We all have a need, as patients, to expect and receive the best possible care. But to achieve this we must take an active part in our treatment programme and form a partnership with our doctor.
Our bodies are our own and, as such, we must speak up for ourselves, be our own self-advocates. We have to ensure we play a full part in decisions made about our medical care. Of course, doctors and other healthcare professionals have their role too. It’s just that our bodies are our own, and no treatment should be decided without our full understanding and agreement.
Bearing this in mind, I was delighted to learn about MS Path 2 Care. This is a free programme that helps patients, like you and me, to be more active participants in their healthcare.
According to an article by Mary Chapman, published by Multiple Sclerosis News Today, MS Path 2 Care is a collaboration between the Colorado-based nonprofit Can Do MS and Sanofi Genzyme, which markets MS treatments such as Aubagio (teriflunomide) and Lemtrada (alemtuzumab).
In that article, Mary wrote:
The Society for Participatory Medicine, a nonprofit that focuses on partnerships between patients and healthcare professionals, helped in developing the program.
MS Path 2 Care brings community together
MS Path 2 Care, launched in late 2017, brings together the entire MS community — patients, their families, healthcare providers, and national advocacy groups. Its primary aim is shared decision-making between patients, their suppport partners, and their healthcare team, with the goal of developing enduring bonds between patients and care participants.
The program’s website features four educational modules, each with videos highlighting the stories and perspectives of those affected by MS. They include “Understanding Your Healthcare Team,” “Partnering With Your Healthcare Team,” “Navigating the Healthcare System,” and “Strengthening Your Support Partnership.”
“At Can Do MS, we believe that it is critical for people with MS to be proactive and engaged in managing their own care,” Anne Gilbert, Can Do MS director of programs, said in a press release. “That’s why we are so excited by the launch of MS Path 2 Care, which provides information and tools that can help address a wide range of challenges.”
Personal experience has positive effect
Stephanie Buxhoeveden, co-director of Neurology Associates in Fredericksburg, Virginia, helped develop the modules. Diagnosed in 2011 at age 25 while working as a neurosurgical intensive care unit nurse, Buxhoeveden’s life path changed when she quickly realized she could use her experience as someone living with the disease to have a positive effect on the MS community. She now works as a nurse practitioner and specializes in MS care.
“After diagnosis, I picked up every textbook. I went on a fact-finding mission,” said Buxhoeveden, 31, who still uses a cane on occasional bad days and is working on a doctorate in nursing. “I can help people navigate through that. I know how confusing it is.”
She said that while the goal of treatment remains focused on preventing relapses more than undoing damage, increasing options are becoming available. Half of the 14 therapies now on the market were developed in the last five years, she said.
“This program improves the quality of life by showing people what resources are out there,” said Buxhoeveden, who appears in multiple videos. “People aren’t aware that there are people out there who can help with those things.”
She believes it’s critical that people living with MS be proactive in their care and build a strong support system. “The amount of information is overwhelming, so you need to optimize your healthcare,” she said. “When you’re diagnosed with MS, it’s a lifelong thing. This program empowers you to take ownership and be a participant in your care, to be at your best throughout your journey.”
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.