For a few months now RST has been a partner in a project to try and identify the top ten questions that YOU want the research world to try and answer. Our Co-founder Andy has also been part of the steering group of this project. With months of questionnaires, processing data and lots of hard work by various people, it was a great experience to be part of. The climax of all the hard work was a workshop, held at Stoke Mandeville, where a plethora of people from different aspects of the SCI world came together to agree the final top 10.
Our good friend Christa Dyson, who is a SIA Trustee, mentor and all-round champion for the SCI community wrote a brilliant blog on the day and with Christa’s permission, we have hijacked it and put it below for your reading. Incidentally, there is also a link at the bottom of the page to Christa’ s blog, where you’ll find a selection of good reads!
The research priority setting workshop for spinal cord injury fell on an auspicious weekend in the British sporting calendar. Christa believes it bodes well for future success as preparations to publish the Top 10 results get underway.
It was a weekend like no other in our national calendar. Cycling, tennis and fast cars gripped the nation’s interest. Catch-up TV viewing was essential to follow all the action.
The Tour de France sped off with the first two legs being staged in some of Yorkshire’s finest scenery. Yellow sheep, yellow bikes, MAMIL’s* and millions more lined the dry-stoned northern roads to watch the peloton speed by. It was British cycling history in the making despite its French connection.
The Wimbledon tennis finals were battled out in thrilling style. Lawn tennis was played at its best to a star-studded centre court audience. Against the international renowned green backdrop the first few serves were administered with alacrity. The challenge for who would raise the coveted trophies began.
Silverstone did not fail to impress either. It offered a memorable British Grand Prix. Pole position places all changed with adrenalin rushing drama following a qualifying round challenged by Blighty’s weather and a death defying crash.
It too was a historic day for the spinal cord injured community. It was the weekend when the spinal cord injury priority setting partnership (SCI-PSP) final workshop was held.
Saturday marked the day when after months of data collection, sifting, sorting and the preliminary ranking of research questions, stakeholders met to battle out their winning priorities for research.
Clinicians, healthcare professionals, carers and patients across the spectrum of spinal cord injury were represented on the day. We met at the Postgraduate Education Centre at Stoke Mandeville hospital. Any apprehension felt at the beginning of the day quickly evaporated as thoughts and expertise were shared.
Our moderators, Katherine, Sally and Dave, ensured fair play and called time displaying professional umpiring skills. Our observers, Alison, Anne and Claire, were there to independently witness all. Joost and Harriet ensured the day ran smoothly with necessary materials to hand and saw that refreshments and the catering went to plan.
Comparable to all the sporting events unfolding the length of our country that day, our personal favoured research positions on the leader board were fought for too. Some were won, others lost, just a few fell by the wayside not making the Top 10 cut; juggling and jostling was key. Tissues were offered and glasses of wine proffered, all in good humour, as questions rose and fell.
Personally I felt it important to arrive with an open-mind to the day ahead but I was challenged on arrival; living with a spinal injury always makes its presence felt. Spasticity, enabling environments and bladder issues quickly came to the fore.
The car park, barrier activated, makes access difficult with no hands. It is a test to remove the ticket from the machine. I have to exit the car, brace myself against it and pray that if I worry the ticket enough the machine will release its grip. Climbing back in to the car I accidentally knocked my weaker leg against the steering wheel. My leg went into an instant spasm.
Despite winning a ticket to raise the barrier I was going nowhere fast with leg locked against the wheel. Only time will ease my spasticity and barriers do not always remain elevated long enough for such eventualities. I’ve been caught out by that one before.
The postgraduate centre offered plenty of meeting room space for our task. What it did not offer were accessible toileting facilities. These were located in a neighbouring building. Instead, a tight cubicle space demanded all my concentration to enter these ‘ladies chambers’. Careful balance and poise was required to round the ‘china’ and still be able to close the door. Locking the door was not an option in case I remained entombed.
Nursing a mild bladder infection, as we spinal cord individuals are so prone to, I was reminded of the importance of living within an enabling not disabling environment, for I knew I would be paying frequent visits.
There is much that is assumed about our care and treatment options but so little that is known with any degree of certainty. I have been involved on the steering committee for this priority setting partnership from the early days and have seen the list of research questions take shape and grow.
There are few opportunities when such a fair and equitable process is available to have all voices heard, on a level playing field, and prioritise what is most in need of being researched.
It is very easy to be critical of why many questions that one might have expected to see on a list did not appear and why were there more of others. I suspect our partnership is not unique in this aspect. Some in our sector are a difficult bunch to reach out to.
Even a Top 100 would not cover all that needs to be investigated. One thing is for sure though our Top 10 is a robust representation of our many diverse issues.
As the day drew to its conclusion and final bids were heard, just as at Wimbledon and there is an approaching match point, quietness descended on our room. Temperatures had risen and not all entirely in heated debate for the main room had limited ventilation stirred only by a few fans. Still, all held their cool. The final placements were set, with an opportunity to merge a few questions agreed. It was mission accomplished.
Before the results are published there is some background work to be done to our supporting documentation. Once published, they will be proffered to funding researchers. The James Lind Alliance, who fostered this partnership and has many others, have a good track record of such priority research questions being investigated. My hope is that spinal cord injury will receive the same attention.
At the outset I was very involved in helping recruit partners and supporters within the patient sector to this partnership through charities and trusts. It is a well-established means of reaching out to those who have the most at stake and to garner their opinions.
The response was fantastic from the patient sector and, without giving too much away, it was clear the patient voice made its presence felt in our partnership. I could not be more pleased.
Thanks go to all who partnered, supported and believed in this process, for here I will confess that when recruiting I was never too certain how it was all going to play out. I just had a strong belief the process had the potential to make a significant difference to the spinal cord injured community. The best I could do was to communicate the potential of this partnership. You clearly understood.
The support was overwhelming from everyone involved.** Let’s now believe that the results will go on to make a difference. The very weekend we chose to host our workshop I feel certain will make for an auspicious start.
Vivre the partnership!
*A MAMIL is a ‘middle aged man in lycra’
** Steering Committee Organisation representation – Spinal Injuries Association (SIA), Cauda Equina Syndrome Society UK (CES UK), Transverse Myelitis Society (TMS), an Independent Carer, British Association of Spine Surgeons (BASS), Society of British Neurological Surgeons (SBNS), UK Spine Societies Board (UK SSB), Multidisciplinary Association of Spinal Cord Injury Professionals (MASCIP), British Association of Spinal Cord Injury Specialists (BASCIS) with support and guidance from The James Lind Alliance (JLA) and the Stoke Mandeville Spinal Foundation (SMSF).
Funding courtesy of the Oxford Biomedical Research Centre.
Partners and Supporters of this SCI-PSP – Aspire, Back Up Trust, The Rooprai Spinal Trust, Neurokinex, RFU Injured Players Foundation, Spinal Injuries Northern Ireland, Southern Spinal Injuries Trust, Prime Physio, Spinal Paralysis and Injuries Research Information and Training, Inspire, Regain, Spinal Research, Apparalyzed, Sportability, Viality and, of course, Focus Forwards!
For more information about this Spinal Cord Injury Priority Setting Partnership please visit: http://www.sci-psp.org.uk