Dr Margaret Mayston
Associate Professor - Neuroscience & General Physiology, Div Biosciences (UCL)
The past year for most has provoked thought about what really matters in life and work, and a need to adapt to changing circumstances to adopt a new so called ‘normal’ way of living- whatever normal is! The latter question is commonly queried in scientific circles, and in the field of neurodisability.
The last century has witnessed a great deal of change in all aspects of life. In the early years of intervention for people with cerebral palsy, most health professionals approached intervention with a view that the goal for the person was to make the best of their residual function following the CNS lesion, a compensatory mostly motor-based approach, prescribed by the health professional. The next phase in intervention was to enable the person to be as normal as possible, (not ‘normal’ as some seemed to suggest; Rosenbaum & Gorter, 2011) with families taking more of an active role in the process or articulating and achieving set goals. Currently it is hoped that there is a more balanced approach of enabling the individual to participate in life, to the best of their ability based on what their damaged systems will allow, focusing on what they want and can achieve, as a collaboration between the person/family and the team of health professionals.
Over the last 40 plus years, the understanding of the pathophysiology underlying neurodisability has progressed, the repertoire of interventions has exploded, tools to measure function and plot progress have been emerging, and the revised International Classification for Functioning Disability and Health (ICF; WHO, 2000; 2007) has provided a framework for intervention and research focused on participation in everyday life. What do all these developments mean for the future of intervention for people with neurodisability? How can the challenge to provide evidence-based intervention be effectively addressed? How can the best be achieved? This is a journey, not a destination, for which there have been, and will continue to be, many important turning points. The challenge is ongoing.
This presentation is a reflection on the development of intervention for people with neurodisability, in particular those with cerebral palsy, based on personal experience, scientific knowledge and debate. Despite progress made in many spheres of understanding, I acknowledge that my most important teachers have been the children and their families, and I thank them for it!