TORONTO - An expert panel will advise the Ontario government on how doctors can provide followup care for people with multiple sclerosis who undergo so-called liberation therapy in another country.

The unproven treatment to unblock blood vessels is based on a theory that narrowed and twisted neck veins may be behind MS, which was long thought to be an auto-immune disease.

With the federal government holding off approval, some Canadian MS patients are seeking the treatment at high-priced overseas clinics, and the result is not always positive.

Some have complications when they return and often don't have proper medical records detailing the procedures they underwent, said Health Minister Deb Matthews.

"We've heard anecdotally that patients are coming back and they don't even really know what procedure they've had done, so it's very hard for the doctors here to provide the best care," said Matthews.

"Sometimes they don't even tell their doctor treating them here that they've had the procedure done, and we know that doctors do need a little bit of guidance on how best to care for people on their return."

The Ontario expert group will develop best practice guidelines for treating the MS patients who've had the experimental procedure (known as Chronic Cerebro-Spinal Venous Insufficiency or CCSVI), and will provide information to patients as well as doctors.

"What should patients know before they go in terms of what information they should bring back for the best continual care," asked Matthews.

"How can we better support those patients who have made this difficult and expensive choice to go elsewhere for this care?"

The New Democrats said the province had to act after many doctors in Ontario refused to treat patients who returned to Canada after getting the liberation therapy overseas.

"I hear from lots of my constituents who have gone ... some of them need post-operative care like any other surgery because they ran into problems," said NDP health critic France Gelinas.

"Now you have physicians in Ontario turning them away, refusing to give them care, saying 'I didn't do the surgery, therefore I'm not doing the post-op care.' The ministry had no choice but to act."

The Ontario government really has no idea how many MS patients have sought the liberation therapy overseas, admitted Matthews, but it wants to make sure they get proper care when they return.

"We want doctors here to know how to treat patients who are returning having had the procedure done," she said.

The expert panel isn't scheduled to report back until October, the month of the next Ontario election, but Matthews said she hoped it would be done sooner than that.

"The faster they can be the happier (I'll be),"she said.

"I want them to take the time to get it right, but obviously the sooner we can get it done the better."

The New Democrats said the government's move to set up the expert advisory panel should be better for patients and doctors.

"The situation was not fair for physicians, who basically are stuck providing post-operative care on a surgery we don't offer, and it was not fair to clients either, some of whom will run into complications and need post-operative care," said Gelinas.

Ontario also supports the call by the MS Society of Canada for a national multiple sclerosis registry for patients, but has no plans to start experimental trials with liberation therapy, said Matthews.

"There is increased awareness of CCSVI for MS but, at this time, the procedure is experimental, and its efficacy must be proven before it becomes an insured service," she said.

"That's why Ontario is not advocating for CCSVI."

http://www.globallethbridge.com/Ontario+looks+after+care+patients+liberation+therapy+abroad/4367627/story.html