Helping Patients, Caregivers, and Survivors Navigate Cancer Support Resources: The Art of Connecting People

TON - November 2018, Vol 11, No 5 - Survivorship
Meg Barbor, MPH

Cancer survivors are in it for the long haul, sometimes decades, and their needs change over time, according to Carolyn Messner, DSW, MSW, OSW-C, FAPOS, LCSW-R, Director of Education and Training at CancerCare. Therefore, members of the multidisciplinary care team should work collaboratively to continuously fine-tune the resources available to survivors to provide high-quality, innovative care, “and to get people what they actually need over that long haul,” she said at the 2018 Cancer Survivorship Symposium.

“Survivors of different ages, different lifestyles, and different cultures need different types of resources, and the number of resources that are needed is huge,” Dr Messner added.

The financial cost of care is not limited to medical costs and includes necessities such as transportation, housing, legal assistance, food, and workplace accommodations to ensure a survivor can maintain employment during and after treatment.

“A transportation grant, for some people, means that they can get to their treatment,” Dr Messner said. “You can’t always solve the entire problem, but sometimes a small resource can allow someone to keep up the momentum in their life, their quality of life, and the things that mean a great deal to them.”

Many organizations are available to help cancer survivors, but to get started, Dr Messner recommends providing survivors with the names of just a few organizations that can assist them.

“These organizations will refer people to others, if necessary, and you don’t ever want to give someone a list of a thousand names. They wouldn’t know where to begin,” she said.

Where to Start?

Dr Messner provided a list of key organizations that may be a good place to start when providing patients suggestions for specific resources. The list below is a sample of key support services specific to patients with cancer.   

 

General Survivorship Support

The American Cancer Society has a call center (800-227-2345) open 24 hours daily, 365 days a year, which can be especially valuable to a patient with a troubling question or concern in the middle of the night.

CancerCare’s Hopeline (800-813-4673) is staffed by trained oncology social workers and is open Monday – Thursday: 10 a.m. – 6 p.m. EST and Friday: 10 a.m. – 5 p.m. EST.

The Cancer Support Community (www.cancersupportcommunity.org) is a national and international organization that can be particularly useful to survivors not residing in the United States.

“The National Cancer Institute is unique in the sense that sometimes survivors just want to get information that they feel is credible, and they don’t quite know where to go. They might have a question they would like to ask their oncologist, but they don’t quite know what their question would be,” Dr Messner said.

The National Cancer Institute offers a live chat feature (https://livehelp.cancer.gov) through which survivors can chat with information specialists and receive information to take back to their treatment team. This feature is also useful for international patients who prefer to avoid a potentially expensive phone call.

The National Coalition for Cancer Survivorship (www.canceradvocacy.org) is another go-to resource with a strong focus on survivorship as a crucial issue.

The searchable A Helping Hand database (www.cancercare.org/helping
hand
) allows individuals to find fitting resources by simply entering their ZIP Code and describing their need.

 

Financial Support

NeedyMeds (www.needymeds.org) offers support to patients struggling to pay for their medications, in addition to many individual groups and foundations.

 

Legal and Work-Related Support

Cancer and Careers (www.cancerandcareers.org) offers various programs and webinars focusing on workplace issues.

The New York Legal Assistance Group (www.nylag.org) and Triage Cancer(http://triagecancer.org) can assist with any type of legal issues that cancer survivors may be confronted with (eg, immigration, workplace matters).

The US Department of Labor (www.dol.gov) offers assistance to survivors facing obstacles in the workplace.

Tell Your Patients

“None of us can do this work alone, and we do need the whole multidisciplinary team,” Dr Messner said.

“But the most important thing is that there are resources out there, and it’s the art of connecting people with those resources that’s so impor­tant,” Dr Messner emphasized.

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Last modified: December 14, 2018