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Robert Cadzow, 13, with brother Adam, 13, and mum Frances, using a gentle postural care system to align his body shape. David Cadzow, Author provided

Poor posture in people with disabilities can be fatal

Maintaining good posture is not something we think about in our everyday lives. We perhaps take it for granted that we can get up in between computer sessions, have a stretch while making a cup of tea or roll over in bed. And while good postural care is important for everyone, it can actually be a life-saver for people with physical disabilities.

People with disabilities can develop severe distortions to the symmetry of the shape of their body. This, in turn, leads to permanent shortening of the muscles resulting in asymmetries. As these asymmetries become more pronounced they can have significant consequences for the person’s health and well-being. They can result in severe and chronic pain typically associated with twisted spine (scoliosis) or hip dislocation.

They can also have life threatening consequences, such as difficulty swallowing and breathing and increased risk of chest infections. These knock-on effects have a major impact on the individual, their family and carers, and the health service. For people with very significant learning difficulties, telling someone about their pain is really problematic. It often means that other people have to assess their pain – in the case of children it is often their mothers who have to assess and manage it.

There is also a growing but largely unrecognised population of people at risk from postural problems. Many people with dementia or who have had a stroke have limited movement, are unable to sit and spend long periods of time in bed and would benefit from postural interventions that prevent distortion.

A fatal issue

X-rays showing the deterioration of a quadriplegic cerebral palsy sufferer’s posture.

One young man with quadriplegic cerebral palsy, who did not receive good care, developed a severe twist in his spine which ultimately caused his death at the age of 23. Fred (not his real name) was limited in the amount he could move himself, and so he was forced to stay in one position for much of the day. Gravity pulled his muscles and bones down which caused a severe twist in his spine. This was not a quick process. You can see from his X-rays that Fred’s posture gradually deteriorated as he got older. Fred died of health complications which were the direct result of the dramatic changes to his body shape. His lungs were compressed and his pelvis was tucked up underneath his rib cage.

These dramatic changes to a person’s body are not inevitable. Fred, like many others, may not have died at such a young age if he had received good postural care in childhood.

Postural care is a gentle intervention that protects body shape before distortion occurs and reestablishes a more normal body shape once distortion has begun. The UK and Scandinavia lead the world in postural care but even in the UK treatment is variable around the country. People in some areas receive very good care while others do not. Preliminary results from a questionnaire developed by Changing Our Lives shows that people who received better postural care reported higher levels of general well-being.

Stanley Waugh, five, using a postural care system that protects his body shape. Rob Price Photography. Rob Price Photography, Author provided

Furthermore, people who were actively involved in developing plans to protect their body shape reported that their posture did not deteriorate as much as those who were not actively involved. This may suggest that when people are involved in creating their path to health – rather than just passively receiving plans from healthcare professionals – they are more motivated to carry out day-to-day postural maintenance.

Challenges and myths

Unfortunately, not everyone who needs support for their body shape gets access to support. Even if they do, it is not always tailored to their needs. The knowledge base and postural care skills of health professionals are often poor and there is a clear need for improved training.

There are also plenty of myths that can get in the way of promoting good body shape, such as that once you reach adulthood body shape won’t change anymore. This is false. Gravity continues to have an impact over time but changes in body shape can be corrected. The “no pain, no gain” mentality needs to be challenged because we now know that the best results come with gentle, respectful intervention.

It is also a widespread belief that people don’t need postural care if they can walk. But children and adults who may move well during the day may still adopt destructive postures at night and so need support.

Training programmes focus on identifying need, understanding how and why a person’s body shape changes, understanding the principles of 24-hour postural care, considering a person’s individual needs and being able to undertake physical assessments. These programmes can show positive changes in knowledge and confidence.

Postural care needs to fit into the life, desires and aspirations of the individual, rather than being a one-size-fits-all treatment plan. While sit-skiing may appeal to some people as part of their postural care plan, others may want to swim or sail or stretch.

Postural care for people with limited movement can make a huge difference to their quality of life by, for example, promoting sleep. It can result in reduced pain, reduce chances of hip dislocation and reduce the need for surgery and other interventions, which saves the individual unnecessary pain as well as saving the NHS money.

Good postural care provision across the country would mean that fewer people will end up with severely twisted bodies and health complications like Fred. Engaging people and their families in actively planning and executing their own postural care has genuine potential to improve lives.

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