Supporting Caregivers
Scott Williams, VP, Head of Global Patient Advocacy and Strategic Partnerships, EMD Serono, talks about the company’s efforts to recognize and support unpaid caregivers.
PV: What is the Embracing Carers program and EMD Serono’s role?
Williams: Embracing Carers is a global movement to shine a light on the contributions that carers make to our healthcare systems and to society overall. We wanted to better understand their unmet needs.
What kept coming up time and time again was that no one was really focusing on the unique needs and the health and well-being of carers overall. That’s what we hope to take on with Embracing Carers. This isn’t just a company-driven initiative. We’ve joined with eight caregiver organizations from around the globe that have been strategic advisers and collaborators on this important effort.
We see our role as a convener and a catalyst to bring together stakeholders from across the healthcare ecosystem. We’re a galvanizing force and a uniter of organizations from around the globe that haven’t had a chance to come together to discuss the latest trends and opportunities for collaboration.
We began this journey with a summit in London where we convened the caregiver advocacy leaders from around the globe to see if there were areas of mutual interest across markets, across regions, and across boundaries. We helped to bring that summit to life and to have that initial conversation. After that summit, the caregiver groups wanted to join with us in a collaborative effort.
We are also helping to support organizations such as the International Alliance of Carers Organizations, which is an international umbrella organization that’s helping to drive awareness and provide support and education for carers.
More specifically, we supported the development of a tool kit that helped to foster the development of infrastructure in countries that didn’t already have carer support organizations.
Lastly, we kicked off this effort in collaboration with caregiver groups by supporting the International Carers Conference in Adelaide, Australia, the first week in October. We did so by hosting a breakfast at the conference for thought leaders to share best practices and learnings and discuss things that we can do collaboratively.
PV: Why is EMD Serono involved in this program?
Williams: As a key stakeholder in the healthcare ecosystem, we have a role to play within the system and need to take on initiatives like this. By being a key stakeholder, we can help to galvanize further support and invite other stakeholders to come together and join us in this effort.
PV: Do you have personal experience as a caregiver?
Williams: As a teenager, I suffered from a very serious condition that resulted with me being hospitalized for an extended period of time; subsequently I was then on antibiotic treatment for 18 months.
Through this experience, I saw the benefit of carers in my own life. My father was a caregiver for me as I battled this chronic condition. It was thanks to his dedication and support that I’m here with you today.
Now I’m a long-distance caregiver for my mother who suffers from multiple chronic conditions. I’ve been serving in this role for her for more than 15 years.
My personal passion and enthusiasm for this topic is symbolic of our workplace. EMD Serono and Merck KGaA have a commitment to patients. Our senior leaders rallied behind this effort and saw this as a way that we can make a unique contribution and bring value to society by addressing this unmet need that no one has focused on. Personally, I couldn’t be happier to see the leaders in our company step up in this way.
PV: What do you believe carers need?
Williams: Carers need support and better tools. I must admit, while I was going through this, I didn’t know where to turn. It wasn’t until I became a part of this Embracing Carers global movement that I began to understand that there was support out there for me.
I’ve been winging it for the past 15 years to support my mom, and what’s been so great about connecting with these caregiver groups is that they have wonderful tools, support, and awareness materials and mentor systems where I can go to for support for myself.
Carers also need the attention and focus within our healthcare systems. It’s the right thing to keep the patient at the center. But I know the unique contributions that carers make to the overall health and well-being of society; this focus within the healthcare system on carers is key.
PV: What are some important findings from the company’s Embracing Carers International survey?
Williams: We learned in our survey that carers are facing mental health challenges. Almost 50% report depression or feelings of anxiety and stress. This is something that we need to continue to raise awareness around.
Also, almost half of carers do not take the time to make doctor’s appointments and medical appointments for themselves. To me this is extraordinary, because they help to coordinate medical appointments and medical care efforts for others but they forget to do so for themselves.(PV)
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Embracing Carers Survey
49% of unpaid caregivers surveyed in the U.S. have feelings of depression with a similar amount (48%) feeling that they needed medical care/support for a mental health condition (e.g. depression, anxiety, stress) due to their role as an unpaid caregiver. Of these, 20% have not sought medical help.
45% of unpaid caregivers surveyed in the U.S. feel that their physical health has suffered as a result of their caregiver duties.
45% of unpaid caregivers surveyed in the U.S. don’t often have time to book or attend medical appointments for themselves.
41% of female unpaid caregivers surveyed in the U.S. feel being a caregiver has put pressure on their financial situation compared with 28% of male caregivers.
19% of unpaid caregivers surveyed in the U.S. feel their career has been negatively affected by their role as an unpaid caregiver — 20% of women compared with 15% of men.