Tony is not afraid of change. After a decade working as a nurse and playing an active role as the National student chairman for the Royal College of Nursing, Tony retrained as a solicitor and moved to Ireland (with a stint in the travel industry in between). Talking about the shift from nursing to running his own legal practice, Tony sees them as very similar professions – both involve ‘dealing with people with problems’. His experiences, in and out of wards and courtrooms, have helped shaped him as a highly vocal and passionate campaigner for nursing and patient safety.
While Tony has his own health problems – he has features of both type 1 and type 2 diabetes, or ‘double diabetes’ as his consultant calls it – it was his wife Rebecca’s ill health that first got him involved with patient advocacy as a former nurse. Rebecca received a misdiagnosis and doctors failed to pick-up breast cancer for 14-long months. Rebecca became a very vocal campaigner for patient safety after her misdiagnosis, appearing on TV and other media in Ireland and also acting as a World Health Organisation patient safety champion. Tony helped and supported Rebecca and their joint advocacy eventually led to recommendations that have changed cancer diagnosis guidelines in Ireland.
When Tony subsequently developed hydrocephalus – water on the brain – he sold his legal practice and moved to Oxford to access specialist care. That’s when he met Dr Garry Tan, a diabetologist at the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM). Dr Tan suggested Tony take up a role as a patient representative for OCDEM, and Tony has not looked back since. He’s played an active part in various discussions taking place in the Trust about improvements to diabetes care, including the Diabetes Quality Group formed by the Trust. In these discussions, Tony has an important role – to continually ask the most important question, ‘what do you think the patient would want?’ As Dr Tan said, ‘he acts as a constant reminder of why everyone is here.’ His efforts have had real impact on clinical care for diabetes within the Trust and he is now also acting as patient representative for other conditions.
Tony is humble about his Award. He’s not in this for the glory, but for what he can achieve. Tony is particular proud of introducing the concept of ‘nothing about us, without us’ to his colleagues. ‘I call doctors and nurses my colleagues because patients are part of the team. I see my role as one of a critical friend. I support my colleagues, but I also challenge them, which is the key to what patient representatives can do.’
There’s no doubt that Tony’s advocacy skills, honed as a lawyer in the courtroom and combined with his clinical knowledge after years working as a nurse, make for a formidable patient representative. He jokes that his complicated health history (he’s recently undergone cardiac and bariatric surgery) has given him a unique insight in almost every bit of the JR Hospital. But Tony insists you don’t have to have that background to be a force for change. However, one skill is essential – you can’t be intimidated. He stresses the importance of speaking out if you see something that isn’t right – it’s only by bringing these things to light that we can learn from mistakes and enact positive change.
But there aren’t enough patient representatives – ‘we need to be more visible and more vocal’. How to increase engagement between doctors and patients, in both directions, is a challenging question. Tony feels that not enough credit is given to patients. There’s a tendency for doctors to talk down to those they are caring for. He’s a big fan of social media and forums to help connect people living with diabetes and other diseases. He thinks clinicians should encourage these networks more, perhaps delivering webinars on the latest advances in research and care to these audiences. These online networks are a mine of experiences and peer support, which could be tapped into by patients prior to booking a GP appointment. ‘If we can organise ourselves on social media politically, why not medically?’ He encourages clinicians to share their research papers with patient groups and beyond, so everyone can better understand progress being made.
Listening to Tony speak so passionately about involving patients in clinical care decisions has huge relevance for researchers designing projects to help those living with chronic health conditions. Hopefully, ‘nothing about us, without us’ is a philosophy that more can subscribe to in future.