Last reply 3 weeks ago
Us MSers, parliament and Ocrevus.

Hello friends, what a day Iโ€™ve had. My brother-in-law got me and him an appointment with an MP in Westminster today. It was about the decision by NICE to turn down Ocrevus for PPMS folk, like my sister. It was great to have the chance to talk about MS with someone who knew little about it, about our everyday battles. About the fact that I have an MS nurse but that my sister, in a neighbouring borough, does not. I told him about Ocrevus being the only viable option for PPMS folk, and what a joke it is that NICE says that I am worth the investment (RRMS), but my younger sister with young kids and a life in front of her, is not. Because the cost of Ocrevus outweighs the cost of her longer-term care without it, apparently. I also explained that, quite rightly, not everyone eligible for DMTs chooses to go that route, for good personal reasons. What I am arguing for, is that everyone deserves to have the choice.

Anyway, he was so lovely and receptive. Also, quite shocked. I put the NICE consultation response document in front of him. I also took the liberty of printing a page from Shift, showing the posts on this subject, a balance of pros and cons. He told me he is going to write directly to the Secretary of State, and is making a request for an Adjournment Debate on this subject. He is going to contact the MS Society, some hospitals and other health organisations. All in all, a good days work. And the funniest bit, is that on a desk in Parliament, is a string of posts with you guys on it @rsloan89, @seanachai, @watsoncraig, @lightning87, @stumbler (naturally), @peterfrancis, @pug1, @ londonlad, @highlander, @mermaidia11, @bullman, @robb, @fxmx, @hank, @lynb.

Nice work, team. It may not go anywhere, but at the very least, some people are coming to understand who we are and what we have to deal with everyday x

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watsoncraig
3 weeks ago

Well its one way to get my name in Parliament. Nice one @vixen. Lets wait and see


pug1
3 weeks ago

@vixen Well done you are a star!


stumbler
3 weeks ago

Vixen – noun – a female fox.
INFORMAL
“a spirited or quarrelsome woman.”

I totally agree with that definition. Well done. ๐Ÿ˜‰


lightning87
3 weeks ago

You are amazing Vixen ๐Ÿ˜˜


highlander
3 weeks ago

@vixen so what’s their favourite tipple then?
Like all good machine’s they work best well oiled.
Well done you foxy lady.


seanachai
3 weeks ago

hats of vixen, you have officially earned yourself a wine credit ๐Ÿ™‚


hank
3 weeks ago

great job vixen whatever the outcome we can say we tried !
hank


grandma
3 weeks ago

Well played Vixen, I did the same 20 years ago, bought parliament to a standstill, it gave us the first DMT’s but things are progressing and hmm needs a kick up the backside occasionally to remind them that we’re still here, still fighting. Go for it gitl๐Ÿ‘


vixen
3 weeks ago

Thanks @grandma, afraid I didnโ€™t bring Parliament to a standstill, maybe next time. If nothing else, it was great to meet somebody who knew relatively little about MS and tell our story….


hank
3 weeks ago

hi vixen, i received an email from my M.P. today after emailing him re N.I.C.E and ocrevius he passed it on to matt hancock as minister concerned. The response was that N.I.C.E. havent made a final decsision on ocrevius and P.P.M.S. the intrim answer is no on a cost basis for ongoing care ( I dont see how ongoing care costs are different for R.R.M.S. and P.P.M.S. as we end up in the same place S.P.M.S. . The cost must be the same. But the important thing they said is that their final answer may be affected by our arguments, so the message is we all need to keep pushing and hopefully we will get there in the end !

hank


z900
3 weeks ago

@vixen
Well done.


doubleo7hud
3 weeks ago

@vixen thank phook my names not on that list ๐Ÿ˜‚


doubleo7hud
3 weeks ago

PS did you get them to fix all our PIP results while you were at it I need a bloomin mobility scooter ๐Ÿ˜‚


doubleo7hud
3 weeks ago

PPS well done for given em what for


tonyms47
3 weeks ago

Well done, “Vixen ” you’ve got to fight for everything these days. I applaud you.


vixen
3 weeks ago

@hank, thatโ€™s great news. Since my visit to my sisters MP, he then contacted my MP internally so I think that the collective pressure from different constituencies will hopefully have an impact. And @doubleo7hud, I will make sure the PIP issue is next on my agenda now Iโ€™m getting a feel for this business. And make sure you behave, or your name will deffo go on the naughty list with all that bad language ๐Ÿ™‚


hank
3 weeks ago

hi vixen , sorry but will have to let you carry on this fight for a while as i am out of the country from tommorrow for nearly a month as i go to U.S. tommorow but will be watching from afar. If i get time will report on my progress .

yours hank

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