A word with … Dr John Leyden
What was it that got you involved as a consumer advocate?
It was my journey managing and supporting my late sister Kate during her time with a pancreatic neuroendocrine cancer that inspired me. For five years we navigated a health system that was unprepared to provide a young woman with a rare cancer the medical and psychosocial support and treatment that we have come to expect for more common cancers.
Utilising my medical knowledge and immature advocacy skills we were able to access treatment and support that prolonged and improved the quality of her life. This positive experience of health consumer activism inspired me to share and promote the role of ‘well equipped’ health consumers as a part of the solution to improving the delivery of healthcare.
“One might consider it a little ‘odd’ for a health provider to be a passionate health consumer, but I consider it to be a perfect fit.”
You played a part in the inception of HCNSW as the peak body for health consumers in NSW. What makes you so passionate about working with health consumers?
I was lucky to have known Betty Johnson, who approached me about assisting in developing the interim committee before HCNSW was formed. Being passionate is not hard when you are motivated by working so closely with consumers. I can’t work where I don’t enjoy, and I really enjoy my job. We have been working on Consumer and Community Participation (CCP) in the structure now for just over 10 years and we keep learning and changing and growing together!
The Unicorn Foundation, of which you are President, aims to raise awareness about neuroendocrine tumours. Rare by nature and overlooked by many in the medical community. Can you tell us more?
The Unicorn Foundation was founded on the principles of offering patient support and education as well as raising awareness and boosting research for neuroendocrine cancers (NET) in Australia. Over the last six years we have become the peak patient body for this rare group of cancers and have patient support groups nationwide. We also have a specialised NET nurse support service and a well-developed consumer advisory committee that represents and promotes the issues surrounding NETs and rare cancers. Our successes have been predicated on the continued engagement of our patients, families and carers.
How does working with HCNSW help you in your advocacy work?
I have been involved with HCNSW for a couple of years. During this time, I have made many friends, gained more understanding and knowledge about what a ‘health consumer’ can be, and hopefully contributed to improving the visibility and utility of the organisation.
This, in turn, has increased health literacy, health advocacy, policy development and the provision of equitable and high-quality healthcare for New South Wales health care consumers. A cause close to my heart.
If you could suggest just one read about consumer engagement to our members. What would it be?
Our NET patients are my inspiration to improve health consumer engagement and we owe them the opportunity to develop their skills and confidence in becoming potent advocates.
However, I refer to a quote from the surgeon Atul Gawande’s book: Better: A Surgeon’s notes on Performance to encapsulate my feelings about improvement and engagement in healthcare – “Better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try.”