We need to act now, not sleep on it

A few days ago we invited a few parents to attend a workshop on postural care. All the parents have children with complex health needs who use wheelchairs or mobility aids. Sarah Clayton from Postural Care skills  came along and talked to the group. Sarah and her parents have a passion about children and adults who have limited mobility to be supported to have as good postural care as possible. Sarah’s mother, Liz, is a physiotherapist and worked many years ago in a large institution where people spent very long periods of time unsupported in bed or in bean bags, or on mats on the floor. She saw how their body shape deteriorated over time and understood the challenges of trying to support people who were unable to use conventional furniture. She believed that people would have a better quality of life if they could sit in supportive furniture so she and her husband went on to develop the first multi-adjustable armchair and the first gentle sleep-system to ensure the person is protected and comfortable during the night as well as the day.

Neglecting a person’s posture during sleep has serious health consequences. For example, if a child is not supported during the night it can result in common difficulties such as dislocated hips, chest distortion and scoliosis (curvature of the spine). This can cause internal organs such as the lungs being squashed which in turn leads to respiratory disease and digestive problems. The Confidential Inquiry into the Premature Deaths of  People with Learning Disabilities recommended that local authorities need to be addressing postural care as a way to reduce respiratory disease. This is a call to action and I hope that more local authorities are investing more resources and time into this serious matter.

Schools and therapeutic teams spend  a great deal of time in sourcing equipment and applying therapy in the school setting and teaching parents how to apply it in the home setting, however what often is neglected is the care of the child during the night. Sarah informed us that children spend on average around 3600 hours in bed, and only around 1500 hours at school. That’s a huge discrepancy and yet as the child spends more of their time in bed we need to make a much greater investment in time and expertise in ensuring each child is properly supported in bed. Not having the right posture can also lead the child or adult to becoming disconnected with life. If you are unable to hold your head up and your seating is too upright for example it will affect learning and social interaction.

In some parts of the country there has been a seismic shift in the way services are held to account.  In Wakefield for example the number of children with hip dislocations have been dramatically reduced with a combination of – a focus on partnership working with families has been key to their success.

Most of the parents who attended the session had not been given advice about suitable sleep systems and had worked out themselves the best way to position their child through experience and their gut instinct. This is a disgrace and we need to act on this now. With an increase in the numbers of children with complex health needs reaching adulthood, and the research indicating that premature deaths in this group is often linked to respiratory problems, we need to make sure that families and those supporting them are made aware of the importance of therapeutic positioning.

 

 

Recent blogs by Jill Davies

• Looking for an ordinary life - 30 May 2014
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• Flashback to the 70's - 28 May 2013
• Supporting students moving to secondary school - 17 April 2013