Women with disabilities receive primary care
This idea may seem so basic that a rehab director may wonder why it hasn’t been implemented by dozens of larger rehab facilities across the country: Offer rehab patients a disability-friendly place to receive primary care and health screenings.
SSM Rehab of St. Louis came up with the idea after surveying 1,100 women in August 2000 who were former rehab patients. The survey unleashed a flood of support for the birth of a clinic that would be specialized to meet the needs of women in wheelchairs.
The women were asked how regularly they have Pap smears and mammogram health screenings.
"Most had had one, but what we saw on most of the surveys were comments of, I had one before, but haven’t had one since my injury,’" says Angela Allen, PT, manager of women’s services.
"Most said they couldn’t get in to be seen by their doctors, and OB/ GYNs didn’t know how to handle them," recalls Melinda Clark, president of SSM Rehab.
Survey responders also added comments, writing brief accounts of some of their own stories about discouraging attempts to seek health care from providers who were not prepared to handle disabled patients.
"The story that upset me the most when I heard it was about a woman who had some sort of lump in her breast," Allen recalls. "She scheduled a mammogram and was unable to stand for the mammogram machine, and it didn’t lower enough, so the hospital brought in two male security guards to lift and hold her in a standing position for her mammogram."
The poor woman was nude from the waist up, and the experience was so humiliating and degrading that she never went back, although the mammogram revealed a lump that could have been cancerous, Allen says. "We hope to get her in our clinic."
In other stories, women told about how their gynecologists were unwilling to do cervical exams because it would be too difficult to transfer the wheelchair-bound women to the high examination table.
Disabled women need preventive medicine that too often is unavailable to them because of access problems, says Thy Huskey, MD, a physiatrist and medical director of general rehabilitation for SSM Rehab. Huskey is the director of the new women’s clinic.
The chief priority in the clinic’s first year is to make mammograms and Pap smears available to disabled women so they may have the life-saving benefits of early detection, Huskey says.
"I think women with disabilities just want to find a place where they can come and find health care services without seeing the shocked look on people’s faces of Oh, you’re in a wheelchair,’" Huskey says. "And that’s what we’re hoping to create in this environment."
Huskey adds that she has a special interest in a rehab facility providing this type of service because she experiences life from the perspective of a wheelchair. "I know the feeling of going in for a Pap smear and informing the clinic ahead of time that you’re in a wheelchair," Huskey says.
While some training hospitals and rehab facilities may provide some of these services for disabled women, the program created at SSM Rehab is probably one of the first to be designed solely for the purpose of providing women’s preventive health care to disabled patients, Huskey adds.
The patients, who include women with spinal cord injuries (SCIs), multiple sclerosis, and other disabilities, have access to examination rooms and radiography equipment that are specially designed to accommodate women in wheelchairs. They also have access to a whole network of rehab and other health services provided at the same location, says Allen.
So an SCI patient can visit the new women’s clinic for her Pap smear and mammogram, and then if she is discovered to have breast cancer, she can receive surgery and radiation through the health care system, Allen explains.
"If she has lymphedema, we can send her to a lymphedema specialist to treat her," Allen adds. "We have a web around patients to give them support."
Just the beginning
Along with a nurse practitioner and obstetrician/gynecologist, Huskey will round out the basic medical team.
Huskey’s role will be to provide a rehab perspective on women’s health issues, such as helping patients deal with pelvic pain associated with bladder hygiene and helping patients avoid and treat yeast infections, which are common among women confined to a wheelchair.
"The rehab role is to address what kinds of things can go wrong that other women don’t have to worry about," Huskey says.
Also, Huskey expects that she will be able to answer questions for patients about sexual pain and other sexual issues that they may be too uncomfortable to ask their OB/GYN.
"We need to address that, because the spinal cord injury didn’t affect the patient’s mind; the patient may still want to one day have a family and be a part of a meaningful relationship," Huskey says. "As word of this clinic gets out, we hope people realize that we’re not doing things superficially here."
Although the clinic still is in its infancy, Huskey already can envision future expansions that could include offering obstetrics services.
"I’d like to do a couple of little items first and do those really well before we get ahead of ourselves and do it very poorly," Huskey says. "But we are anxious to expand to obstetrics."
Also, the clinic could be a focal point for women in wheelchairs to receive much-needed support and information about adjusting to daily living challenges, she notes.
"I hope women coming to the clinic can form support groups for things like mothering and how to do chores in a wheelchair or walker," Huskey says. "I hope they will get together and share these things, and in the long run we can form a network of women in wheelchairs."