The role of the Brain Cancer Care Coordinator (BCCC) continues to assist patients and their families on a daily basis to make this life changing and difficult journey a little more bearable. On that note of assisting patients, we would like to welcome back Sandy Nixon from maternity leave. Sandy is such an asset to the team and her patients and we have been eagerly awaiting her return to the role. We have been extremely lucky to have had and continue to have Alisha Gooley filling the gap for Sandy; in which she has done a wonderful job and has absolutely gone above and beyond for those she cares for. The role will be shared between Sandy and Alisha. Below is a piece written by both Sandy and Alisha providing some insight into their roles.
We are extremely fortunate and grateful to continue in this role and look forward to working together to provide invaluable support and guidance through what might be considered one of the toughest times during someone’s life.
The role of the BCCC for the Hunter New England Area Health Service (HNEAHS) is based at the John Hunter Hospital (JHH) in the neurosurgical department and is completely funded by the Mark Hughes Foundation. We tend to see patients not only from local areas but from all over the state as JHH is the next closest neurosurgical department between Brisbane and Sydney. The BCCC supports the patient and their families from diagnosis, through treatment, follow-up to discharge or end of life care.
The aim of the BCCC is to provide patient-centred care, advocacy, clinical advice, education, support, assess needs and make appropriate referrals and essentially bridge the gap between the patient and their specialists to ensure that complex needs of patients and their families are effectively managed. We tend to meet patients and their families on the ward as soon as there is any indication on a scan which might suggest a primary brain tumour.
We attend as many medical oncology and radiation oncology appointments as possible, and we work closely within the multidisciplinary team to develop appropriate treatment plans that tailor and suit patient’s lives as best as possible.
We are there from day one to educate, support, guide, advocate and be a pillar of strength for not only the patients themselves but their entire network of family and friends.
The role is essentially about bridging the gap for patients and their families between the medical specialists to make life even a little easier and from reports since the role has commenced, we are making a difference every single day. The BCCC role is now in its 3rd, almost 4th year running, and since its commencement, we have assisted over 450 patients and their families. We are in the process of capturing figures to further support our role and to identify what interventions and episodes of care we provide on a daily basis. In the past 12 months the BCCC has met with over 147 new patients diagnosed with a primary brain tumour. We have attended over 480 clinic appointments with patients and have made over 180 referrals to services such as social work, cancer council, emergency respite care, palliative care, psychology, occupational therapy, speech therapy, physiotherapy and other inpatient rehabilitation services. We have provided over 210 episodes of medical advice which quite often results in a patient not requiring presentation to an emergency department. We are also actively involved in supporting research such as biobanking, blood samples and whole brain donation. In addition, we also link patients to clinical trials across the country when deemed appropriate.
Our future vision is to see that all patients and loved ones across Australia are linked in with a BCCC and most importantly that all of the tireless dedication and hard work by the Mark Hughes Foundation and researchers will in turn result in a cure for brain cancer.
Sandy and Alisha
*This role has made such a difference to the lives of so many and MHF are so proud to announce that we have funded this position for another 3 years.