Jo Southall is an OT who finds herself not only living with several rare diseases but treating them too – often in unconventional ways.

If you had to narrow down the list of the UK’s most interesting occupational therapists, Jo Southall would certainly be in the top ten – if not top five. Jo is a nature lover, a photography enthusiast, modern Druid and creative, all on top of being an OT. She also lives with hypermobile Ehlers-Danlos syndrome, and helps a wide range of patients, but her intimate knowledge of the workings and treatments of rare diseases means she finds many clients living with same or similar impairments coming to her for treatment.

Different medical bodies and countries define “rare disease” differently – some even refer to it as an “orphan disease” – but the European Commission on Public Health has defined it as a “life-threatening or chronically debilitating disease which [is] of such low prevalence that special combined efforts are needed to address them,” with low prevalence defined as fewer than one in 2,000 people.

With around one in 5,000 people globally living with Ehlers-Danlos syndrome, Jo certainly qualifies inside and out as an expert on rare disease. What then made her want to enter the world of occupational therapy?

“It was my experiences as a patient that swung it for me,” Jo told The OT Magazine. “I live with a couple of rare diseases myself! I’ve got hypermobile Ehlers-Danlos syndrome, and post-postural tachycardia syndrome, and I’ve been quite heavily involved with the Hypermobility Syndrome Association.

“I was struck by the fact that there must be a better way to do things, particularly with regards to fatigue. For example, a lot of the fatigue management services require people to travel sometimes quite long distances for a whole day of talking and writing note and things, and you come out of it completely exhausted, totally unable to remember anything you’ve done over the past day because it’s so exhausting.

“I sat down with myself, and it was as a second-year student I first had this idea, kind of tinkered with it, thought about it, dismissed it, and thought about it again. When I qualified I thought, I’m just going to go for it and see how it works out. It was really being a patient in various services that decided me on the fact that I might be a new graduate, but I do know what I’m talking about. I’ve done the referrals, and that combined with the OT training and research, really helps.”

Jo went straight from university into independent practice, a decision she spent a long time swithering over. She teaches coping strategies for long-term symptoms over video chat and finds a lot of her patients perhaps don’t fit in with NHS services, have found themselves with the wrong diagnosis, or are just sick of existing in a loop of constant re-referrals.

As an independent OT, she finds that there’s significantly more freedom in what she can and can’t do, with more scope for creative freedom and justification of what is and isn’t an intervention. “I try not to blinker myself to opportunities,” Jo said. “I have the opportunity to come up with creative solutions and be properly client-focused in the sense that if I need a session to run over by two hours, it can run over by two hours. It’s really nice to do, I think.”

Living with rare diseases is a massive contributing factor in Jo’s work. In her estimates, around 50% of her client base chose her as their OT because she lives with rare diseases, just like they do, and the ability to intimately understand their conditions, and not come across as patronising when she tells them that she understands – because she truly does. Many of her clients exist within a kind of symptomatic grey area. They may exhibit non-standard symptoms of MS or chronic fatigue syndrome, or perhaps they’ve not responded to traditional treatment. Because of her personal connection, Jo also sees many patients with hypermobility disorders, such as Ehlers-Danlos syndrome and Marfan syndrome.

Jo is unconventional in the sense that she provides her services over video call. Clients find her over social media, where she has a tremendous presence, and are referred back to her website. After conversing over email, their appointment will be carried out over Skype, Facebook Messenger or Google Hangouts – whatever the client is more comfortable with.

“There’s a lot less anxiety and worry associated with an appointment that’s taking place via Twitter or Skype rather than via an actual clinic that you’ve not been to before, where you’re reliant on someone else for transport,” Jo said. “For a lot of people, particularly for those with severe mobility impairments, they can’t do things like go to hospital on their own, so to access a service with me completely independently is really freeing and a really good confidence boost.

“Also, because I might have talked to them on twitter beforehand, there’s already a relationship before they’ve even seen me. They’re in their own environment which boosts confidence and makes them feel ‘at home,’ so to speak. Having spoken to me a few times before, they’ve seen bits of my life online, you kind of feel like you know somebody before you actually have to get to know them.”

Social media is a great resource for Jo. Clients may find her through Facebook or Twitter, where she’s currently keeping her followers updated on the cute little hedgehog she’s rescued. Her presence is social, friendly and conversational, allowing clients a deeper and more comfortable connection to her. When she’s not tweeting about her spiky friends, she’s running a Facebook group called DisabilOT, for OTs with disabilities to come together to chat and support each other.

“There’s a lot of us in there with a whole range of different physical and mental health impairments and overlaps between the two,” said Jo, “long-term and short-term stuff going on, as well as quite a lot of people who just wanted to learn more so they can support their colleagues better, which I think is great.”

Conducting interventions over video chat is only slightly limiting: for example, Jo of course can’t do measurements for equipment. On the other hand, it gives her a significantly wider reach. She’s been in situations where she’s been able to give recommendations to OTs who may not know much about a condition they’ve been asked to treat. She laughs when she says that everything she does is “all proper OT, traditional OT stuff, it’s just that I’m not in the same room as the person I’m doing it with!”

Visit her website to find out more about Jo, or join the DisabilOT Facebook group, Follow Jo on Twitter @JBOccyTherapy

Interview with Jo Southall from the Sept/Oct issue of The OT Magazine. 

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