Elena Sunderland. Photo: supplied
In the seven years that Elena Sunderland has been working as a specialist cystic fibrosis (CF) nurse, she has seen extraordinary clinical progress that has drastically improved the outlook for her young patients.
‘It’s very different now to what it was even five years ago,’ she says. ‘In 2021 a highly effective modulator therapy was approved on the PBS for patients 12 years and over with specific CF genetic variants. This medication targets the fault at the gene, which has led to significant clinical progress in patients, with older children experiencing improvements in their lung function and the younger cohort simply not becoming as unwell due to the earlier commencement of therapies.’
For Elena, it’s a wonderful place to be in her career, which has been devoted to paediatric care.
Having trained in the UK where nursing degrees are streamed into specialities from an entry-to-practice level, all of her training was in paediatrics with the exception of a four-week adult cardiac ward placement – which Elena remembers as being ‘horrendous’ as all the patients had C-Dif! She takes her hat off to all adult nurses as it was definitely not for her!
Following graduation in 2007, Elena initially worked in a neonatal unit but a desire to build long term rapport and to work with children and families experiencing chronic illness saw her transition to general paediatrics. After emigrating to Australia in 2010, her initial plan to travel never eventuated and Elena found herself in Melbourne working casually at the Royal Children’s Hospital (RCH), swiftly followed by RCH sponsorship and permanent employment.
‘We’ve got two kids, a dog and a family business here, so Melbourne is our home now.’
As she progressed through her classifications, Elena became a CNS, ANUM, and then nurse coordinator. In 2014 she became an advanced practice nurse in what is now the RCH Complex Care Hub, where she managed some of RCH’s most complex patients and their families. After a period of parental leave, Elena felt that it was time to take her career in a different direction and soon after secured a role within the CF team
Surpassing expectations
Elena took the job, which was initially a 12-month fixed term role created to address the hospital’s identified need to improve clinical outcomes for its CF patients. She was soon able to provide evidence demonstrating that the impact of her role was not only reducing current rates of decline in measurable parameters such as lung function, but was indeed improving them in the patient population – a significant bolster to long-term prognosis within the CF cohort.
As Elena says: ‘it surpassed any and all expectations that we had for the role.’
Following this success, Elena’s role became ongoing and she now works as part of a team of CF clinical nurse consultants (CNC) delivering high-quality, individualised care to their patient cohort. A review of the data around median lung function for CF patients indicates that RCH is now one of the top performing paediatric centres in Australia.
Elena reflects that the model isn’t complex – patients always received good care but a lack of continuity due to role definition opened up great opportunities for the improvements that have been implemented. Patients now have their own designated CNC – a crucial single point of contact who is an expert in their care, which has also led to improved access to clinical advice, earlier outpatient treatment and closer monitoring during periods of disease exacerbation.
Thriving patients
When asked how CF nursing differs from other areas where she has worked, Elena says it’s primarily about the longevity of the relationships that are built. ‘From the initial meeting of patients and their families at four to six weeks of age on diagnosis, the CNCs are then working closely with them until transition to adult services at 18 years of age,’ she says. ‘We are involved in every aspect of their care. It’s the CNCs who are contacted whenever there is a problem, which leads to great understanding between all parties that in turn enhances those close therapeutic relationships.
‘Several times a year we conduct transfer clinics with our colleagues in the adult hospitals, where our patients “graduate to adult care”,’ she adds.
Each of these transfer clinics is a celebration as the CNCs farewell patients they have known for many years, leaving RCH generally well and with aspirations for life far greater than those with CF in previous generations were able to dream of. It is, she says, ‘a wonderful feeling to see them going to university, meeting partners and having families of their own, which occasionally results in former patients returning to RCH as parents themselves of children with CF.’
Elena would like to acknowledge the wider RCH CF team, who have all been pivotal in improving clinical outcomes for our patients. ‘I work with an amazing bunch of people who dedicate so much to the care of our patients.’
