One of the most difficult things about having a rare medical condition is that I feel like a lesson for doctors. I've written previously about how I was involved in medical conferences as a child, and regularly take part in medical exams for dermatology registrars during my hospital appointments as an adult. I've moved from the role of patient to teacher now - educating dermatologists on their training days. I'm constantly explaining what Ichthyosis is, and what the condition means for me.
When I visit a new GP (when my regular one is away, for example), they are often unaware of Ichthyosis. Sometimes they can do no more for me than provide a medical certificate and a prescription for treatment that I've recommended. Or they are so fascinated with my condition they haven't been able to focus on the illness I'm there for.
It's often not practical for me to go to my specialist - which is hospital based, and only available in a clinic a few days a week. Of course, there's the option to go to emergency, but I don't fancy sitting there waiting for five hours.
It's important for me to have a good relationship with a GP, and for them to be knowledgeable about Ichthyosis, as well as putting that aside to give me advice about an unrelated medical condition.
It's pleasing to know the Royal Australian College of General Practitioners (RACGP) is committed to training GPs in specialised medicine. The RACGP ensures industry standards are set, and GPs are supported through continuous training to improve their medical care and knowledge.
The RACGP website lists over 1700 specialised training courses available to GPs - delivered face to face, online, blended learning environments and events around the country
A quick search for dermatology showed me there is a primary care dermatology course available - which is really reassuring for me, and other parents and patients affected by Ichthyosis.
A good GP was crucial for managing my condition when I was a child. I grew up outside of a rural city - bang in the middle of Sydney and Melbourne (each a five-hour drive away). There were no suitable dermatologists in the rural city, and while I went to the wonderful paediatric group, I couldn't see them all the time. And so my parents took me to the GP. I went there when I had colds and sore throats, but also for sore skin. My mum says:
"Although Carly was a very sick baby, we did not visit the GP often. She was in the care of a paediatrician until she was about 18. Most of her illness required specialist…i.e. ENT, Eye Specialists etc. We had a family GP who was great and we made a point to educate him about the Ichthyosis. When she did have to visit the GP it was either for fever/colds and flu. So our experience with the GP was not a difficult one at all."
When I was really little, I was playing in the park and fell on a tap - resulting in a big split of the skin above my eye. Mum panicked, not knowing what this would mean for my Ichthyosis, and she rushed me to the GP. They immediately knew what to do, fixing my face with butterfly strips.
I visited that GP clinic for years - and my parents still visit the clinic. Sadly, the main GP I saw - who still practiced until recently - passed away a few months ago. We all thought so highly of him, it's a big loss to the community.
Having a good local GP saved my parents from asking the paediatric group questions about illnesses unrelated to my skin. The doctors were mindful of my condition while providing the right treatment on each occasion.
I was chatting to some mums of kids with Ichthyosis, and it seems not much has changed. A good GP is still important for treating patients with rare medical conditions. Their comments emphatically said knowledgeable GPs are so important in remote communities.
Cheryle lives in rural Tasmania and has a two-year-old with Ichthyosis. The Royal Children's Hospital - where the specialist (and affordable) dermatology clinic is a plane or boat trip away - and a trip to the hospital can be very expensive when transport, hotels and food are factored in.
Cheryle told me how her local GP has gone out of his way to educate himself about Ichthyosis - including pharmaceutical treatment and interstate treatment options that might benefit her daughter.
"As a carer for a person with Ichthyosis who is too young to have her own voice, having the right fit GP has been invaluable both in terms of medical care and support. I've found my GP has become my medical Advocate for my daughter in a sense", Cheryle says.
"Our current GP has not always treated our family and it took some time to find one who is the right fit. We've gone from a once every 6 months to every second week and he insists if we feel like coming out to touch base with him otherwise he rings every two weeks. This offers me support and a chat with someone who understands."
"His advocacy and support is all I have in a small town where treatment and hospitals are a significant travel and a problem to a little girl who overheats."
Cheryle told me how difficult it was when the regular GP was not there and she saw a difficult GP - one who wasn't aware of Ichthyosis. Her daughter had a common cold, yet the GP lectured Cheryle about the child's redness and suggested Cheryl do more to relieve it.
Cheryle hopes that for GPs in rural areas, there is more incentive for them to train in specialised medicine. For a patient in Tasmania, the travel time, infrequency of transport and cost is prohibitive to seeing a specialist in a main city.
The RACGP website details the support rural GPs receive, including upskilling, grants and fellowships.
Melissa, whose nine-year-old daughter has Netherton's Syndrome (the same type of Ichthyosis as I have) told me about another GP success story.
"My daughter has been very lucky with doctors. Her Paediatrician had told me that there was a chance that she had Netherton's Syndrome the day she was born. He has always been a wealth of knowledge and if he needed extra information he reached out to her dermatologist. My daughter's GP is amazing and works hand in hand with her paediatrician. I will not go to another doctor unless absolutely necessary as I think another doctor will not really understand 9 years of treatments in a 10-minute consultation."
Knowing 90% of Australian GPs are members of RACPG makes me more confident in visiting the GP. The RACGP are responsible for their members professional development, setting industry standards and supporting GP’s by continually evolving and bettering their modern medical care and knowledge. GPs are specialists in whole medicine - knowledgable in 22,000 different illnesses as well as each patient's life history.
It's also such a relief for new parents of children with Ichthyosis - knowing they are supported and understood even when the condition is so rare.
(This post is sponsored by Royal Australian College of General Practitioners.)
Tell me about your experiences with a GP. Do they know about your rare condition? Do you spend a lot of time educating them? Have they suggested new treatments and provided additional support that your specialist hasn't?