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The Multiple Sclerosis Quality of Life Project: Improving Access to Services in California

by Mary N. Wessling, PhD

Published 6/22/2009; © 2009 Mary Wessling

The Multiple Sclerosis Quality of Life Project was born of frustration.

In 2000, it was the combined frustration of two health professionals, Dr. Lotte Marcus, a clinical psychologist, and Dr. Gerard Lehrer, a neurologist, and the frustrations of their patients and clients with MS, that provided the momentum. What evolved over the past 9 years is a vital organization that, rather than providing medical services, instead facilitates access to them for those with MS.

MSQLP serves three counties in California: Monterey, San Benito, and Santa Cruz. The population is spread out; much of the area is rural, mountainous, and semi-rural, with about 750 persons with MS distributed over 5000 square miles. There is no specialized clinic for MS treatment, such as is found in areas with a large, concentrated population.

In 2002, we conducted a needs assessment to determine the most critical needs of our MS population. We found that the greatest difficulty was accessing already existing social and health services.

The needs assessment revealed that more than half of those with MS, and nearly two thirds of those who were wheelchair or bed-bound, were single, divorced or widowed. Forty percent lived alone or in skilled nursing facilities and lacked advocates and help in safeguarding and enhancing their well-being.

The most disabling MS symptoms were fatigue, vision deficits, and weakness. More than half were not prescribed disease-modifying therapy, and many were taking their medications irregularly or not at all. Almost half had no backup plan for negative change in their finances; many felt the need for help in maximizing their existing resources. Most of the respondents received assistance from Medicare or MediCal, but these systems are designed primarily for acute care, not for the costs of prescriptions and the living expenses that chronic illness impose.

To fill those needs, we established our HouseCalls case management program. We work one-on-one with our clients: first in their homes, conducting a detailed assessment, and then establishing a treatment plan specifically for the client, with the goal of improving quality of life. We don’t just make appointments for them, we take them to their appointments.

Because many of our clients have cognitive problems, filling out the inevitable paperwork is a huge hurdle. We have support groups, social events, fundraising events—our annual Walk-n-Roll is, in many ways, a combination of all three. To counteract any tendency toward inactivity, we urge our clients to come to our weekly water aerobics class. We have a support group for the caregivers as well.

From the beginning of the HouseCalls program in 2004 until April 2007, we have assisted 196 clients: 144 persons with MS and 52 caregivers. At that time, we had a case manager trained in social work, assisted by three outreach assistants. With the backing of pharmaceutical companies and grants from the State of California, the National MS organization, the local community hospital, foundations, and personal donations, our annual budget in 2007 had reached more than $157,000, or $68 per client per month.

Today, the economic story is quite different. As with other non-profits, our financial support has diminished substantially, and we’ve made significant changes to continue to serve our clients. First, we moved into a smaller office with lower rent. Sadly, we could no longer pay a full-time social worker. However, the HouseCalls program is now run by a committee of volunteers, many of whom have professional health care and social work credentials. We’ve cut back, but not cut out.

We remain facilitators. A recent example: a client with a job that requires a daily commute could no longer coordinate his hands and feet well enough to continue driving. He faced losing his job; he'd had two accidents. We helped him get hand controls for his car through National MS assistance by filling out the financial and insurance forms for him. And, most importantly, we made sure that he considered his worst MS days when filling out the forms: if it’s a good MS day, many persons with MS tend to underestimate their actual needs.

Like the angels in their spiritual and biblical role, we bring a message. Our message to persons with MS and their caregivers is that we will continue to facilitate a better quality of life for you.

Multiple Sclerosis Quality of Life Project

National MS Society

MS Foundation

MS Association of America

Mary N. Wessling, PhD is a medical and technical writer and editor based in Aptos, CA. You can reach her through her website, Language Matters Santa Cruz or by email at mnwess@earthlink.net.

About Angels in Medicine

Angels in Medicine is a volunteer site dedicated to the humanitarians, heroes, angels, and bodhisattvas of medicine. The site features physicians, nurses, physician assistants and other healthcare workers and volunteers who reach people without the resources or opportunities for quality care, such as teens, the poor, the incarcerated, the elderly, or those living in poor or war-torn regions. Read their stories at www.medangel.org.

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