PMLD Link Article December 2013

This article was published in PMLD Link in December 2013.  This journal is dedicated to promoting best practice and information to improve the lives of individuals with complex physical and learning disabilities.  You can subscribe to PMLD Link at

Postural Care – we’ve a mountain to climb and we’ve only just got our boots on!

My name is Sarah Clayton and I am a married mum with four wonderful children.  I grew up in a house in which Postural Care and protection of body shape dominated many things, the working day for both my parents, conversations around the dinner table and I’m pretty sure I was the only person in school whose friends had all had their body symmetry measured.  I began working with families supporting children who use Postural Care in the late 1990s and I have been addicted ever since.  At that time the concepts of coproduction, positive deviance and outcome focussed service provision, which I will go on to discuss, simply did not feature.  In 2007 my world fell apart when my eldest daughter Abi was diagnosed with a malignant brain tumour at just 6 years old, by the time we knew what was happening it had spread throughout the ventricles of her brain and down her spinal cord.  It has been a devastating journey for Abi but she, like her mother, is a stubborn little madam and continues to face every day with courage and humour.

The Postural Care mountain – where are we now?

Postural Care is a gentle way of protecting a person’s body shape.  Any person who finds it difficult to move or to change position effectively may benefit from Postural Care.  Changes in body shape happen silently, mostly when we are asleep in our beds, at a time we would imagine we and those we love were safe from harm.  The danger comes from gravity and so no matter what age the person is we must never lower our guard[i].  Ultimately body shape distortion is a killer, it is an enemy we must treat with the reverence and respect it deserves.

The Confidential Inquiry into Premature Death of People with Learning Disabilities[ii] was published in March 2013 and is a harrowing read.  The team recommended that adults with learning disabilities are “to be considered a high-risk group for deaths from respiratory problems”.  They went on to recommend that alongside access to seasonal flu and pneumonia vaccinations “…CCGs must ensure they are commissioning sufficient, and sufficiently expert, preventative services for people with learning disabilities regarding their high risk of respiratory illness. This would include expert, proactive postural care support, aggressive treatment of gastro-oesophageal reflux, the ready availability of speech and language therapists or other suitably qualified nurses able to undertake swallowing assessments, the development of clear clinical pathways for  gastrostomy insertion, and the frequent review of patients waiting for a gastrostomy procedure to protect them from risk of aspirating.”

I would like to introduce an analogy at this point as we start to think about Postural Care provision in the UK.  I have always imagined the ultimate goal, eradication of body shape distortion, as being the summit of a huge mountain. Just take a moment to imagine this goal, think about a world in which hip dislocation in young children is seen as the glaring exception and not an accepted norm, a world in which young people rarely undergo radical spinal surgery because they just don’t need to, a world in which people can get on and live their lives with minimal chronic pain and discomfort.  The view would be amazing wouldn’t it?

If we go back 25 years we can safely say that the vast majority of people did not even know this mountain existed but thanks to awareness raising work such as the wonderful 2010 Mencap campaign[iii] I hope that we have now acknowledged its existence and recognised its sheer enormity.  There is a sense now however that some service providers, despite their best efforts have become stuck in the foothills.  I am privileged to work both in the UK and overseas and I am struck by the common difficulties faced by practitioners who are working hard to improve outcomes.  There is frustration at the misconception by some commissioners that provision a piece of specialist equipment must mean an improved outcome.  It is as though practitioners have some of the tools they need “we provide sleep systems in this area” and they might be in possession of a map “we have a care pathway in place” but are they really striking out towards the summit and if they are what are their local commissioners doing to support them?  What do sufficient, and sufficiently expert, preventative services look like?  What are the key outcomes that they should aspire to achieve and, if a service is to describe itself as expert and proactive, where is the transparency and sharing of comparable outcomes with other service providers?

We will only ever reach the top together.

Postural Care is about making sure that people who are at risk of developing changes in their body shape are supported as symmetrically as possible, as comfortably as possible, 24 hours a day.  It involves equipment such as wheelchairs, walking aids, standers, alternative seating, orthotics and night time positioning equipment, it is helped by active therapy and encouraging movement and it is directed by measurement of body symmetry.  Most importantly Postural Care involves individuals, their families and personal assistants working alongside health and social care practitioners to coproduce effective, person centred solutions to often complex challenges.  Over the past 25 years we have come to understand how and why the body changes shape, we have developed incredible equipment and technology, we know that people need timely access to this equipment and have the Community Equipment Code of Practice Scheme[iv] but we have only just begun to grapple with the concept of coproduction.  Henry Ford is quoted as saying that “Quality means doing it right when no-one is looking” and this couldn’t be more true of Postural Care provision.  We don’t see amazing results because a therapist has a Masters level qualification or a Doctorate, we see amazing results when we enable, inspire, motivate and trust families and personal assistants.

Working in partnership with families, personal assistants and practitioners is for me the most exciting part of this journey.  The biomechanics, the equipment, the technology – they are all very interesting and helpful but there is nothing that compares to the buzz of seeing people succeed, of supporting a parent to fashion a solution that best suits their circumstances, of seeing a family whose happiness, health and wellbeing are inextricably linked to one another doing well.  It is this passion, this drive and this sheer determination that exists within families that practitioners need somehow to capture, to embrace and to nurture if we are to ensure that at 2am the pillow, towel or teddy bear is in exactly the right place.  Clair Lewis’s poem ‘Mother – Care’ gives a sense of this commitment and drive, here is an extract:

I am her MOTHER
her full time adorer
who explodes when she smiles
whose heart breaks when she cries
who worries constantly
and continually sheds
the tears which cushion her
ride through this mess
I’m here because I love her
how about you?
don’t compare my contribution
to what you do.

Clair Lewis

Positive Deviance and Outcome Focussed Postural Care

The concept of Positive Deviance is one that we as an organisation have embraced wholeheartedly[v].  There is a wealth of information about Positive Deviance available and this is not the place to go in to too much detail however, put simply, it is about looking for the people who achieve a better outcome than the majority when faced with the same problem.  In the UK we are actively searching for the services, families and organisations that achieve great results in relation to Postural Care and we are asking them two simple questions, what have you done and how have you done it?  My experience as a parent of a child that has undergone treatment for cancer has taught me what it is like to be supported by an outward looking team.  What do I mean by this?  I mean that the world of paediatric oncology is one in which a collaborative approach, a sharing and acknowledgement of better results, leads to improved services for children like mine.  The team supporting us as a family are constantly talking to, working with and supporting other teams from around the world to improve treatment outcomes.  It is a model that we as an organisation aspire to and hope we can support by sharing results from around the world.  A wonderful example of Positive Deviance can be found in Wakefield.

GMFCSGross   Motor Function Classification Scale 1 Children   who can walk, run, jump and climb stairs but who have some impairment of   speed, balance and/or coordination 2 Children   who can walk in and outdoors and climb stairs but have some difficulties with   such things as uneven ground or crowds3 Children   who use walking aids but use wheelchairs for long distances 4 Children   who use walking aids for short distances but use wheelchairs most of the time5 Children who use wheelchairs for all   mobility and need postural support in order to be able to sit comfortably Total   number of children and young people aged 0-18 supported by the service Hips   dislocated 75% Migration  over   75% of femoral head uncovered by acetabulum
Wakefield 122 106 46 274 0

Table 1: Outcome data for physiotherapy services in Wakefield district

There are a total of 274 children and young people aged between 0 and 18 who access the physiotherapy service in Wakefield led by Suzanne Carter, of these 122 have a Gross Motor Function Classification Scale (GMFCS) of 1, 106 have a GMFCS of 2 or 3 and 46 have a GMFCS of 4 or 5.  In answer to the question ‘What have you done?’ they have reached the summit.  Not a single child or young person accessing this service has a dislocated hip and in the past 12 months only 4 have undergone preventative soft tissue surgery.

The response to the second question is more complicated and can be found here but in essence they are wholly outcome focussed.  Over the past 25 years a culture of impunity has developed in which basic, person-centred outcomes are not being recorded, collated or shared.  If you want to know how successful a school is in teaching maths you don’t ask how many maths lessons each child receives – you look at the results and compare them with similar schools.   The work in Wakefield gives individuals and their families, commissioners and service providers a benchmark, surely if we are to see improvements in services we have to be asking each and every area what are their outcomes and how do they compare?

In Suzanne’s own words “This service hasn’t happened overnight, it has developed over the last 9 years to give us the successful outcomes of today. The important points to stress are that it is by giving the families some control and positive expectations for their children that go more than halfway to bringing them success. Also, this has been a result of long term, dedicated staff who are happy to work alongside each other to develop a service giving our children the right to expect these positive outcomes.”  Whilst Suzanne and her team have achieved a great deal working in partnership with families they are also very aware that their service is vulnerable to change, she continues to work closely with the local commissioning team to ensure everyone understands the outcomes they are being paid to deliver.

I come back to the idea of our mountain, of how far we have to go and of the summit.  25 years into the future we will live in a world in which hip dislocation in young children is seen as the glaring exception and not an accepted norm, a world in which young people rarely undergo radical spinal surgery because they just don’t need to, a world in which people can get on and live their lives with minimal chronic pain and discomfort.  They are already having a cup of tea and looking out at the view in Wakefield so if your initial reaction to this vision was scepticism this is an opportunity to reflect, a chance to reconsider what might be possible if only we were brave enough to look up.

[i]  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

[ii] Heslop et al: “Confidential Inquiry into the Premature Death of People with Learning Disabilities: Final Report.” Norah Fry Research Centre, March 2013

[iii] Postural Care Action Group

[iv] Community Equipment Code of Practice Scheme (CECOPS)

[v] The Postural Care Living University

About Sarah Clayton

I'm a married mum with four wonderful children - one of whom has additional needs following treatment for a brain tumour when she was 6 and a stroke when she was 9. We have to access lots of services but work hard to be as self sufficient as we possibly can. I've worked since the late 1990s to support individuals with complex disability and their families to use Postural Care.
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