Les's Story

Les Gray refers to himself as one of the “old dogs”. He’s been in chair for 43 years and has seen many changes in policies within the Burwood Spinal Unit and in the way care has been delivered to people with a SCI. Les thinks being involved in research means that he is taking part in the ongoing process of trying to improve the care of people who acquire a SCI since he believes that health professionals and researchers “only learn through shared experiences … that’s where they learn their lessons”. Les also sees being involved in research as give something back for what he has received. “It’s nice to know you’ve given something back”.

As an ‘early adopter’, Les was one of the first people to receive tendon transfer surgery. At that point he said he didn’t care about the risks. Instead he heard the surgery could give tetraplegics greater movement and strength and he “wanted in”. For Les the results were as positive as he had hoped for. “I wouldn’t be living by myself without hand surgery – it’s changed my life”. However Les also talks very positively about the value of ongoing research into the long term benefits of surgery. Upper limb surgery research allowed for the ongoing development of best practice for development of surgical techniques. For instance Les believes that this research programme led to the identification of secondary complications associated with tendon harvest sites. The researcher were also able to determine which techniques were working and holding up better over time. Les talks about how satisfying it has been to be part of this process, and especially in establishing the importance on post-operative rehabilitation in longer term outcomes, which has led to changed practices internationally. “If you don’t research what you are doing, you don’t know how well you are doing, or where you want to go with it”

The other research that Les has been involved with related to aging well with a SCI and explored issues that are becoming apparent as people age with SCI. This work resulted in a recommendation for a National SCI registry, which is currently being implemented.

Being involved in research has allowed Les to remain part of the greater process of learning. “I’m learning about what goes on with myself and my disability, and how it effects my daily living. But others are also learning from it.” He sees great value in health professionals being able to listen and to learn from the experiences of people living with SCI since “we are all on a learning curve together”. Learning to recognise the individual differences – in sensations, movements, abilities – means that health professionals can best “know how to best support people to find their potential and not their limitations”.

Les also believes that research needs to be relevant to the needs of people with SCI. Having people who live with SCI direct and/or provide feedback about the scope of the research is helpful as it allows for the research to remain relevant for people who have a SCI. “Research can become so narrow that it may not help many people. In the planning stage researchers need to ask why am I doing this and what is the research going to achieve in the end?”   Les appreciates finding out how the research has benefited others although he also recognises that there has been huge changes in practice over longer term even though it may be difficult to attribute changes to specific research that has been undertaken.