Got My Back! How are you sitting right now?

Are your feet flat on the floor, your spine straight and your elbows angled at no more than 90 degrees? Probably not –even as I write this I have my ankles crossed under the desk.

Whilst it’s important for everybody to sit correctly in order to protect their posture, it is especially important for people with neuromuscular conditions and other disabilities which impact their ability to move. Poor posture can lead to severe distortions in body shape. Whilst historically there has been an acceptance that body distortion is inevitable, this is not the case. Body shape distortions can have severe and life-threatening consequences including hip dislocation, spasticity, altered sensation, poor swallowing, additional difficulties with mobility and sleep. For more information please see this article in The Conversation (https://theconversation.com/poor-posture-in-people-with-disabilities-can-be-fatal-86251), which was jointly written by Changing Our Lives, Bernie Carter from Edgehill University & Sarah Clayton from Simple Stuff Works.

Postural care aims to protect body shape before distortion occurs and re-establish a more normal body shape once distortion has occurred. Postural care is a 24-hour intervention encompassing not just special seating and standing supports, but also night-time sleep support systems and other interventions. The aim of postural care is not only to protect body shape but also to ensure that each person has the best chance to engage fully in life.

Changing Our Lives has taken four videos about postural care to various schools across the country.  The videos, including a sit-skiing vlog and a poem written by young people, will be launched soon. We listened to teachers, disabled people, and their parents and carers about how good postural care enables them to have ordinary lives. We have also heard about how poor postural care can have a negative impact on people’s physical health, mental health, and their overall lives. These experiences will be included in a national strategy about postural care.

Changing Our Lives are also collecting information on the form of a postural care questionnaire. Preliminary findings suggest that not only is good postural care positively associated with quality of life, but disabled people who coproduced their postural care plans felt that their posture changed less over time, were less uncomfortable in their day to day lives and had higher levels of general wellbeing. They were also more satisfied with their postural care than those whose care plans were produced without them. We are continuing to collect survey data, so if you or someone you know has postural care needs, please visit www.changingourlives.org/postural-care-research-we-need-to-know to fill out an online questionnaire, or email ask@changingourlives.org and a copy will be posted to you.

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