back on track."
Ms Ahumnada says her daughter's diagnosis also affected her family dynamic.
"It's a family disease. I call it a family disease because I also have an eldest daughter, she sees a lot of attention being brought to her, her younger sister, and that's what needs to happen because there's so much going on. And four, five years ago, my eldest looked at me and said, Do you love my sister more than me? Which was really hard. But as time goes by, it's one of those things where you learn to learn to deal with it. And as she grew up as well, she started to understand what is actually happening and the attention that Alianna needs."
The Australian Rheumatology Association says Australia is running low on arthritis specialists, leading to long waits to get a diagnosis.
Recent data from the Association shows 380 adult, and 20 paediatric rheumatologists are working in Australia.
However, the country needs at least 682 adult and 61 paediatric rheumatologists to meet demand.
A recent ARA workforce report also shows that 38 percent of rheumatologists surveyed were planning to reduce their hours within 12 months.
In response, Arthritis Australia and ARA has launched new clinical recommendations and patient care guides to help persons living with rheumatoid arthritis and juvenile idiopathic arthritis explaining what they can expect from care.
Dr Barrett says the care standards will provide a wealth of information to empower patients, families and health care practitioners on the management of the disease.
"The care standard sets out the expectation of what they should be receiving. So you should be receiving a holistic approach with a multidisciplinary approach. So if we can ensure that every patient with rheumatoid arthritis gets that multidisciplinary approach, then their quality of life is going to be improved. If they can all have access to psychological support and assessment their psychological health. If they can all have the vaccinations reviewed their bone health, their cardiovascular health. So these are all important aspects of the care standard."
Arthritis Australia’s chief executive, Jonathan Mithers says using the care guide can improve the quality of life of patients and hopefully reduce significant gaps in arthritis care.
"Everyone's journey with arthritis, with the individual disease is different. And if people have better information about how they can care for themselves and navigate the system, all the things they need and the things that they can get that will help them to have better outcomes for their diseases and these are chronic lifelong diseases that people have. It's not just, you know, something short. It’s a chronic disease, so they really need help and Arthritis Australia as a consumer-focused organisation is here to help them do that."
Ms Ahumnada says having the guide when her daughter was diagnosed would have been a game changer for her family.
She says it is a great tool and guide, especially for parents with young children.
"If I had this guide, when she was first diagnosed, it would have helped me so much because as I said at the beginning, I doctor Googled everything. It was terrible. I was on the internet. I didn't know anything about juvenile arthritis. I didn't know that anybody's child had juvenile arthritis. So if I had this guide, I would have had a lot of information and at the back of the guide, it actually we put for the different states, different websites or groups that they can be a part of that they can speak to other like minded families that are going through similar situations. And that would have been great to have back then as well."
But Professor Hills says the health sector should take responsibility and steps to enhance the number of rheumatologists to help with the overall patient quality of life.
"We also want to make the health services accountable for providing the best care. At the moment, there's very long waits to get into rheumatologist and that's because we have a shortage of rheumatologists. And if there was more training physicians, we could get more rheumatologists and that would actually improve the care particularly of newly diagnosed rheumatoid arthritis patients."
