In 2016 Changing Our Lives held a conference on postural care called Got My Back. Having worked with disabled people for many years and seeing that they were often left in uncomfortable positions with their spines twisted, we wanted to find out more. We started to work with Simple Stuff Works, a provider of postural care supports and training organisation, and when we gathered information and found that poor posture is not inevitable and there are many interventions that can be put into place to improve poor posture, we decided to gather like-minded people together from across England at the Got My Back Conference.

As a result of this conference, Changing Our Lives facilitated a national working group on postural care. This group has been working on a national strategy for postural care, highlighting best practice examples and making recommendations for the future, such as an agreed set of body measurements so people’s body shape can be accurately monitored. This group was made up of family members, universities, professionals such as occupational therapists and physiotherapists, colleges, residential care providers and equipment manufacturers. Disabled people also contributed their experiences and views to the strategy and their stories can be found in an accompanying document.

We are currently speaking with politicians from the three main parties to get their support, as well as a range of statutory and provider organisations. We will launch the strategy in late spring 2019.

The strategy and accompanying document made up of people’s stories is currently in draft form and can be accessed via the link below.

If you would like to find out more about this work, ask for Jayne Leeson on 0300 302 0770 or email Jayne at [email protected]

Fred's Story

The vast majority of people are born with a symmetrical body shape. Fred had a diagnosis of quadriplegic cerebral palsy and was able to move himself around on the floor. However, he did not receive good care, and developed a severe twist in his spine which ultimately caused his death at the age of 23. Fred was limited in the amount he could move, and so he was forced to stay in one position for much of the day. Gravity pulled his muscles and bones down which caused his chest to rotate and squashed his lungs and stomach. This was not a quick process. You can see from his X-rays that Fred’s posture gradually deteriorated as he got older. As Fred’s body shape worsened, it caused chest infections, swallowing problems and pain. Fred died of health complications which were the direct result of the dramatic changes to his body shape.

These extreme distortions to a person’s body are not inevitable. Fred, like many others, may not have died if he had received good postural care, such as a sleep system, a specially designed wheelchair or regular exercise in childhood.

Making people aware of good postural care improves quality of life and can, in some extreme circumstances, be lifesaving. Postural care support can include a wheelchair designed for the person’s needs, individually designed seating, a standing frame, night-time supports such as special cushions to help them sleep straight, regular exercise or active therapy programmes devised by physiotherapists or occupational therapists. Read the Postural Care Leaflet here.