Introduction
Picture this: An orchestra where each musician, whether playing a soft melody or a robust tune, contributes to a beautiful symphony, creating a harmony that fills the room with enchanting music. This delightful harmony is quite like the strong bond between healthcare professionals (HCPs) and patients, especially when managing a complex condition like Multiple Sclerosis (MS). Every person – the doctor, the patient, and the nursing staff – brings a unique note to the concert of care, creating a melody that’s both healing and supportive.
Research, such as that presented by Iedema R et all, tells us that when doctors and patients work together, sharing and listening, the health journey is smoother and often leads to better outcomes. Both the knowledge of HCPs and the lived experiences of patients are crucial to composing a healthcare plan that’s not just effective but also resonant with the patient’s life tune.
In the early days of the pandemic, misinformation was like an out-of-tune instrument, disturbing the melody we all try to create in healthcare. Recognizing this, I started the “BeWellWithMS.com” podcast. Initially intended to communicate clear and accurate information to my patients about vaccinations and COVID-19, this podcast transformed into a global symphony, reaching listeners in 25 countries, all tuning in to understand and manage MS better. I’m thrilled to say that our poster, which reflects this incredible journey through podcasting, is recognized and accepted by ECTRIMS, underlining the power of clear, honest communication in healthcare.
However, our tune doesn’t stop there. Providing care to nearly 800 MS patients as a single Neurologist posed a significant challenge. We needed to find a way to carry the melody of care right into the homes of our patients, ensuring it was accessible and welcoming to all. This is where Augmented Reality (AR) stepped in, providing an innovative solution that brought care into the home environment. Even without internet, our nurses ensure that technology reaches our patients during home visits, providing a virtual yet surprisingly intimate healthcare experience.
It’s charming how using AR sometimes makes me feel like I’m right there in the patients’ homes, discussing their care while being offered a virtual cup of tea. It’s more than just a consultation; it’s a friendly visit, where professional advice and human connection play a sweet duet.
As we look forward to future melodies, this partnership – each note from HCPs and patients creating a beautiful, empowering melody – will continue to evolve, grow, and hopefully, bring about even more impactful and harmonious healthcare experiences. Together, with every unique note, our healthcare symphony will continue to enchant, support, and empower.
Crafting a Dialogue that Resonates
n a situation where a patient feels their real-life experiences with MS are being overlooked or dismissed by doctors, a vital reminder emerges: open, kind communication in healthcare is essential. Medical gaslighting, where patients are made to feel unheard or disbelieved by healthcare providers, plays a significant role in their MS management experience. This issue is highlighted by Prof Gavin’s recent survey among people living with MS. The findings from 424 respondents, a vast majority being women (85%), signal a pressing concern: a pervasive sense of being unheard and invalidated.
In our recent MS group clinic, where a collective community buzzed with shared experiences and robust group communications, the power of inclusive dialogues was not just observed but deeply felt. The sentiments echo a need for crafting communication in healthcare that not just listens but also validates and believes.
In our recent MS group clinic, where a collective community buzzed with shared experiences and robust group communications, the power of inclusive dialogues was not just observed but deeply felt. The sentiments echo a need for crafting communication in healthcare that not just listens but also validates and believes.
Addressing medical gaslighting requires a melange of enhanced physician training in patient communications, recognizing the potential divergence between clinical findings and patient experiences, and implementing systems that ensure patient voices are not only heard but are integral in shaping their care pathways. From the shared narratives of forgetfulness and fatigue, despite clinically stable MRIs and neurological examinations, to the heartfelt frustrations of feeling unheard, it’s pivotal that healthcare providers (HCPs) orchestrate their dialogues with empathy, validation, and an unwavering commitment to explore beyond the clinically observable. Thus, striving to compose a healthcare symphony where every voice, note, and nuance is acknowledged, respected, and interwoven into the collective melody of holistic, patient-centred care. In this endeavour, our objective is to fortify a space where the potential dissonance between clinical evaluations and the patient’s narrative finds a harmonious bridge, ensuring not a single note of their health odyssey goes unnoticed or unvalued.
Conclusion: Orchestrating a Future Tune of Empathy and Innovation in Healthcare Communication
Navigating through the poignant symphony of healthcare, particularly in managing a multifaceted condition like Multiple Sclerosis (MS), the melodic resonance of harmony between healthcare professionals (HCPs) and patients becomes paramount. A concerto of communication that elicits not only clinical dialogue but also flows with the emotive, personal, and authentic experiences of each patient. Our journey into exploring the grave nuances of medical gaslighting, which silently yet significantly pervades the experiences of people with MS, underscores a vital reflection: the imperative of crafting a communication ensemble that respects, acknowledges, and validates every voice, every symptom, and every lived experience.
In the melody of solutions, digital interventions and authentic platforms of communication shine as noteworthy instruments. The “www.beewellwithms.com” podcast, originated amidst a crisis, sought to cut through the dissonance of misinformation and serve as a reliable melody of verified, empathetic information. With its notes reaching audiences across 25 countries, it illustrates that harmonizing accurate knowledge with empathetic understanding can weave a powerful impact across global dialogues on MS.
Augmented Reality (AR) steps in as another instrumental virtuoso, transporting care and connection into the intimate settings of patient’s homes, fostering an environment where healthcare does not merely imply management of a condition but resonates with the warmth, authenticity, and understanding of genuine human connection. Even within the comforting walls of their homes, patients find a conduit where their voices echo, stories resonate, and experiences find a tangible place in shaping their care narrative.
As we culminate this reflection and gaze into future compositions, the symphonic partnership between HCPs and patients will seek new melodies, exploring novel technologies and ensuring that the collaborative tune is ever-resonant with empathy, validation, and an unwavering commitment to patient-cantered care. Crafting a future where the healthcare symphony is not merely played but is co-composed with every patient, ensuring their voices, stories, and experiences are not just heard but become integral in orchestrating their healthcare journey. Together, let’s ensure the concert of healthcare echoes with the harmonious tunes of innovative solutions, empathetic dialogues, and a community where every note, from both HCPs and patients, composes a melody that truly heals, supports, and empowers. See you at ECTRIMS 2023 in Milan for more buzzing discussions!
Note: The infographics and descriptions are fictional suggestions to give you an idea of what visuals might accompany the article. Created by AI under my commands.
If this article resonated with you or if you believe it can inspire someone else on their MS journey, I encourage you to like, comment, and share it with your community.
References:
Iedema R, Greenhalgh T, Russell J, et al
Spoken communication and patient safety: a new direction for healthcare communication policy, research, education and practice?
BMJ Open Quality 2019;8:e000742. doi: 10.1136/bmjoq-2019-000742
ECTRIMS 2023: Medical Gaslighting in People with Multiple Sclerosis ECTRIMS 2023: Medical Gaslighting in People with Multiple Sclerosis (substack.com)
