Full access to healthcare services for chronic arthritis required says sufferer
PHOTO COURTESY ISABELLE DELORMES
Looking forward to a career in animal health care, NDIP resident Isabelle Delormes deals with her own chronic pain on a daily basis.
Living and dealing with the physical pain of a chronic disease is the scenario that Isabelle Delormes faces every day. The Notre-Dame-de-l’Île-Perrot resident was diagnosed at the age of 20 with ankylosing spondylitis, an inflammatory form arthritis that affects the spine and sacroiliac joints.
“At my age, it’s very rare for someone to have this disease,” Delormes told The Journal. “Normally, it’s men over 40 who are diagnosed with it.”
To be able to function in a normal fashion, she needs physiotherapy treatment once a week that costs her $85 per treatment. “The physiotherapy and the medication help a lot,” said the young woman.
Delormes is currently studying animal health sciences in Saint-Hyacinthe, Quebec and holds down two part-time jobs in veterinary clinics to help pay for her physiotherapy treatments.
Paying for treatment
Without insurance and on a small budget, she finds paying for her physiotherapy treatments a challenge.
“The government should provide at least the cost or ideally, free care to people diagnosed with inflammatory arthritis,” she said. “The physiotherapy helps me move without being in great pain,” she said noting that the fatigue caused by the disease is severe and debilitating. As an example, she described how it has taken her much longer than her fellow students to complete her studies.
“I have four courses in one session and my friends have seven. It’s taking me five years to complete a three year course,” she said.
“Sometimes I can drive,” said Delormes. “It depends how much pain is in my neck. Most of the time, my boyfriend gives me a lift.” For Delormes, who recently received her drivers permit, it’s a question of safety. “If I can’t turn my head to see what is coming, I don’t drive.”
Delormes has been in contact with the Arthritis Society and has been receiving information and moral support. According to the Quebec Division Director of Communications, Diane De Bonville, the Society was asking for a clear commitment from Quebec political parties to provide better support for people living with arthritis. In a letter dated August 28, the society pointed out that complementary health services are inaccessible for many people coping with the challenges of living with a chronic disease. The disease not only affects the joints of an individual but also impacts their overall quality of life. The society is advocating for full access to an integrated team of allied healthcare professionals, medication, supplemental treatments, education, the opportunity to develop a social support network and a pilot project of multidisciplinary complementary care teams.
Several days before the election, the Society received a reply from the Coalition Avenir Québec (CAQ), as related by De Bonville.
“A CAQ government will analyze the possibility of deploying a complementary care pilot project in Quebec for the thousands of patients suffering from arthritis. We will seek independent advice on this proposal to measure the benefits to patients, its impact on professionals, the health network, and public finances.”
To date, De Bonville said she hadn’t heard anything from the recently elected CAQ government.
“It’s too early. We have to give them time to get organized,” she said.
Meanwhile, the thousands of people with chronic arthritis, such as Delormes, continue to deal with the realities of their lives.
“Many people don’t understand what it’s like to deal with the pain and fatigue,” she said. “There are days when I’m not able to move.”
Having full access to treatment and services increases her ability to participate with her family, friends, and society, she said.