Physios are taking the lead in improving the postural care of children with learning disabilities. Janet Snell reports.
Jenny Whinnett is certain that her son's life was cut short because of his poor body shape and the squeezing of his internal organs.
Craig, affected by severe physical and learning disabilities, had good quality equipment including a day-time standing frame, the right seating and good wheelchairs. He had surgery when he was 14. But nothing was done about positioning him at night.
Craig's story features in a series of short films (see www.mencap.org.uk/posturalcare) that are part of a campaign launched by the Postural Care Action Group to promote postural care.
The group's members include the CSP, Mencap, the Royal College of Nursing, the College of Occupational Therapists and, importantly, family leadership organisations such as Pamis and Partners in Policymaking.
The aim is to promote best practice and challenge the view that body distortion is inevitable.
Craig's parents feel that was the line taken by his orthopaedic surgeon who warned them that they were likely to lose their son at a young age. According to their recollections, they were offered no information or support on how they could extend his life.
By chance the Whinnetts heard that some families were using night-time postural care, but were told there was no funding for it in their area. So they decided to purchase it themselves.
Says Mrs Whinnett: 'Once we had gone through the training on protection of body shape it made complete sense to us. It was a real light-bulb moment. All parents and carers should be told about this.'
Unfortunately, all too often, they are not - though there are pockets of good practice such as Wakefield in Yorkshire.
Wakefield-based paediatric physiotherapist Suzanne Carter appears in one campaign film in which she stresses the importance of working in partnership with families.
She explains: 'There is no point in trying to impose things on families. They have got to understand what this is all about, appreciate the need for it and want to do it for themselves.'
Quality of life
The approach taken in Wakefield has led to the creation of a clear postural care pathway. Children referred into the service have a baseline measurement of postural symmetry taken. If it looks like there may be a problem, all the equipment they need is put in and follow-up measurements are taken at least once a year.
Moma Cooke, the district NHS senior commissioning manager, says that the service is now much more focused on early intervention and prevention rather than treatment.
'The cost benefits are significant as you are preventing surgical intervention for dislocations and scoliosis. Pain management is better so there are savings on medication. Of course the benefit for children and families is quality of life.'
Apart from one 19-year-old who was leaving the service at the time of making the film, not one child with complex needs in the whole of Wakefield had a dislocated hip. This, according to Ms Carter, is 'just phenomenal'. She adds: 'It's unheard of, really.'
Another pocket of good practice is north east Lincolnshire, where Sue Over, a superintendent physio working with adults with learning disabilities, helped create a post in postural care.
'We have done it within our existing service. We put in a proposal to the commissioner and got funding with a view to setting up more robust postural care services,' Mrs Over says.
'There is not a lot of research in this area so it's hard for commissioners. But we found using pen pictures and case studies can be very powerful for showing what can be achieved. Postural care is "embedded" in the whole service and has three strands: physiotherapy assessment and treatment, complex needs and health promotion.'
Previously, staff were able to put equipment in, but not to review it properly. Mrs Over adds: 'There has been a lot of interest in this from our physiotherapy colleagues from the stroke service, paediatrics and medical as it does have a wider application than learning disabilities.'
At the Shape Protection Service in Durham, staff focus solely on the postural care needs of adults with profound intellectual and multiple disabilities. Jenny Tinkler, clinical specialist in complex needs, is one of two band 7 physios working for Tees, Esk and Wear Valleys NHS Foundation Trust.
Ms Tinkler explains: 'I attended a workshop on The Family Centred Approach to Postural Care, which galvanised me into thinking we needed to be working in a different way.
'A colleague, Alyson Corkish, and I pulled together a business case for reconfiguring the physiotherapy service, so that we could provide a dedicated posture care service. We piloted it for 12 months and in that time we had 80 referrals. As part of our evaluation we surveyed carers and the feedback was very positive.
'Now the service is up and running I think the advantage is that Alyson and I can focus on ensuring consideration is given to protecting body shape 24 hours a day, including night time. To support families and carers we offer a range of training, from a short awareness session to a two day accredited qualification, led by a qualified posture care skills tutor. It's a very holistic approach.'
Meanwhile in south west England, great strides have been made in promoting partnership working. Rosie Yarnall is a band 7 physiotherapist and paediatric postural management lead with Cornwall Partnership NHS Foundation Trust, a job which she describes as 'pretty unique'.
'It's about as far from "silo working" as you can get. It's multi-professional, multi-agency and works across organisational boundaries. I sit in the paediatric community nursing team and work in partnership with community therapists, nurses, schools, families and carers.'
Families in control
The service relies on working in partnership with the heads of paediatric therapy and the health commissioners. With their support, Ms Yarnall has developed a posture management clinical competency framework, prescriber guidelines on equipment used in postural management and a Cornish postural care pathway.
Anybody can refer a child to the service, but all postural management assessments are undertaken with the child's named physiotherapist or occupational therapist present. Ms Yarnall does not carry a clinical caseload, but she does provide specialist assessment, advice support and education.
'Last year I took part in the Postural Care Skills national pilot study, which focused on putting families in control. I now deliver the organisation's accredited education programmes within Cornwall and so far I've trained over 40 carers.
'I'm currently working with Postural Care Skills on training 20 physiotherapists and occupational therapists using the Goldsmith Indices of Body Symmetry technique.
'For me the key to delivering good postural care is putting the family in control. They are the ones who know their children best. I help provide them with the skills they need so they can work in partnership with the therapists.'
The Goldsmith Indices were produced by postural care experts Liz and John Goldsmith, members of the Postural Care Action Group. Mrs Goldsmith is a physio whose 10-year-old grand-daughter's disabilities resulted from a brain tumour.
'We need to build bridges with families,' she says. 'Once they are properly trained they alone are expert enough to combine specialist knowledge with their encyclopaedic understanding of the person.
'They can make the best decisions about care as the person's condition changes from day to day. It is a long way from telling people what to do and branding them "non compliant". I feel privileged to support such expert families.'
Mrs Goldsmith says the philosophy of postural care is based on the belief that if an individual is to develop, he or she must be treated with gentleness and respect.
'If you try to make them do things that are beyond them it's just not going to work. Families tell us they worry when they see such things as guidelines for physios stating "a contra-indication for standing is extreme and uncontrollable pain".
'With our principles an individual should only stand if they are symmetrical (so that we can be sure that we are not damaging hips and muscle tone) and also only if they enjoy it!'
Talking to physios across the country it seems clear that although some areas are ahead of the game when it comes to embedding postural care into day-to-day clinical practice, others still have a long way to go.
One development that may prove a catalyst for change is the advent of personal health budgets. Physiotherapists, like other health staff, may need to consider the following question. Once families hold the purse-strings, will they want to commission the current service? It seems likely that in areas where individuals and families have not been involved in shaping the service on offer, the answer could well be 'no.'
What is postural care?
Postural care (or postural management) is a relatively new science developed over the past 30 years. It is a holistic approach that focuses on the 24-hour, 365-days-a-year physical management of a patient's condition.
The Mansfield checklist
The Mansfield checklist (developed by Posturalcareskills.com) is a quick assessment tool that anyone can use. If the answer to any of the questions is 'yes' then the child may well benefit from postural care:
- Does their body stay in a limited number of positions?
- Do their knees seem to be drawn to one side, inwards or outwards?
- Are their arms and hands in a position in which they could function normally?
- Does their head seem to turn mainly to one side - right or left?
- Does the body tend to extend backwards? Flex forwards? To the right or to the left?
- Is the body shape already asymmetric?
A One Year Postural Care Training Programme for the Workforce Supporting the Needs of those with Complex and Continuing Healthcare Needs: Project Evaluation. Author: Sarah Hill. Published by Postural Care CIC, 2011. To obtain copies, visit: www.paradigm-uk.org/articles/Evaluation_for_Skills_for_Health_/2834/92.aspx
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