Take on the NHS...

[snowbound]

how do we get details of CCSVI DUPLEX, vascular surgery etc in the first place to take to our GP as the MS society have washed their hands of CCSVI here in the UK and most GPs do not help without Neurologists agreement which is also unlikely because of the MS roadblock?

[acol]

Hi Snowbound

I think that you will be unlikely to get treatment on the NHS if you go down the exclusive MS route ie) you say to your Dr that you have MS and want to get your CCSVI treated by a vascular surgeon. Your Dr will do no more than refer you to your neuro - end of road!

However, you have a better chance if you were able to report any symptoms of a vascular disorder. Clearly it would be helpful for you if your medical history supported your claim. In my case I have suffered from unusually long headaches - lasting 2 or 3 days in some cases. These headaches started around the time of my MS. This coupled with the preliminary research of CCSVI caused me to believe that the likely blockages of the veins were the cause of these headaches. My Dr immediately suggested referring me to my neurologists. I rebutted this suggestion by saying (quite truthfully) that I had already discussed this with my neurologist and she didn't want to know because it was a vascular problem. In every respect I was being completely truthful however I saw no need to volunteer the information that my neurologist also thought that CCSVI (in respect to my MS) was irrelevant.

Where has all this got me? Not very far I am afraid. I've had the dopppler and I am seeing the vascular surgeon this afternoon. He may refer me for an MRV or not. However, an MRV in the hands of someone unfamiliar with CCSVI may still prove negative.

In other words, currently you will have to climb a mountain if you want to get anywhere with CCSVI at this present point of time. If I were not booked to go to Poland next month then I would be trying all my persuasive powers this afternoon. As it happens I have to fight the temptation to cave in for an easier life.

Good luck with whatever you decide to do.

[acol]

I should have added the fact that the extremely anti-attitude of the UK MS Society will have added greatly to your difficulty of being treated for CCSVI. Even if you found a sympathetic neurologist or vascular sugeon, they will almost certainly say words to the effect 'Well, even your own charity, The MS Society, views this procedure as 'unsafe and untested and that dilating the veins is unlikely to benefit anyone with MS'

Aren't we all lucky having such a wonderful, caring, supportive MS Society? With friends like this you don't need to bother finding enemies. 'Oh, what was that Sir - do you want an armful of toxic prescription drugs? No problem Sir. They may offer you a very marginal benefit and just ignore all those nasty side-effects mentioned in the leaflet inside the box. And just remember that you will need to take these pills for LIFE - which means that the pharma Company can give nice fat bonuses to all their directors and shareholders.'

[MSUK]

There is one of the three UK MS charities who you can gladly quote on CCSVI to your Neurologists...

The MSRC have said..

MSRC Statement on CCSVI and Dr Paolo Zamboni’s work.

"MSRC is very encouraged by the early results of Dr Paolo Zamboni’s work. There is no doubt that this area warrants a great deal more study. This could represent a completely novel approach to MS research which, if proven to be relevant, could be a “sea change” in the understanding of the mechanisms involved in the condition. There has already been a huge amount of interest about this study and MSRC will continue to report on any and all developments in this very important area. MSRC looks forward to the results of the further trials that are taking place and hopes that these studies are able to reproduce the findings of Dr Zamboni.” - Helen Yates MSRC Chief Executive.

And on the newly announced Essential Health Clinic's CCSVI Scanning Service

MSRC STATEMENT."MSRC is fully supportive of Essential Halth Clinic's efforts to enable scanning for CCSVI in MS patients in the UK. Currently anyone who believes that they have this problem has to go to Europe even just to get scanned, never mind treated. Enabling the scanning to take place here in the UK will represent a big step forward for people affected by Multiple Sclerosis who believe this venous insufficiency problem lies at the root of their MS"
Helen Yates
Chief Executive

[Dovechick]

I entirely agree with Squiffy, MSRC is always aware of what is going on and tries to take a dispassionated look at new developments whilst as the same time supporting people with MS. In the interest of all its members it tries not to take sides so as not to appear prejudiced against certain sections of its comunity. Most pwMS in the UK will turn to MSRC at some time or other.

However since we are selling ourselves here today, there is a newly formed group, which actually started here that is unashamedly partisan to CCSVI and the Liberation procedure, and since this is our remit we do everything we can to promote it. www.ms-ccsvi-uk.org was set up to bring CCSVI to the attention of the authorities, the MS community, the medical profession, the political arena and the media.

So if you want things to happen faster in the UK, come and visit us and lend us your voice for a few weeks and see what we can achieve together. Already our MPs have been informed and some of them are bringing this to the attention of All Party Parliamentary Groups for Healthcare. We have managed to put the message across on the radio, on Sky TV, in Newspapers both local and national, as well as sending information to neurologists, ms nurses, ms therapy centres and groups, interventional radiologists, vascular surgeons. Our petition to the Prime Minister has accumulated 3000 signatures in 6 weeks, we could do with more, so if you are a UK citiizen at home or abroad go to the site and vote. http://petitions.number10.gov.uk/CCSVINOW/

[MSUK]

Hi Dovechick, thank you very much for your kind words with regards MSRC, they are very appreciated.

www.ms-ccsvi-uk.org has done wonders in a very short time to raise awareness of CCSVI in the UK, keep up the very good work.

[Dovechick]

Thanks Squiff, we are kind of amazed ourselves. It is all down to the team.. All those skills coming together make for a formidable task force.

[acol]

Just a quick update. I saw my vascular surgeon yesterday and he confirmed that the doppler test was negative - as suspected. I think that he was about to suggest that we had come to the end of the road as to what could be done when I reminded him of the view of the radiologist. She stated unequivocally that the doppler test would not necessarily be able to determine certain blockages and that an MRV would be required. The consultant accepted that pov and he is going to refer me for such a test - he said that he knew someone who might be able to do this for me.

And so the road show continues. It remains to be seen if I get this test. Likelihood is that I will have returned from Poland before I even get a date. Even if I manage to get an MRV done then there is still no guarantee that the operator will be able to find a blockage - assuming that one is present.

[xia]

Hi,
I havent updated my progress in while...
I hope you have had some luck, my appoint with the vascular surgeon went well! Despite the fact that he had negative feedback from the neuro he referred me to!!
He had read all the papers I sent him and he said (I quote) 'I think there is something in this'!! Brilliant i thought and I explained that I was on a waiting list for poland, he said he would try and sort out the scan b4 then. Sadly that didnt happen and I had to confirm poland. Typical NHS waiting lists!!
I have a scan appoint for when I get back and hopefully the surgeon will review me periodically when I present him with the proof.
I guess its a good out come, lets hope things move forward here in the UK!
Take care
xia

[acol]

I also posted an update on anther thread. Basically, my situation is as follows:

2 days ago I had the CT scan and the test also included a dye being injected into my veins to try to detect a blockage. This test was done under the NHS. A previous doppler test had proved negative. Unfortunately, I will not get the result of this scan until after I've returned from Poland. It may be ancient history by then - oh the wonders and speed of the NHS!

If I was a betting man I would bet that the scan will prove negative. AFAIAA the scan only included the juggulars and not the Asygous vein. Does anyone know where the CT Angiogram Intercranial fits in with the MRV scan? In other words is it less good or on a par with the MRV? It was the latter test that was requested by both me and the radiologist who carried out the doppler test.

[Dovechick]

Hi Nigel,
I don't know much about CT scans, but what I do know is that it produces a static image made up of many slices of your body or part of your body, this image can be maniputated to show a 3D effect of organs and structures. However what it does not do is produce a continuous image in time of these structures, so that what you get is a snapshot of a point at a particular moment. The advantage of a venogram over a CT scan (both use xray) is that the venogram uses a continuous image over time. So blood FLOW can be monitored. Veins are changing profile all the time depending on the pulse of blood driven by the heart, so that at one moment they may be flattened and at another filled with blood. Not very helpful when trying to detect a stenosis.
From what I understand venography is the gold standard for detecting stenoses. Dopplers are a good non invasive indicator of problem, but may not be accurate enough to pinpoint the exact location of a stenosis... A venogram will show exactly where it exists if it exists.
Remeber Nigel that I am not a medical person, just an assiduous investigator. I do not understand the finer details that may apply here so take what I say with a pinch of salt and check it out yourself.

[acol]

Hi Michele

What you say makes a lot of sense and thank you for posting in your roving mode - very considerate. From what I've read on other threads, Ella has had a stent inserted and appears to be doing well. I'm so pleased. I look forward to hearing more news in due course. We will be exchanging places next week.

Returning back to the subject in hand, if the CT Scan is as you say then it is just as well that I backed my horses both way. The MRV was obviously in the too difficult box to arrange.

[Dovechick]

Both Venography and MRV would be much more expensive than Doppler and CAT (CT) scan.

[L]

I'm going to meet an NHS UCL interventional radiologist in a few weeks with a doctor friend of mine to see if I can interest them at UCL. Hopefully Buffallo will have reported by then. If I have a positive meeting with the Buffallo data, (pray god, its good!) perhaps I should put her in touch with your "team"?!!

I'll be interested to hear what the reaction is. Good luck!

[MarkW]

The English system is that NICE (National Institute for Clinical Excellence) needs to approve a new drug, therapy or procedure before your PCT (Primary Care Trust) should provide it. This is how NHS rationing works in England and Wales (different body in Scotland).
If a Radiologist or Vascular Surgeon wants to do a few cases that would not raise many issues in terms of budgets. However if the Neurologists opposed this (in that hospital) it would be killed on budget grounds as a 'non NICE approved procedure'.
My view is that pwMS in the UK will not get NHS treatment anytime soon, unless they know someone who will go on a limb for them. I hope that private testing and treatment will be available later in 2010 in the UK. Until them our only real option is to self fund treatment outside the UK.

Sorry its not good news but it is how I see the reality of the NHS.

Kind regards,
MarkW