Pathology as a true lifeline for survival
Pathology is the foundation for the clinical practice of medicine, paving the way to the appropriate diagnosis, management and treatment of diseases. In reality, every person relies on the work of a pathologist at some point in their life however, more often than not, patients don’t know how closely involved a pathologist is in their healthcare and the diagnosis and treatments of their conditions. For some however, pathology is something which has become an integral part of their everyday lives and a true lifeline for survival.
Like many others, Louisa Di Pietro has received life-saving pathology services on a regular basis for most of her life. For her, pathology is not behind the scenes, but rather a way of life:
“I have a very different perspective from those people who enter the health system once or twice in their life. My reference point is that I have a whole of life pathology services awarded to me as my human right in Australia. From my perspective, and from a life with a chronic genetic blood disorder where I received my first treatment at 9 months old, my entire life revolves around pathology services,” said Louisa.
Since the age of 9 months old, Louisa has received regular treatment for haemoglobinopathy, a term referring to a range of conditions which affects haemoglobin. This can include α-thalassaemia and β-thalassaemia, sickle cell disease and other abnormal haemoglobins, such as haemoglobin E (HbE). In Louisa’s case, her genetic condition is β-thalassaemia major, meaning her body does not produce sufficient haemoglobin. She therefore requires regular blood transfusions, ranging anywhere between once every three weeks to even weekly if she is acutely unwell.
“I receive a blood transfusion every three weeks, so if you consider the process of transfusion medicine for me then you will see that it is incredible. Prior to receiving the blood, I need to go to a pathology services, either in the hospital or in the community. I have a full blood assessment, including having my haemoglobin levels tested, and then I have blood taken for cross matching purposes, where a blood sample of mine and one from the donor are compared to try and get the best likeness possible. This has been the case for 49 years.”
“In addition, I need to receive safe blood which is not only matched to my blood type, but which also does not have any antibodies which can be very destructive. For me, what the RCPA and the health system provide around pathology, and specifically the protocols around blood transfusion medicine which require pre and post testing, is an absolute lifeline. They not only keep me alive but also they keep me healthy due to the processes which are in place to ensure I am getting a reliable, safe source of blood.”
Health service organisations have systems in place for the safe and appropriate prescribing and clinical use of blood and blood products. These National Safety and Quality Health Service (NSQHS) Standards were developed by the Australian Commission on Safety and Quality in Health Care (the Commission) in consultation and collaboration with jurisdictions, technical experts and a wide range of other organisations and individuals, including health professionals and patients. The primary aims of the NSQHS Standards are to protect the public from harm and to improve the quality of care provided by health service organisations.
There are a range of different conditions which depend on regular blood transfusions, including anaemia, cancer, haemophilia, kidney disease, liver disease, sickle cell disease and thrombocytopenia. For these people, pathology becomes a part of their day to day life, and many of these people owe their health and well-being to the hard work of pathologists.
““I belong to just one group of conditions – if you think of people with ongoing cancers, or leukemia, or the haemophilia group, it’s a huge population. These are all people with a chronic condition, an acute health condition where pathology is first line medicine. For those who are chronically ill, who have life-long conditions – pathology is a lifeline and is the one service that they rely on the most. It gives them the information needed to treat, and to provide health and wellbeing as safely as possible.”
“What we have in Australia is gold. I am aware of the gaps in services and I am aware there is unmet need for many of those engaged continuously with the health system, but in comparison to other OECD countries, we still have it very good. I believe that if you take an interest in your healthcare, and the processes around your healthcare, and learn that you have to manage it, then you realise that the system is not broken, the system is not horrible, it isn’t all bad and so much is delivered to us as part of our national health care system.”
In 2017, Louisa was inducted in the Lifetime Achievement Honour Roll at the 2017 Victorian Disability Awards. The achievement recognises Louisa’s decades-long advocacy for those with genetic conditions and rare diseases. She is the former Group Leader of the Genetic Support Network of Victoria (GSNV) and currently holds the education and advocacy strategy advice portfolio. Louisa is actively involved in professional and community engagement and sits on numerous professional boards and advisory groups within the genetic health space, and employs her professional and 'lived' experience/knowledge of managing a genetic condition to assist in the continuum of care delivered to Australians and in linking them in with specialised support/services and assisting advocacy efforts.
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This article appeared in the June 2019 Edition of ePathWay which is an online magazine produced by the Royal College of Pathologists of Australasia (http://www.rcpa.edu.au/Library/Publications/ePathway).
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