The National Women’s Health Advisory Council will discuss the lived experience of women with healthcare injuries at its first meeting on Monday. Please share this petition or chip in to increase its circulation.
In December Vickie visited her local member, the Assistant Minister for Health and Aged Care and Chair of the new Council, the Hon Ged Kearney MP, to discuss the launch of her new charity for injured patients, FairCare Alliance and the need for injured patients to receive coordinated support and representation. In January, Sarah wrote to the Assistant Minister, raising two issues for consideration by the Council: the risks of corticosteroid drug treatment for women of reproductive age and the need for published data on women’s representation among those with healthcare injuries.
In early February Sarah received a reply from the Assistant Minister’s office: “I am sorry to hear of the challenges you have experienced and would like to thank you for sharing your story and collated research. Personal advocacy is an invaluable way to achieve change and I encourage you to continue to tell your story. A mechanism to support input from people with lived experience such as yourself will be discussed by the Council at its first meeting.”
In her email, Sarah had explained that her concern dated back to a severe healthcare injury 30 years ago, and said: “Corticosteroids are widely used as anti-inflammatory agents, particularly in the treatment of autoimmune disease. As you noted in your speech, 78% of patients with autoimmune disease are women. It is not commonly appreciated, by patients at least, that corticosteroid drugs are synthetic stress hormones; that they disrupt the natural regulation of the stress system; that excess steroid levels can have pro-inflammatory effects; and that excess endogenous steroid levels may be implicated in the onset and exacerbation of autoimmune disorders. This raises questions about the wisdom of using synthetic stress hormones to treat stress-related conditions including autoimmune disorders.”
The Minister’s Office responded: “Corticosteroids, like all medicines, have the potential to cause adverse effects. There are many well recognised adverse effects for corticosteroids as they have been used for a long time. Corticosteroids are used to manage a wide variety of conditions, usually for their immunosuppressive effects, and these benefits are considered to outweigh the known potential risks.
“The decision to commence a new medicine should always be made between the prescriber and the patient in the setting of informed consent. This should include weighing the expected benefits and potential risks of treatment for that individual patient compared with other treatment or no treatment.” The reply referred to the role of the Therapeutic Goods Administration in approving a drug for use, monitoring the safety of drugs once they are on the market, and providing consumer information.
Informed consent is not always a straightforward matter. As the example of corticosteroid drugs shows, both clinicians and patients may be unaware of the potential harm a drug may cause. In the early 1990’s it was not recognised that steroids could have direct pro-inflammatory effects. When a new understanding of a drug’s mechanism of action emerges, the scientific findings need to be promptly communicated to clinicians and consumers.
The second issue that Sarah raised was the lack of published data on women’s representation among those who suffer healthcare injuries: “It is vital that transparent and detailed data on the sex distribution of healthcare injuries is published, not only to identify those healthcare procedures and treatments that cause injury disproportionately to women, but also to identify treatments where the mechanism of action is incompletely understood to the detriment of women, as was the case with corticosteroid drugs.”
The Assistant Minister’s office responded: “You may be interested to know that the Australia Institute on Health and Welfare (AIHW) publishes data on hospital safety and quality. This includes data on Hospital-Acquired Complications and Potential Preventable Hospitalisations. More information on this can be found at www.aihw.gov.au/reports-data/myhospitals/themes/hospital-safety-and-quality . You may also wish to provide your views relating to healthcare injury data directly to the AIHW at: info@aihw.gov.auw.gov.au .”
It is encouraging that our voices are being listened to. But to achieve substantial improvements in patient safety and recognition of and compensation for healthcare injuries, we need widespread public support and support by key individuals in the healthcare and legal fields.
Please encourage everyone you know to sign our petition. If you live in Victoria, please join Vickie’s charity, FairCare Alliance. Governments always listen more to organisations that represent a number of people, rather than simply to individuals. If you can manage it, please donate to increase circulation of the petition.
With grateful thanks for your support,
Sarah and Vickie
Source of photo of Hon. Ged Kearney MP: https://womensagenda.com.au/life/womens-health-news/can-this-new-government-council-transform-womens-health/