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PostPosted: Sun Oct 21, 2012 4:28 am 
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This is question not a statement.

It's been suggested to me the the Edinburgh Health Clinic has not renewed it's insurance to offer CCSVI procedures. The suggestion is it's either not being offered or is prohibitively expensive and the Dr Dake issue has compounded this?

Anyone know if this has any substance?

Are the EHC still taking bookings for treatment?

EDIT:- It seems this is largely as a result of the unfortunate BBC Documentary:-

http://www.youtube.com/watch?v=QMYu_-ejOvE&feature=plcp

Anyone know any more info?


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PostPosted: Sun Oct 21, 2012 10:14 am 
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As of Aug 31, MarkW had it from Dr. Reid himself that EHC was continuing to offer CCSVI treatment.
MarkW wrote:
Cece wrote:
I had thought of this thread when I posted Dr. Neville's IVUS research. Thanks for bringing it over. And Dr. Neville's conclusion was the usual conclusion we hear from IRs using IVUS, that it played a critical role and may be essential.
We heard from a TiMS poster that EHC has stopped performing CCSVI procedures for the time being. I have not verified this but if true, we are down from seven to six again.

I spoke to Donald Reid after the NICE guidance and he said that EHC are continuing to offer therapy. The post was incorrect.
MarkW

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic18063-90.html#p197472

I don't know anything more than that, though, and am concerned about the rumors.


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PostPosted: Sun Oct 21, 2012 1:54 pm 
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Hmmm, I've had two people independently tell me they are no longer offering treatment plus they don't seem to be offering any new appointments on the website.

I'll see if I can get hold of them and see what the situation is.


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PostPosted: Tue Oct 23, 2012 11:05 am 
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Well I just can't get a straight answer to this.

What is clear is no new appointments are currently being offered.

Anyone with an existing appointment on the board that can enlighten us?


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PostPosted: Thu Oct 25, 2012 12:39 pm 
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I spoke to the Glasgow Clinic (not Tom G or Donald R). They are at the end of the current trial (remember all CCSVI in UK are trials even if the patient pays). I am in the midst of a home move so will not get full info for a week or so).
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html


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PostPosted: Tue Dec 18, 2012 2:52 am 
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I got an update on the EHC from a fellow patient. I'll quote here here:-

"EHC have stopped CCSVI treatment because their insurers hiked up the cost so much that it became impossible to offer treatment at a price people could afford."

I asked her if this was firm or speculative and she replied:-

"I got this information first hand from Tom Gilhooly, Donal Reid, (the surgeon) and the Edinburgh Clinic when I visited them when they were winding up the procedure. I have had a close relationship (helpful but not financial I hasten to say) with EHC as they funded and arranged the only CCSVI conference in Glasgow in 2010, I could not fund such a venture myself and got in touch with them after the example of the LDN-now group. Tom Gilhooly has organised two LDN conferences."

So sadly it looks like the EHC are no longer on the CCSVI list.


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PostPosted: Tue Dec 18, 2012 11:08 am 
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That's shocking.
If it's not one roadblock, it's another roadblock. Insurer hikes.
Dr. Gilhooly and Dr. Reid have my respect and I hope they will return to CCSVI in the future when possible.


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PostPosted: Tue Dec 18, 2012 11:21 am 
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Donald Reid performed Emma's CCSVI treatment and he was first class. I figure being patient number 39 at the time wasn't a huge help and things have come a long way in the two years since. But I couldn't fault the treatment or the facilities.


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