Sarah who is a member of our How To Look Good twisted Fan Page on Facebook, wanted to share some news with us about a new project they are undertaking with another not for profit organisation Simple Stuff Works CIC - they are looking to support four young people to use therapeutic night positioning.

There is no cost to the individuals involved (they are setting aside just under £10k for the project to include all equipment)

About PosturalCare
We are looking for FOUR young people with idiopathic scoliosis to work with us on a fully funded project.

BACK TO BASICS is just that, we want to see what happens when we address a really basic element of a person’s day - the position they sleep in. Young people spend on average three times longer in bed than they do in school, if it makes sense to you to think about this time then please read on!

Back to Basics is a small, exciting project being funded by 2 Social Enterprises, Postural Care CIC and Simple Stuff Works CIC. Both not for profit organisations are well respected within their field. Postural Care CIC has worked since 2004 to develop nationally accredited courses in protection of body shape, measurement of body symmetry and the use of therapeutic positioning. In 2010 they were shortlisted for an Accolade Award, the very highest recognition for those working in health and social care. Their work with families supporting children and adults with complex healthcare needs led to a national campaign in partnership with Mencap

Simple Stuff Works CIC are an equipment supplier. As their name suggests their positioning system is simple, easy to use and transportable, it is recognised as the best in the market being the preferred system for flagship teaching hospitals such as Alder Hey Children’s Hospital. Simple Stuff Works won the British Health Trades Association Independent Living Design Award 2011

Postural Care CIC and Simple Stuff Works CIC are both experienced in supporting development of statutory provision of equipment and support, enabling people to access services based on need rather than ability to pay.

So… if our organisations are so good at what we do with the people we usually support, why do we want to work with people who have idiopathic scoliosis?

The answer to this is simple, we suspect that the conservative techniques used to successfully correct scoliosis in people with complex healthcare needs can be applied to those with idiopathic scoliosis. We make no claims to fully understand the causes of body shape distortion in this group of people, but we do know that the patterns of distortion are the same as for those with more complex disability. The techniques follow basic biomechanical principles and are easily understood by those using therapeutic positioning. The approach is gentle, non-invasive and its effectiveness can be objectively measured. We would like to work with a small number of people to determine whether our suspicions are correct, before we begin to work towards larger trials. Providing postural care to protect body shape is entirely complimentary to surgical intervention: it may lead to some individuals avoiding or delaying surgery; it will enhance results and prevent the complications caused by returning to damaging postures post operatively. Knowing whether this approach is effective will be beneficial both to those with idiopathic scoliosis and to the NHS who fund expensive surgical treatment.

What do we propose?
• An initial 2 hour consultation with our physiotherapist to include measurement of body symmetry (a fully validated and objective measure called the Goldsmith Indices of Body Symmetry). This is carried out by a female team of 3, all of whom are fully qualified in measurement and hold enhanced CRB Checks. Participants will need to wear shorts and a vest top
• An equipment assessment to determine what participants will need to take home that day
• Demonstration of how to use the positioning system
• Photographs will be taken throughout for the development of a personal profile for use when participants get home
• Re-measurement every 4 months for 2 years
If at the end of 2 years participants see no improvement in their curve they can give us back the equipment and we will go our separate ways. If however after 2 years participants are happy with the equipment and with the results they achieve the equipment becomes their property.
Conditions of participation:
• You must be between 12 and 18 years old
• Your scoliosis must be greater than 30 degrees and you should be considered a potential candidate for surgery
• You must not have had any surgical intervention
• You need to have a personal commitment to this conservative approach – we may need you to change aspects of your night position and this will only happen if you are prepared to work at it
• Your parent or guardian needs to be prepared to support you, both in terms of helping you learn to use the equipment and attending for measurement
• You need to agree to attend for re-measurement every 4 months for 2 years, you will also need to complete a short questionnaire each time you attend clinic
• Postural Care CIC will provide telephone, email, text or social media support as best suits participants needs throughout the project

Young people spend on average three times longer in bed than they do in school during the course of a year. Destructive night time positions have been shown to have predictable consequences in relation to changes in body shape. This project involves using gentle techniques to take advantage of this potentially destructive time. We are looking for 4 committed and motivated young people to take part in this project, it won’t cost them anything (the full cost of £2450 per person is being met by Postural Care CIC and Simple Stuff Works CIC) Please send completed application forms to Sarah Clayton, Postural Care CIC, The Sharratts, School Lane, Hopwas, Tamworth, Staffs, B78 3AD. Closing date for applications is the 10th August, successful applicants will be informed by email before the 17th August.

If you have any questions regarding the project please email or call 07729 552 626 (Sarah works mainly out of the office but if you leave a message she will get back to you as soon as she can).

Proposed initial consultation date: 28th August 2012

Useful references:
1. Hill, S. and Goldsmith, J., ‘Biomechanics and Prevention of Body Shape Distortion’, The Tizard Learning Disability Review, Vol. 15, Issue 2, pgs. 15 – 29, 2010
2. Waugh, A. “Protect Body Shape, Protect Quality of Life” ARC’s Changing Perspectives, Issue 4 - Health, December 2009
3. Goldsmith, J. Goldsmith, L. Hill, S. “Working Together to Protect Body Shape” Posture and Mobility, Volume 26:2, ISSN 1752-1629, December 2009
4. Hill, S. “Therapeutic Positioning: working in partnership towards tangible outcomes for children” Interconnections Quarterly Journal, Issue 6 July 2009
5. Hill, S. Waugh, A. “Body Shape Distortion: Promoting Postural Care At Night” Learning Disability Practice, 12, 7, 25-29, 2009
6. Goldsmith, L. Golding, RM. Garstang, RA. Macrae, AW. “A technique to measure windswept deformity” Physiotherapy, 78, 4, 235-242, 1992

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