The journey to becoming a patient safety advocate is often unexpected, born from personal tragedy and a profound desire for change. For Deb Hazeldine, this path began in 2006 with the devastating loss of her mother during what should have been a routine hospital stay. Her mother, admitted for physiotherapy, tragically died from C. diff, revealing a series of systemic failures and a heartbreaking lack of voice for families within the healthcare system. Deb’s powerful testimony underscores the critical need for healthcare professionals and patients to Learn Together, fostering a culture of transparency, accountability, and genuine partnership in care.
Deb recounts the agonizing months leading up to her mother’s death, marked by ignored pain complaints and dismissed concerns. Despite her mother’s persistent reports of back and rib pain during physiotherapy sessions, medical staff attributed it to a psychological barrier, urging her to push through the pain to regain mobility. The horrifying truth of preventable falls and fractures in her back and spine was only revealed after her death, hidden within medical notes. This revelation plunged Deb into “absolute despair,” a feeling of helplessness as she witnessed a system failing her mother while her valid concerns were disregarded. The absence of investigation and the dismissive attitude that her mother’s death was inevitable compounded the trauma.
The arduous journey for answers and accountability stretched on for years. Deb highlights the profound impact on her family, mentioning her daughter who was just twelve when her grandmother died and nineteen when the public inquiry into systemic failings finally delivered its findings in London. It was a grueling wait, emphasizing the glacial pace of systemic change and the emotional toll on grieving families. For Deb, a crucial turning point arrived years later when a lead investigator from the healthcare commission finally listened to her story, asking, “Debra, tell me what happened to your mum.” This simple act of acknowledgment, of finally giving her mother a voice, was deeply significant. What Deb desperately needed was an apology, a recognition of the systemic failures that had cost her mother her life.
In the aftermath of her mother’s death, Deb found a void of support for families navigating similar tragedies. She observed a system-centric approach, where investigations and processes felt detached from the lived experiences of grieving families. The lack of family voice and involvement in these processes was starkly apparent. It felt as though the most deeply affected individuals, the loved ones of patients, were excluded from conversations about what went wrong and how to prevent future harm.
A pivotal moment came with a contact from Professor Jane O’Hara, inviting Deb to contribute to a project aimed at improving patient safety. The invitation resonated deeply with Deb, representing precisely the kind of support and resources she wished had existed when her mother passed away. This marked the beginning of her active involvement in patient advocacy, driven by the desire to help other families avoid similar experiences.
Throughout her involvement in investigations and the development of patient safety resources, Deb found it profoundly moving to see families’ opinions actively sought and valued. This contrasted sharply with her own experience, where her voice had been unheard during her mother’s care and in the immediate aftermath of her death. The opportunity to contribute to a process designed to effect positive change was deeply emotional and validating.
Deb reflects on the potential impact of readily available tools and guidance for families navigating healthcare investigations. She emphasizes the empowering nature of knowledge, envisioning how access to clear information could have enabled her to hold healthcare providers accountable. Tools to highlight gaps in care, ask informed questions, and navigate complex jargon would have been invaluable. Without such resources, families are often left feeling lost and disempowered, unsure of what questions to ask or how to advocate effectively for their loved ones.
For Deb, “information is power.” She stresses that shared knowledge is essential for families to understand healthcare processes, participate meaningfully in investigations, and advocate for improved care. Over years of advocacy, she has witnessed the profound desire of families to be heard, to have their loved ones recognized as individuals, and to be actively involved in discussions about their care and any subsequent investigations. The core principles of honesty, transparency, and candor in healthcare, if implemented earlier, could have dramatically altered her personal experience and journey.
Deb underscores the importance of investigations in giving families a voice and facilitating involvement in the process of understanding what happened. However, she acknowledges that investigations alone cannot provide the full spectrum of emotional support needed by grieving families. This highlights the necessity of signposting to other support organizations within patient safety resources, recognizing that families require both practical guidance and emotional care. Deb emphasizes that individuals may not immediately know what kind of support they need in the initial aftermath of a traumatic healthcare event.
Drawing from her personal journey, Deb offers invaluable advice: “First and foremost, be kind to yourself.” She acknowledges the immense emotional toll of navigating these processes and validates the importance of allowing oneself to feel and express emotions without apology. She encourages individuals to ask questions repeatedly until they fully understand what is happening and to actively seek support from friends, family, or advocacy organizations. Deb’s message is one of empowerment: it is okay to ask for help, to express needs, and to actively participate in seeking answers and accountability.
Deb concludes with a powerful reflection on her years of solitary vigils, holding a candle and her mother’s photograph, uncertain if meaningful conversations about patient safety would ever truly begin. The fact that these conversations are now happening, that patient safety investigations are increasingly prioritized, fills her with hope. She notes the significant shift from a time when patient safety was a taboo subject to the present day where it is gaining increasing recognition and discussion. Honoring her mother’s memory, Deb chooses hope over despair, drawing strength from the belief that her mother is with her, supporting her advocacy work every step of the way. Her unwavering hope and dedication to patient safety serve as an inspiration, reminding us of the transformative power of learning together to create a safer and more compassionate healthcare system for everyone.
