At the Merlin MS Centre in Cornwall, Occupational Therapists and Physiotherapists using an ASI approach with clients with CFS/ME and other neurological conditions. The article below explains more about the postural challenges of this condition.
‘Mitigation of encumbrance symptoms’
Optimal management/treatment of the encumbrance-linked abnormalities outlined in this article and the supporting literature warrants further study (Rowe et al., 2014). At a minimum, avoiding the noted “common postural risk factors” (flexion/slumping) and intense/repetitive neuro-dynamic movement of sensitive neuromuscular tissues is advisable. The https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5314655/#!po=25.5208 special furniture/accessories may aid relevant behavior change e.g., rocking kneeling chairs/wobble cushions and vertebral support belts/braces.’
I am loving reading this book – it is a fantastic tool for therapy – working with my adult clients as we piece together their complex histories on that sometimes tricky journey to get a diagnosis. The book is written beautifully, with just the right anoint of science and evidence and not too much jargon – this makes it very accessible!
A must for the bookshelf of health and social care professional with adults with mental health difficulties. Especially important for helping us all contribute to the MDT discussions and helping make sure the signs of autism in women don’t get missed!
No one just learns to repair their complex modern car engine from a manual – you take it to a garage, they plug it in and carry out specific assured tests and then recommend a solution. I wouldn’t be happy if someone asked me to fill in a form about a weird engine noise before recommending a fix, or even worse a person trained to repair washing machine and not car engines fixed my car!
Today I was catching up on my phone calls and emails from earlier in the week. I have been asked to assess a young man and “determine his dyspraxia and his sensory needs” so that his parents can request in his EHCP that he has a special cerebellar rehabilitation programme (doing the social media rounds) to address his dyslexia and difficulties at school. It is a Sunday, I have had a busy week with few moments to spare, but I feel so passionate about this I cannot help but write this blog today.
My response remains …
“I am sorry, but I cannot assess your son knowing in advance it is to recommend this or any other similar programme. Here are my reasons, because this is what I do and how I do it.
I am an independent professional. Assessment is what determines my recommendations – so that what I suggest and recommend is because of the data I collect while doing the assessment, current evidence and my clinical experience and expertise.
I will ask for both you and your son’s views. I may ask you both to complete some screening tools – to understand if what I can offer is what you all need, and what will be the most helpful and effective approach right now. Then I will work with your son
I will be ‘hands-on’ and I will watch him playing, using the equipment, watching how he interacts with me because unless I do this, I don’t really know him and understand him. I won’t know what makes him tick, what will motivate him and how to support and encourage him when he struggles and the best way to help him celebrate his new skills and achievements.
I will collect information about him from relevant others; like his teachers and Paediatrician, and if something is missing, I will suggest what we might need and who to request it from. Ideally, I will use specialist assessments to assess him – and I have a few in my toolbox; standardised and observational. These will help me to understand, in minute detail, what might be going on in his mind, body, and brain – how his sensory systems work together and when they don’t work well, why. Some of these tests will tell me how he manages compared to others of a similar age, they will let us re-test again in future to measure progress, but most importantly, they will tell us about his unique strengths and skills. I will keep watching and listening until I understand all this information completely using modern neuroscience and recent research. I will do this so that I am clear we have made the right links and really understand how his difficulties relate to everyday life, and his difficulties doing all the things he needs to do each day at home and at school, with his friends and family. I will write a report with recommendations. These will be specific to his unique presentation and your individual circumstances. They will be done in conjunction with you and your son.
I will keep watching and listening until I understand all this information completely using recent and emerging neuroscience and research to inform my thinking. I will do this so that I am clear we have made the right links and really understand how his difficulties relate to everyday life, and how this impacts on the things he needs to do each day at home and at school, with his friends and family.
I will propose recommendations about how we might make his everyday life easier. I am not promising to “cure him”, but I will share with you the research that supports my thinking and recommendations. My recommendations will be specific to his unique presentation and current levels of motivation and be adjusted to take into account your individual circumstances. They will be done in conjunction with you and your son so that there are no surprises in what I write. My recommendations will tap into his motivation and help him understand himself, and it will respect his unique skills and special qualities, providing a place to start work that builds on his self-esteem and is not boring, dull or repetitive. As an Occupational Therapist, my focus will be on activities that support his functional skills, allowing him to be maximally independent, participating as much as he is able to.
Then I will write a report linking the assessment with our joined up plan – informed by my recommendations, adjusted by our experience of trying some of it out and adapting it until everyone agrees, and can sign up to the plan. These will be specific to his unique presentation and your individual circumstances.
We will have agreed the plan already and have consulted with others to make sure it can be workable at home, and school. Then we will agree on goals and ways to measure the outcome of what we put in place. We will consult with others to make sure these are specific and achievable.
It might sound like this might take a long time, but it is likely it would not take more than four face to face appointments, however more complex, older young people and cases with trauma may take longer, especially when they have low mood and poor self-esteem.
But the time it takes is worth it, as the plan is more likely to work when driven by his unique and individual assessment data, alongside the things that motivate him most. None of us wants work done on our car that’s random and without a proper inspection. If a mechanic diagnosed your car’s weird noise and backfires over the phone or from a form you filled in, and just sent you an engine part to fit yourself at home, with some vague instructions, what would you do? As a layperson with little skills, would you trust yourself to fix the car when you have no mechanical knowledge? And would it be fixed properly?
I am a healthcare professional. I have spent years studying the body and how the mind, body and brain connect and how they enable us to participate in everyday life. I have been schooled at University to think about activity, development and human psychology – to understand how to address my clients’ difficulties participating in everyday life, holistically, considering the whole person. To do this I had to learn and pass exams. Then when I graduated, I had to continue learning, even more advanced skills. I keep up to date with changes to brain science and motor learning theory and more, as well as taking any opportunity to learn from others. I have invested time and money in attending conferences and courses, and I spend time reflecting on what I do and how I do it, consulting with some of the best experts in the world when I get stuck on a tricky case.
Please do not ask me to assess your child via a phone call or paper tool and recommend something you read about on the internet. I will not support, advise, approve or give credence to something that lacks a robust evidence base. And, I will most especially never recommend something that is secret, where outcomes are guaranteed without knowing the person, and where you pay huge sums of money upfront for a treatment method that is private, members only, not allowed to be discussed and is protected and shrouded in mystery and intrigue. I hope you understand?