The fourth and final evidence session of the Parliamentary Enquiry into Cerebral Palsy was held last Tuesday. Led by Action Cerebral Palsy and Chaired by Paul Maynard MP (to whom many grateful thanks), the final report is expected to be published on 27th January 2015.
The final session, in part, raised issues around the vexed questions of research and funding.
My interest, to declare it up front, is the education of children with cerebral palsy and the continuation into adulthood of the possibility for lifelong learning; especially for those who at school have or had a Statement of Special Educational Needs (now replaced by an Education, Health and Care Plan). By "education" I mean formal as well as informal education; schooling as well as upbringing. I am an advocate for conductive education (and know of no other articulated philosophy or practice of education for this group). In short, I am interested in how children with the most complex cerebral palsies become independent adults and active citizens.
Coincidentally with the 4th Evidence Session, I had the novel experience of having a contribution to a Facebook page removed by its owner, a teacher of many years standing, who declared that she could not "endorse a program on my Facebook page that does not have research to back it up".
Coincidentally, too, just a little while before the fourth Evidence Session, my attention was drawn again (the first alert, by Andrew Sutton, having been almost exactly a year ago) to "A systematic review of interventions for children with cerebral palsy: state of the evidence" Novak I et al in Developmental Medicine & Child Neurology Volume 55, Issue 10, pages 885–910, October 2013 and first published online 21 August 2013.
A "systematic review of systematic reviews", the study aimed "to describe systematically the best available intervention evidence for children with cerebral palsy". The authors were clearly aware of the interests of others, including policy-makers, and thereby the importance given to evidence-based policy-making in public funding of services; for instance, in explaining their use of "systematic reviews" rather than original research, they claim "Moreover, reviews limit bias which assists clinicians, managers, and policy-makers with decision-making about current best available evidence."
I have, in writing this, already resisted several times the temptation to say "Ah! Yes! But ..." preferring instead to leave that to subsequent posts - which is why the subject line of this post contains the number (1).
Instead, I want to draw your attention positively to what seems to me a most important general statement that also seems to me by-and-large both true and useful (no matter how variable in actual practice): the radical shift in perspective among clinicans, led by the World Health Organisation.
In the last 10 years, the field has adopted the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which has redefined the way clinicians understand CP and think about intervention options. From an ICF perspective, CP impacts on a person’s ‘functioning’, (inclusive of body structures [e.g. limbs], body functions [e.g. intellectual function], activities [e.g. walking], and participation [e.g. playing sport]), which in turn may cause ‘disabilities’, such as impairments, activity limitations, and participation restrictions. Moreover, each person with CP lives within a personalized environment and thus their context also contributes to determining their independence, comprising personal factors (e.g. motivation) and environmental factors (e.g. architectural accessibility). Thus, there are many potential problems a child with CP may face and seek intervention for. The field has chosen a philosophical shift away from almost exclusively redressing physical impairments underlying functional problems to adopting an additional focus on maximizing children’s environment, their independence in daily activities, and their community participation.
The emphases are mine. I cannot know, not being a clinician or one engaged in delivering health services, how far this "philosophical shift" has penetrated so as to impact on local services. What I do know, first and foremost as the father of a young woman with a complex cerebral palsy, is that the authors are correct to say that prior to "the last 10 years" the systematic emphasis in perspective, and indeed practice, was on "exclusively redressing physical impairments". And, most importantly from my standpoint in education, where the clinicians led so the educators and policy-makers nationally and in our town halls followed. So, local authorities (and our government) set up separate teams for those with "physical disabilities" from those with "learning disabilities".
I welcome, therefore, the "philosophic shift" which the authors have detected and report. I welcome, especially, the potential this brings for a shift in the perspective of policy-makers, one that is discernibly closer to my understanding, at least, of what conductive education is and "the many potential problems a child with CP may face" - not only the child but her or his parents with the child's upbringing and her or his teachers in formal schooling. Such a perpsective may even help conversations with our education policy-makers and commissioners in Government and the Town Halls.
With this optimistic opening, I turned to read this "systematic review". It turned out to be a dispiriting experience. Of which, later.