Rheumatologists need to sing loudly and strongly in one voice to ensure our patients get timely and effective treatment “What do you do?” the pleasant taxi driver asks. “I’m a rheumatologist.” Silence. And then I explain what a rheumatologist does. There is some nodding, but I remain unconvinced I have enlightened her. Has that happened […]
Rheumatologists need to sing loudly and strongly in one voice to ensure our patients get timely and effective treatment
“What do you do?” the pleasant taxi driver asks.
“I’m a rheumatologist.”
Silence.
And then I explain what a rheumatologist does. There is some nodding, but I remain unconvinced I have enlightened her.
Has that happened to you?
The low visibility of rheumatology means many, if not most, people have no idea where we fit in on the medical stage. Is our specialty so dull or “beige” (with apologies to those who like the colour beige) that no one is recognising, let alone noticing what a vital role we play in improving the quality of our patients’ lives?
Perhaps rheumatology was a shade of beige when I entered the “wards” at University College Hospital, London in 1984, where David Issenberg, now a world leader in SLE and Joe Edwards, of rituximab in RA fame, were the quiet but formidable rheumatology senior registrars in our team. At the time, there were lots of patients, lots of diseases but treatment options were limited to say the least.
Perhaps it still was a little “beigey” in 1996 when, with my newly acquired FRACP, I established a public rheumatology clinic in Redcliffe Hospital. At that time, RA patients with awful “classic” RA deformities were still common. Many patients attended in wheelchairs. And I remember diagnosing AS in 30-something year old men with a history of up to 10 years of back pain, but also having to tell them that not much could be done to help them.
But now, in 2018, surely rheumatology should no longer be considered beige.
I currently live in a state where Dr Ranjeny Thomas and her team are trialling a vaccine for RA, with talk of cure.
Today, an AS patient, whose disease is unresponsive to the conservative regime of exercise and NSAIDs is finally able to sleep for more than four hours without being woken by pain with the initiation of bDMARDs. And now a RA patient can be in remission with as little as three months methotrexate monotherapy, as the medical profession as a whole has recognised the value of early diagnosis and referral in rheumatology, and the GP ensures a patient has access to specialist care in the “window of opportunity.”
Our specialty is at the cutting edge of clinical science. So why then does it appear rheumatology remains so low profile and largely under-appreciated.
Why does it have no “professional prestige?”
Even the word “cancer” is highly emotive. Very few other diseases evoke that same sense of fear and drama. So it is not surprising, cancer medicine is going to attract headlines and dollars.
But how have diseases such as diabetes and asthma, not really “light up the room” diseases, captured the attention of the purse-string holders while we as “arthritis doctors” appear to have patients considered as second-class citizens. Recently a non-metropolitan Queensland Hospital and Health Service (HHS) CEO referred to provision of specialist rheumatology services as a luxury.
Where has rheumatology gone wrong?
Maybe we are all so busy chipping away at the mountain of untreated or poorly treated rheumatological disease that we have no time to advocate for the patients, to fight to re-dress the inequity of access to care.
But we work in a specialty that is breaking down barriers in diagnosis and treatment. We make a difference. Our particular section of the profession has come so far and our patients’ lives have improved so much, rheumatology should be up front and centre in medical conversations and public interest.
How do we get rheumatology in the spotlight?
The EULAR initiative “don’t delay connect today” may be a start. (https://www.eular.org/)
We, as rheumatologists know all too well, if we can see patients in a timely manner – their lives, and those of their families, will follow a very different trajectory than if their disease is inadequately, inappropriately or even not treated.
Every month, I travel to Mackay in Queensland to conduct an outreach clinic. It is a 1000km plane ride. For a population of more 180,000 Australians there is less than 0.2 FTE rheumatologist.
Why? Because the health authorities do not think the provision of a rheumatology service is important. They consider it a luxury they cannot, or choose not to, afford.
Our patients deserve better than this. Rheumatologists need to sing loudly and strongly and together in one voice, to ensure our patients get the timely and effective treatment that we know will improve their lives. Where we are used to seeing beige, perhaps we should now see red.
The world of rheumatology is no longer one of simple anti-inflammatories, steroids, splints and allied health services. It is even moving past concepts of just treating to target and biologicals.
We are heading at a rapid pace into the future of personalised medicine engaging with the patient to find their optimal pathway forward for good health for them as an individual.
Rheumatology must change its image through a Gruen Transformation, to become the designer specialty we know it really is. We want the best trainees, the best researchers and the best clinicians fighting to be part of Team Rheumatology Australia.
Rheumatology patients should never be told specialist care of their condition is a luxury.
Arthritis Australia (AA) has the Health Minister’s ear. They have been given the opportunity to craft the National Strategic Action Plan for Arthritis.
Now is your chance to contribute but more importantly for you to engage with your patients to encourage them to raise their rheumatology voices and be heard.
Ask them to tell Franca Marine (fmarine@arthritisaustralia.com.au) what they think will make a difference. We know politicians hold the purse strings. We know they love their electorate.
Rheumatology must stop being invisible and start being bold, loud and strong.
For the sake of our patients: Be Beige No More!
Dr Claire Barrett is a rheumatologist in Redcliffe, Queensland working in public and private practice with outreach clinics to Longreach and Mackay
