March 2013 - Hunter New England Health - NSW Government

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Clinician opinion Palliative Care Research Calvary Mater Newcastle Conducting research in palliative care is imperative to ensure that people with palliative care needs receive quality, evidence-based care. It is important that regardless of whether or not a patient with palliative care needs is seen by a palliative care service, the patient will have the same access to evidence-based recommendations. Many people do not realise the difficulties involved in accessing medications faced by patients who wish to remain in their own homes. For people who want to receive palliative care at home, often they are unable to access or afford the medications they need. This is a particular problem for patients who are living lengthy distances away from specialist palliative care services. The use of medications to help maintain quality of life during the terminal phase is an important aspect of palliative care currently being addressed under the National Palliative Care Program. One of four key goals of the program is to improve access to palliative care medications in the community. The Department of Palliative Care at Calvary Mater Newcastle first became involved in clinical trials in August 2008; since then we have expanded in both the number of studies we are involved in and the number of designated research staff. Most of the clinical trials conducted in our unit are funded by the Palliative Care Clinical Studies Collaborative who were formed under the National Palliative Care Program. Supporting access to appropriate medicines to help maintain comfort and function during the terminal phase of a person’s life when people are being cared for at home is one the main focus of the collaborative. The research we do assists to gain the evidence to support the addition of medications to be listed on the pharmaceutical benefits for palliative care. This will allow a greater number of people receiving palliative care to access their medicines in the community at a more affordable cost. Naomi Byfieldt, Clinical Trial Coordinator and Conjoint Professor Katherine Clark, Director Love your work Annie Inder Nursing Unit Manager, Upper Hunter Community Health Tell us about your role. Can you describe a typical day Busy! Unpredictable! There’s no such thing as a typical day. Liaising with staff, clients and other service providers is part of everyday, as is reviewing and adjusting service delivery to meet the needs of our community and our organisational goals, while providing the best community nursing services possible. When and why did you decide to become a nurse and what have been the most significant changes you've noticed nurse unit manager, Annie inder After working as a legal secretary and becoming bored with an Arts degree, I decided training as a nurse (yes, hospital-based) meant I could learn useful information and earn money at the same time. I was attracted by the opportunity to make a positive difference in the lives of people when they are most vulnerable. The most significant change I’ve noticed in nursing is moving the focus back to the patient, with improvements in quality and patient safety. What do you love about your job/what do you find most challenging I love the unpredictable nature of my work, and I respect the expertise of the highly skilled nursing team caring for clients from pre-birth to earth and beyond. Most challenging is supporting and leading these wonderful people to juggle the demands upon them to provide the best care for the community, and implement services in an atmosphere of changing expectations. What would you say to someone considering coming to work for Hunter New England Health I’m really proud of HNE Health’s adoption of Excellence. I believe it has made a huge difference to the way we conduct our business. I feel privileged to be a part of our new culture and would encourage others who aim for excellence in healthcare to join our team. What do you do in your free time that helps you create a work/life balance I have a farming husband and four children who all keep me busy. I must read to keep sane, and wish I could see more movies (the closest cinema is 1.5 hours away). I need coffee with friends, and listen to audio books on the long drive home from work. I am partial to both focused and unfocused shopping, as well as compiling rosters and 90-day action plans. Work/life harmony… I’m working on it! 10
Kaleidoscope news Mothers support newborn testing for Fragile X Syndrome Hunter Genetics GOLD Service Genetic Counsellors Jackie Boyle_Louise Christie and Carolyn Rogers Fragile X Syndrome (FXS) is the most common cause of inherited intellectual disability, affecting one in 4000 males and one in 6000 females. Children with FXS do not have any physical features of the condition at birth, which means the diagnosis is often delayed until parents or health professionals become concerned about the child’s developmental milestones. In the first study of its kind in Australia, the Genetics of Learning Disability (GOLD) service at Hunter Genetics has found overwhelming support for newborn screening for FXS in postnatal mothers. Genetic Counsellor Louise Christie said worldwide, FXS testing is not currently included in routine newborn screening. In this study, mothers were offered the option of including FXS testing into their newborn’s routine newborn screening by testing DNA extracted from the ‘heel prick’ sample. “Newborn screening for FXS can provide an earlier diagnosis, alleviating the diagnostic odyssey for parents and allowing access to earlier interventions,” Ms Christie said. “It can also inform parents and extended family members of the FXS in the family and the option of future reproductive choices. “In Australia, the mean age of diagnosis is 5.5 years and many families have a second child before the diagnosis is made,” she said The study demonstrated a high uptake of newborn testing for FXS (94%) with 2000 male and female newborns tested. Even though there is no cure for FXS, mothers considered an early diagnosis as beneficial and wanted the information to prepare for a child with additional needs. More than two thirds of mothers wanted the information to assist in future reproductive planning. Mothers showed little concern that the testing could also detect carriers of FXS and the health implications for adult carriers. The research was undertaken in collaboration with the Department of Obstetrics and Gynaecology at John Hunter Hospital, the Department of Molecular Genetics and Newborn Screening Program at The Children’s Hospital, Westmead and is being published as a feature article in the American Journal of Medical Genetics Part A in February 2013. A smarter way to earn Something worth celebrating! Did you know you can salary package the cost of your next celebration As an employee of Hunter New England Health, this is just one of the many cost saving benefits available to you. Simply contact the Prosperity Salary Packaging team to find out more. For more information or to setup a no obligation consultation please call Prosperity Salary Packaging on 1300 761 388 or email your contact details to mail@prosperitysalarypackaging.com.au. T 1300 761 388 mail@prosperitysalarypackaging.com.au www.prosperitysalarypackaging.com.au hnehealth.nsw.gov.au 11
Page 1 and 2: HNE Health Matters Issue 81 March 2
Page 3 and 4: From Ireland to Moree, with no regr
Page 5 and 6: dow Project officer, Community Fall
Page 7 and 8: A fresh approach to saluting Excell
Page 9: Keeping kidneys viable Dr Paul Trev
Page 13 and 14: Volunteer profile Alysha Gill, Occu
Page 15 and 16: Social pics... The NSW Minister for

March 2013 - Hunter New England Health - NSW Government

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