MS Society sells facility to stress research; void leaves some bitter
Recreation programs offered by the Multiple Sclerosis Society through new community partnerships have done little to fill the void left by the abrupt closing of its local facility in December, some clients say.
But the MS Society is standing by the closing, saying it will allow it to serve more people across the Island, calling the new programs a success.
Since January, the society has hosted programs such as art and qi gong at partner organizations, including the Oak Bay Recreation Centre, Silver Threads Victoria, the Cook Street Village Activity Centre and private fitness facilities.
Those programs were previously hosted at the MS Society’s facility in North Park, which the society’s national board decided to sell in favour of funding research — a move that came as a shock to many and has left some bad blood between the society and some of its clients.
While the North Park facility was hailed as a community gem by those who used it, it was unique to Victoria. Many have argued the MS Society, a charity, shouldn’t be subsidizing health services that should be provided by the province.
River Grace, who moved across the street from the North Park facility 10 years ago for daily access, said her health declined when it closed.
“I was just lost, devastated. I felt like I had no worth at all, like I was useless,” said Grace, who has lived with multiple sclerosis for 40 years.
“I could barely walk after that. I just kind of broke down. I was sicker than I had been in quite a long time from the stress and trying to cope with being abandoned … I couldn’t sleep or eat well. And I don’t think I was alone.”
The facility not only provided her with subsidized physical activity, but also with social contact and a sense of community — which is vital with such an isolating condition, she said.
Since it closed, she can no longer afford physiotherapy and has had difficulty accessing the programs because they are scattered across the city. She said the facilities aren’t always appropriate — an art class was held in a gymnasium and a qi gong class had space for just two power chairs.
“They’re in rooms no one else wants and we got shoved into them. They’re not suitable, especially for our power chairs,” she said.
Some members of the MS community have formed an alternative organization. The Victoria MS Wellness Centre has begun hosting seminars and community gatherings. It ultimately hopes to create a space similar to the facility that closed, she said.
“Even though [the MS Society is] providing some very low-cost services like the art program, the most important services — the community, the physio and fitness — are gone,” said organizer Susan Simmons, a marathon swimmer.
She said the $50-a-month gym membership and $125-an-hour physio sessions offered by a fitness facility through the society are too expensive.
“For someone bringing in $1,000 or $1,500 per month on disability, that’s unaffordable. The people who need the service the most are also living in poverty.”
MS Society division president Tania Vrionis said any extra support for people in need is good. “We applaud any organization that wants to fill a gap, especially one we’re not able to fill,” she said.
“If there’s an opportunity to partner, we’d be willing to explore all kinds of things. Duplication of services may not be the best solution, so we want to make sure we complement each other.”
But she said relocating the programs to partner locations has been a success.
“I know it’s very early stages, but we are seeing exactly what we hoped to see with this. We’re serving many people, some of the programs are even better attended than they were at North Park and we’re seeing new people, so that’s what we’d hoped for.”
When the society sells the North Park building, she said a fund will be set up to provide $80,000 each year for 10 years to support programs and services on Vancouver Island. Ultimately, the society would like to offer more services to people outside of Victoria.
The society is offering help to connect clients with financial assistance, to help with the new costs of physiotherapy and other barriers they might face.
“We recognize it won’t be the same, but I do feel we’ve come up with some great solutions,” Vrionis said.
Chris Mann, diagnosed with multiple sclerosis four years ago, said he had mixed feelings about closing the facility.
While he had sympathy for those who have depended on it, he said he also believes in research — which is where the national office said most of the savings would go.
Mann was the first on Vancouver Island to benefit from a new treatment called monoclonal antibody therapy, which he said has drastically improved his condition.
“If it weren’t for research, I’d probably be in a wheelchair today,” said Mann, 37.
“I certainly don’t want my kid or her kids to go through this, you have to look at the bigger picture.”
A more important fight, he said, is lobbying the province to provide some of the health services that the MS Society has stepped in for, as well as drugs for his therapy, which are not covered by the province.