I received an email this week from a member of our spinal cord injury (SCI) James Lind Alliance Priority Setting Partnership (JLA PSP), identifying what research matters to those affected by SCI . Christa Dyson, who had a spinal stroke in 1993, wanted my help to publicise a research opportunity.
Every year, about 1,000 people in the UK have a SCI, leaving them partially or completely paralysed. Their disabilities, health and social care needs, short and longer term, are wide-ranging; most of those affected will be helped through rehabilitation in specialist NHS SCI Centres, which also provide ongoing community support.
But provision is patchy, pressure on bed space and other factors can cut inpatient rehab time, and while we can only be thankful for the medical and technological progress that contributes to longer lives for those with SCI, resources may be stretched thin.
We know very little about what it is like to live with SCI after leaving rehab, and how this impacts on people’s well-being and their need to access services over the longer term.
The Elizabeth Martin Bursary is being offered by the Spinal Injuries Association (SIA), itself a member of the JLA PSP steering group (represented there by two of its Trustees, Dave Bracher and Christa). The bursary is for research to investigate the social and medical impact of SCI on those affected after they leave rehab. The idea is to find out how well they reintegrate with society (or should that be “how good society is at reintegrating with them?”), what medical complications arise and any unmet needs.
On the SIA website, Christa’s biography explains “From being completely paralysed I went on to become an unsteady walker able to cover short distances though no hand function ever returned. I have all the other challenges that a SCI presents but as a ‘walker’ these often get overlooked. There is never a dull day.”
What an amazingly upbeat comment from a woman who must have had – and no doubt still has – to weather so much. How good it would be if we can help the SIA find a committed PhD student to learn more about what life for people like Christa is like, its challenges best addressed. Their call for applications comes just as our JLA work nears its conclusion.
If you or someone you care for – personally or professionally – has a SCI, you can contribute to the survey on research priorities, until May 31st.
Between the Bursary and the JLA work, we seem to be getting better at tackling the challenges of care-and the research that underpins it-through joined-up thinking. Christa’s own work is dedicated to “Mentoring, education and inspiration for people who are adjusting to life after a spinal cord injury or stroke” and her website www.focusforwards.com so wisely quotes Helen Keller, “Alone we can do so little; together we can do so much.”