Wednesday, 26 October 2016

Dysautonomia Awareness Month 2016 Guest Post Siobhan: The Need for Increased Telehealth Options for Rural Dysautonomia Patients.

Today's guest post for Dysautonomia Awareness Month 2016 comes from Siobhan. It's been great to read more submissions from rural patients this year. Living in a rural area patients face unique issues regarding access to care. As most regular readers know, like Siobhan below, I have to travel for the majority of my care as local specialists who are familiar with Dysautonomia are pretty much non-existent. Telehealth is one way we could improve this situation. I have a few doctors and allied health specialists who have been willing to conduct appointments via Skype or phone, but they are still in the minority. Having just read the stats on survival rates of rural vs metropolitan cancer patients it is clear that geography is a strong and sadly negative predictor of health across many conditions and part of that is due to access to specialist care from diagnosis to treatment. We have the technology to make the lives of rural patients easier, let's use it! (May be an area of personal passion). Thanks Siobhan for sharing your story. 


Siobhan is in her mid 20s and lives in country Victoria with her family, who act as carers. She put a promising career in psychology on hold to become a full-time sickie. She enjoys sewing and knitting to soothe her soul. You can read more from Siobhan at chronicallysiobhan.wordpress.com.

Imagine a day that begins at 4.30am. You drag yourself awake, get ready and race to the station to catch the train to the Big Smoke. After a 3.5 hr+ train ride, another obstacle awaits - navigating the city. For a rural dweller who is used to services a brief car ride away, the public transport and taxi services in the city can seem overwhelming. You somehow make it to your appointment in a far flung suburb, and wait a few hours for the privilege of spending 10 minutes with a doctor who tells you nothing you couldn’t learn over the phone. Now for the long trip back home, arriving at the station at 10.30pm. You are exhausted.

This seems like a big day for anyone. Now consider how it would feel being a person with a disability. Sounds like an impossible challenge - but this is the only option for treatment for many rural and regional patients.

Healthcare in the country is patchy at best. In my home town of Warrnambool, we do not have dermatologists, endocrinologists, and are soon to be without a single gastroenterologist. There is one private psychiatrist who charges $400 a session, no rebate available. We have only just opened a regional cancer centre in the past month. Before then, patients had to travel to Geelong and live in rented units for the full course of their treatment, which could be upwards of 6 weeks. The emotional and financial strain on such patients is immense.

For those who have complex and unusual diseases, such as dysautonomia, the situation is bleaker. Good medical care requires a relationship with a team that will understands your condition and will work to coordinate your care, from GPs to specialists, surgeons and other practitioners. But if specialised care is so far flung as to be administered hours away from your home town, the chance of a well coordinated management plan is slim. This is if you can find a GP who understands your condition at all - by want of being in the country, many GPs miss out on working and sharing knowledge with specialists who would otherwise be able to bring them up to speed on their patient’s unique medical conditions.

And as for those who cannot travel for treatment? I am such a patient, and have been for 6 years. For many of these years, I was told over and over again by doctors in town that there was no one, no one, who would consult with me over the phone. I was told I had to travel the 8 hour round trip to a specialist in Melbourne. Considering most days I couldn’t leave my bed, this was an impossible ask.

Luckily, I have found specialists in Melbourne who will consult by phone and Skype, and my health is much better for it. The prevailing attitude in the city is still that country patients should and will travel for appointments. I can only hope that medical professionals will increase their understanding of rural and regional patients and offer more flexible methods of treatment, such as Skype appointments, to meet their unique needs.


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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx