Jo Southall – Hypermobility Syndromes Association (HMSA)
I work independently in the Private sector but also volunteer with the Hypermobility Syndromes Association and within many chronic illness communities to provide online support.
My area of Practice: People with long-term health conditions. Especially those with complex medical histories. Commonly rheumatological, pain and fatigue conditions but often with overlapping mental health and autonomic/neurological issues.
Examples of assessments that you use: I’ve written my own initial interview forms and have left it at that. Many of the people I work with simply do not fit into the ‘tick box’ answers found in many assessments. A long discussion and an open ended series of initial questions is usually more effective for me to get the information I need and considerably less stressful and frustrating for my clients who are sick of ‘rating their pain from 0 to 10’.
Do you find a model(s) of practice useful – if so can you provide examples: The clients who seek me out are often those who have been failed by traditional healthcare, those who have been left to cope with a complex series of inter-connected symptoms because they don’t quite fit the remit for many NHS services. With people who so often fall through the cracks it’s doubly important to be truly client centred. As such my private practice aims to be as flexible and holistic as possible. I think it’s really important (especially with chronic and often misunderstood conditions) to really look at a range of factors, not just the biomechanical processes causing the symptoms. Sure, you back hurts but more important issue might be how you communicate your pain to your support networks. Have you had to change hobbies or work, does your bed make you feel better or worse. A thorough understanding of biological, psychological, social, environmental and cultural factors is essential. I probably can’t fix back pain but I can certainly make it easier to cope with.
Please provide some examples of the type of interventions you carry out: All of my interventions are done online. When people seek me out we usually plan and communicate via instant message or email. The actual appointment is usually done via video chat. We can both see and hear each other, I can keep track of subtle communications like body language or posture and we can maintain eye contact much like a traditional clinic appointment, this difference is that neither my clients or I need to leave our own homes. This is a fantastic service to offer for those who really struggle to leave home and travel to clinic appointments. I’ve been able to work independently with people on bed rest who would usually require a 5 person team to get to clinic.
My most popular service is a pacing masterclass, pacing is something that’s recommended for a huge range of symptoms but is so often not taught in detail. In 30 minutes of video chat I explain the basics of pacing, why it’s important, the boom and bust lifestyle so many of us fall into, tips for pacing common activities and we have time for a 10 minute problem solving chat on any activity the client really struggles with. Sleep Hygiene and joint protection courses are also available in a similar format.
On top of these I also specialise in flare-up planning. Flare-up plans are individual tables of coping strategies for coping with a range of symptoms. Especially useful when brain-fog strikes and you’re not sure if you’re supposed to lay down or run around to manage a headache. Aids and adaptations are often a crucial part of managing complex health issues so I also offer a personal shopping service.
My final service is a freestyle appointment. You know you need help with something but you’re not sure what to ask for, or you have a few little questions on a range of topics. This is the most flexible of all my sessions.
Do you use specific outcome measures? Please provide examples: Mostly I simply stay in contact via email to see how people are getting on. I also have a reviews section on many of my social media platforms where clients can share publicly what they really thought of the service!
Have you found relevant research to underpin your practice? Are there areas of research you feel are necessary? I pull research from a range of areas, since I work with such a range of conditions it’s essential to have a good working knowledge of most common ones. When I became an OT (having lived with a rare condition or two for years) I promised myself I’d never start an appointment with ‘I’m sorry I don’t know anything about your condition’. Many of the services I offer (like pacing and sleep hygiene) are core OT theories and as such are fairly well researched, the issue is whether it’s been researched with the particular client group I’m working with. Often a little bit of synthesis is needed to back up my approach due to the rare nature of my clients diagnoses.
Is there particular legislation, policy, guidelines that underpin your practice? For private practice I work within the HCPC and COT guidelines as any OT does. There is very little ‘other’ legislation I have to work within. For the most part, since I’m blazing my own trail within practice I work within my own parameters. My volunteering role does come with some additional legislation since the charity is Information Standard accredited. It’s doubly important that the information I put out is evidence based. Each case I work with is different so there will be occasions where policy and legislation come into things, this can be accessibility and house, court cases, disability and equality or something new.
Which other professionals do you work with? How do you feel occupational therapy has benefited your team?
I mainly work solo, I do have a network of other OT’s, physios, Doctors and alternative health practitioners who have an interest in Hypermobility Syndromes. This is a great resource to pull from when I’m in need of support from other disciplines or vice versa.
Anything else that you would like to add: