This week we bring the focus on the importance of communication between the team of health-care professionals and the patient during the treatment journey of pituitary conditions. For the pituitary condition itself this will include a team of specialists coordinated by the specialist pituitary endocrinologist. The team itself may involve a combination of neurosurgeon, ENT (ear, nose and throat) surgeon, a neuropathologist, radiation oncologist, neuropsychologist, endocrine nurse specialist and patient carers.
With the pituitary gland being the master hormone gland of the body, it is no surprise that any condition affecting the pituitary gland will have flow on effects on secondary organs resulting in what is termed the co-morbidities. Conditions such as osteoporosis, diabetes, sleep apnoea, infertility, lowered immune systems are just a few such co-morbidities that may be associated with a primary pituitary condition. Each of these conditions require diagnosis, treatment and monitoring in their own right and in the words of our own Australian Pituitary Foundation Director, and pituitary patient Malini Raj, she has seen every “-ologist” under the sun in the lead-up to her diagnosis of Cushing’s disease.
As a clinician I have seen the benefits of effective communication between treating doctors in providing the best care for patients. Effective communication affords more time spent actually consulting and treating patients, as opposed to time spent chasing reports, results and communications. As we would all want, accessing such information is layered with privacy barriers that take time to negotiate. The patient experience through this can be frustrating and at present, there is little the patient can do to make the process more efficient.
The Australian Pituitary Foundation, with the support of Recordati Rare Diseases, has created a resourced aimed at improving communication between the pituitary patient’s treating teams. The Patient Care Record is a patient folder designed specifically to provide a single point of communication in the hands of the patient. Each Patient Care Record will be individualised to the pituitary patient conditions with information sheets and guides pertaining to the specific condition itself. It is a resource to file all results, communications and important contact details, and provides the medical story from diagnosis, treatment and monitoring. It is our belief that supporting patients in this manner will improve their pituitary journey, and allow them some semblance of control at a time when everything feels out of their control.
The Patient Care Record will initially be launched through the St Vincent’s Hospital Pituitary Clinics (Melbourne & Sydney) for new patients. If you or any other patient you know would be interested in accessing a folder, please contact us directly through firstname.lastname@example.org and we will liaise with your endocrinologist to make it available to you.
Keep safe and kind,