Why it’s time to move “beyond the voices” in schizophrenia treatment and care
I wanted to dedicate my first ever LinkedIn article to a topic that really matters. Since joining 勃林格殷格翰 a little over two years ago, I have met many people with schizophrenia, caregivers and representatives of mental health advocacy groups that have helped me better understand the ins and outs of living with this condition. I have learnt that schizophrenia is a multi-faceted condition that affects not only peoples’ health, but also their ability to work, thrive, and pursue important lifegoals. Hearing more and more of these very personal, first-hand experiences also made me realize that our general perception of schizophrenia in society is mostly shaped by inaccurate or misleading portrayals in movies, sensational media articles or hearsay. People with schizophrenia are often reduced to their symptoms such as psychosis, hallucinations or erratic behaviour, which in turn has led to a significant degree of stigmatization, scaremongering and fear associated with this condition.
Therefore, I thought it would be worth using this space to bring some attention to an important piece of work that the European Brain Council developed, with an educational grant from Boehringer Ingelheim, and has published earlier today – The “RETHINKING Schizophrenia: Beyond the Voices” Report. What sets this Report apart is that it is entirely based on lived experience testimonials from all over Europe, painting a rich and diverse picture of what living with schizophrenia truly feels like, “beyond the voices” haunting peoples’ minds stereotype which this condition is often incorrectly reduced to.
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In conclusion, I think the European Brain Council has done an excellent job in elevating the voice of the patients themselves to help us move past the stigma and start off a broader conversation that looks at the individuals’ needs more holistically – beyond stabilizing them in the acute stages of psychosis and delusion.
What I would like to leave you with is this question: What is it that we should concretely do to start to bring about that change, how can we change current treatment and care plans in such a way that they go “beyond the voices” and actually enable people with schizophrenia to thrive, to take back control of their lives and to relieve the burden on caregivers?
Independent Patient Consultant working at above-disease level | Patient engagement | Patient advocacy | Plain language | Health technology assessment | Strategy | Thought leadership | Public speaking | Training
11 个月Worlds collide Stephanie Kramer
MPH Student at Colorado School of Public Health
11 个月I have lots of thoughts! Recently, I wrote a paper on schizophrenia in Black people for my mental health class in my mph program. I'll try to be succinct. While researching this topic, I learned that Black people are disproportionately diagnosed with scz compared to their White peers. Not only diagnoses, but treatment is disproportionate as well, where providers tend to overly prescribe high dose, first gen antipsychotics to Black people compared to White people. The AMA treatment guidance on scz lists medications first, which to me tells me that is what's seen as the gold standard. But even that guidance mentions this program NAVIGATE, which is like a holistic approach, and lets the patient and their provider work together to decide which treatment plan is best for them. And a pilot study in Ethiopia was testing the feasibility of a community based rehab approach, again, a more multi-faceted approach. Some studies I found suggest that SDOH has a role in developing scz. (And systemic and continued racism could have a role as well). I would say more culturally relevant research is needed. Focusing on addressing some of these root issues, that could lead to prevention/minimizing symptoms. Research on these other approaches.