@Hannah015

Last reply

Hannah015

Petition is up for Lemtrada

Hey all My petition to get Lemtrada available to all in uk has been approved. Please please please can you sign it. I need 100,000 signatures to get this talked about in parliament. If you go on number 10 petitions website, search Lemtrada then sign it, they will send an email, you just click on it and it's signed. Your help will be massively appreciated. Thank you so much

Stumbler

@Stumbler

And, here's a link to go straight to this petition :- http://epetitions.direct.gov.uk/petitions/74987 :wink:

TracyD

@TracyD

Signed, reposted on Facebook and about to start a bit of a social media campaign on the subject :-) xx

Hannah015

@Hannah015

That's fab @stumbler thank you

Hannah015

@Hannah015

@tracyd that's amazing thank you. I have contacted a few people, shared it on Facebook and tweeted it too, thank you

Stumbler

@Stumbler

@Hannah015 , that's the least I can do. Apart from put it on my Facebook and share it with my local MS Treatment Centre. Oh, and post it on another UK MS support forum. :wink:

Hannah015

@Hannah015

@stumbler that's awesome thank you so much, your fab

Stumbler

@Stumbler

@Hannah015 I'm just a bit concerned that the charities, that support us (allegedly), e.g. MS Society, Ms Trust, MS-UK, eyc., haven't kicked up a stink about this!

Hannah015

@Hannah015

About my petition or the treatment? @stumbler x

Stumbler

@Stumbler

About the delays in treatment, @Hannah015 . :wink:

Hannah015

@Hannah015

Oh yeah I know @stumbler, it's quite worrying. The amount of money the nhs can save in long run alone with this treatment and then the benefits it seems to have on peoples lives, it does seem odd that nothing is being done. So many people aren't even being offered it or are waiting like me. It's shocking, I won't stop till I get answers lol

Stumbler

@Stumbler

Totally agree with your arguments, @Hannah015 . Another "SNAFU" by our over-stretched NHS! lol :lol:

Hannah015

@Hannah015

Thanks @stummbler

Hannah015

@Hannah015

Not sure how my message changed there lol @stumbler What's SNAFU mean lol

Stumbler

@Stumbler

@Hannah015 , snafu snaˈfuː,ˈsnafuː NORTH AMERICANinformal noun 1. a confused or chaotic state; a mess. "an enormous amount of my time was devoted to untangling snafus" adjective: 1. in utter confusion or chaos. "our refrigeration plant is snafu" verb 3rd person present: snafus; past tense: snafued; past participle: snafued; gerund or present participle: snafuing 1. throw (a situation) into chaos. "you ignored his orders and snafued everything" or, I prefer this definition :- http://www.urbandictionary.com/define.php?term=SNAFU :wink:

Hannah015

@Hannah015

Lol @stumbler that's my new thing now

Hannah015

@Hannah015

Thank you @sandwich

TracyD

@TracyD

I have posted a public announcement on the forum I own with my my husband and a couple of business partners footballforums.net asking our membership to help by signing the petition and sharing the message across the Internet and social media, we have number of members who are professional sportsmen, journalists and social media experts It's the largest football forum in the UK and one of the largest in the world .... Should be good for some signatures and message sharing :-)

Hannah015

@Hannah015

@tracyd that's amazing thank you soooo much that's fabulous

Stumbler

@Stumbler

@hannah015 , @tracyd has prompted me to post this petition on the Maggotdrowners forum. It's one of the largest UK fishing forums. :wink:

Hannah015

@Hannah015

@stumbler and @tracyd you are both amazing thank you for your help

Hannah015

@Hannah015

@sandwich I don't think it has yet but if you could that would be fab thank you so much. Getting a lot of interest on Facebook, been shared by loads of people :) I have emailed my local mp to help and posted to jack Osborne lol

TracyD

@TracyD

I've also tweeted all of the celebrities who are declared on the MS society website as publicly involved in fund raising for MS asking them to retweet along with Reginald D hunter who's just a lovely guy :1)

Hannah015

@Hannah015

Lol me too, well a few anyway, omg that's brilliant thank you @tracyd, you have been fab

TracyD

@TracyD

Tweeting every celebrity I can think of including the local radio station DJ's who like a good morning spleen venting for a good cause :-) Also the petition is now linked on the Wolverhampton wanderers forum and the West Bromwich Albiom forum as well I like a good crusade me :-)

TracyD

@TracyD

OMFG it's been retweeted by celebrity chef Nathan Outlaw !!!!! :-) :-) :-) xx

Hannah015

@Hannah015

@tracyd your an absolute star, thank you so so much, lol can't believe it's been retweeted that's brill

TracyD

@TracyD

Hahaha my obsession with food porn is clearly paying off, it's been tweeted by Tom Kerridge the owner of the two michellin star hand and flowers in marlow and My phones going bonkers with the retweets :-) xxx

Hannah015

@Hannah015

Omg no way that's brilliant, you are fabulous, I just tweeted some more celebs too that work in radio in hope they can help :) thank you so much @tracyd xxxx

TracyD

@TracyD

And now Daniel Clifford ..... If James Martin wants me on Saturday Kitchen I am so going :-)

Hannah015

@Hannah015

Lol @tracyd can you sneak me some food if you do

GlassHalfFull

@GlassHalfFull

Just signed up. Good luck with it.

Hannah015

@Hannah015

Thank you so much @Glass1/2full

Graham100

@Graham100

I will go and sign now. As when I asked my MSnurse about it last week, her answer was you've got no chance. There are 2 other things before we get lemtrada?? I will share with my 700+ Twitter followers too.

Hannah015

@Hannah015

Hey @graham100 Thank you that's great

Hannah015

@Hannah015

Not sure what happened to my message it was really long :( Basically NICE who approved Lemtrada state that the hospitals have a legal obligation to provide this drug to anyone suffering with RRMS who have suffered two or more relapses and gave active ms within 3 months of approval which was May 2014, it's shocking it's not been offered to everyone seeing as the results appear to be amazing and it will save the nhs millions in the long run. I really hope my petition can help

Hannah015

@Hannah015

@Graham100 Not sure what happened to my message it was really long :( Basically NICE who approved Lemtrada state that the hospitals have a legal obligation to provide this drug to anyone suffering with RRMS who have suffered two or more relapses and gave active ms within 3 months of approval which was May 2014, it's shocking it's not been offered to everyone seeing as the results appear to be amazing and it will save the nhs millions in the long run. I really hope my petition can help

StallionicChampionic

@StallionicChampionic

Signed. Lets hope it makes progress!

Hannah015

@Hannah015

Thank you x

Wilf

@Wilf

I've signed and shared on LinkedIn and FB xx

Hannah015

@Hannah015

Thank you @wilf xx

amylee

@amylee

Is this a first line treatment? I didn't know it was available in the UK already but I went to MS life where a neurologist showed this to be very effective. I've signed it and shared on my Facebook. I'm not on any treatment and never have been as I'm very cautious about long term side effects. I will look into this. Good luck, let us know how it goes x

tigerdes

@tigerdes

Thanks for doing this Hannah. I've promoted on all my networks. I'll keep pushing till end of March. Would be great if we could achieve this :)

Hannah015

@Hannah015

@amylee it was approved by NICE for anyone with RRMMS with active lesions and yet so many people aren't being offered it or there are huge delays. That's great thank you Hun. FairPlay to you, I'm not either at moment but I'm waiting for Lemtrada currently, I was paralysed temporarily by my first relapse and my dr says my ms is very aggressive but I have changed my lifestyle to eating very healthily and working out everyday and fingers crossed I'm doing well. Thank you for your help xx

Hannah015

@Hannah015

@tigerdes that's fab thank you I really appreciate your help. I just feel we all need this treatment and so many people haven't even heard of it. Thank you

Stumbler

@Stumbler

@Hannah015 , I've "stuck" this topic, so it doesn't keep dropping out of sight. :wink:

Hannah015

@Hannah015

Thanks @stumbler that's fab

tigerdes

@tigerdes

Getting a great response on my Facebook page and my golf forum with lots signing and sharing. Can we agree a common hashtag for us all to use so if we all start tweeting we can maybe get it trending?

Jonesbear

@Jonesbear

Signed.

Hannah015

@Hannah015

That's brill @tigerdes thank you so much. Hmm good idea, maybe #lemtradapetition

Hannah015

@Hannah015

Thank you @jonesbear x

tigerdes

@tigerdes

@hannah015 that's fine with me. Think perhaps we should set up a thunderclap for mid March and ask people to sign up to support it. Will then allow us to maximise volume at a single point in time hopefully helping us to trend. What do you think?

Hannah015

@Hannah015

Hey @tigerdes what's a thunderclap? Sorry I'm being a bit thick lol Oh my life, I can't believe the negative comments I'm getting on multiple sclerosis talk for my petition, like I'm doing such a bad thing. I think some people forget the saying "if you have nothing nice to say, don't say anything at all" glad people on here are being so nice, thanks all

grahamjk

@grahamjk

Hi @Hannah015 just going to sign now and will post on Facebook if I can work out how to do it. Xx

bonnielassie

@bonnielassie

Petition signed @Hannah015 and will share it with as many people as I can. Sounds like it is a real breakthrough in treatment and well done you for trying to get something done about accessibility. I must say I do find it frustrating when reading comments on here from people who have had the treatment and seem to think we are all foolish for not having it ourselves. Unfortunately here in the UK, things are slightly different (albeit I'm grateful for our NHS). I've yet to start on DMD's and am guessing I will only have a choice of a few, Lemtrada I doubt being one of them. I wish you well with your campaign!! Xx

Hannah015

@Hannah015

Hi @grahamjk thank you so much, lol that's brill x

Hannah015

@Hannah015

Thanks @bonnielassie that's great xx Yeah it seems to have had amazing results I'm hoping I can at least make people aware of this treatment but if I can help get it available for all that qualify according to the guidelines set that would be fantastic. Thank you xx

northernlass

@northernlass

Signed :)

Hannah015

@Hannah015

Thank you @northernlass xx

US-Emma

@US-Emma

@hannah015 & @stumbler So glad this issue is getting press for you & thanks for pinning it @stumbler I am cheering you on from this side of the world! We have our own access issues (training stipulations made by FDA prior to treatment being prescribed/infused) but you really have a legal beef! Lemtrada has been approved as first line on NICE for 8-9 months, assess for patients like you should not be delayed! @bonnielassie I really hope this is an option for you- before you accumulate MS deficits. I am now 40, diagnosed at 29. The past 3-4 years have been really hard, almost giving up and Lemtrada has turned my life around. Don't let good, effective treatments like Lemtrada "miss you". The pain, fatigue, and loss of "self" MS exerts within you is nothing to give in to. @amylee please look into effective treatment. My experience is that MS is a "taker" without remorse that seems to delight in making the patient miserable. So I fight back. I like this old active me and am glad to be getting most of her back :) Good luck to all in this legislative battle :)

tigerdes

@tigerdes

Hi @hannah015 Sorry for the delay I'm away with work. Thunderclap is a crowd amplification programme. You get a whole load of people who care about the same thing to donate their social media profile at a set time on a set day. You then get a lot of the same consistent messages being shared simultaneously which can help boost numbers. Check it out here: https://www.thunderclap.it Great work so far :) Tiger

bonnielassie

@bonnielassie

Thanks @US-Emma, yes I will definitely mention it to my neuro when we discuss DMD's but as I said the NHS here means that I probably wouldn't get it as a first- line treatment. (I was diagnosed in 2003 and had a period of stability for ten years until the past few years where I've had two relapses, hence starting DMD's). But now reading about the possible increased chances of cancer with DMD's and white blood cells, this adds another layer of complexity re what I could have (as i had breast Cancer in 2010 and am obviously fearful of recurrence or spread). Sorry to go a bit 'off topic' but wanted to reply. Hope we get somewhere with Lemtrada

majso

@majso

Signed and reposted on Facebook

Cazzzzzy

@Cazzzzzy

Signed! ... Good for you @Hannah015 ! We need more like you to put up the fight we need! :) xxx

andyc67

@andyc67

Another esig done.. I'm on Rebif .. its not really doing much so I'm going to ask about this Lemtrada stuff.. worth a pop .. Rods Andy

andyc67

@andyc67

RODS? What's that all about ? I meant rgds. .. Regards Andy

JohnathanMac

@JohnathanMac

Signed Sealed and Delivered. I have personally ruled this out as a treatment for me along with Tysabri but if it helps other MS'ers then I'm all for it! :)

Thecuriosity

@Thecuriosity

Discussed it a bit with my nurse today (got onto it because of discussing my neurologists desire to move me to another dmd even though I'm doing fine) we looked over the information she had, and we reckoned the reason it's not being offered, and people are having to chase it is the risk that it puts on the body of having another autoimmune condition move in. It's a big risk but people should still be able to get the information to make their own decision on it. The nurse was telling me only 5 people at the hospital ive been seen at have had it, so people are getting it if they say it's what they want, but it would be good if the nhs trusts could agree on what they're willing to offer rather than it being a hodgepodge. Oh yeah, signed too, good luck.

angelbum

@angelbum

Done sweetie xxx

Tabbycat

@Tabbycat

Signed. You have a very Impressive number of signatures so far . Well done, let's keep pushing!

Hannah015

@Hannah015

Hey @tigerdes Great idea I think that would be brill, I have tweeted lots of celebs and emailed some papers but I think people are afraid to get involved due to their lack of knowledge on the subject, which is fair enough so your idea is fab, maybe do it soon

Hannah015

@Hannah015

Thank you @tabbycat xxx

Hannah015

@Hannah015

So sorry for delay @cassandra that would be brill, I'm hannahmeredith9 thank you so much

Hannah015

@Hannah015

@Cassandra So sorry for delay @cassandra that would be brill, I’m hannahmeredith9 thank you so much

Hannah015

@Hannah015

Thank you @angelbum xxx

Hannah015

@Hannah015

Thank you @majso x

Hannah015

@Hannah015

Hi @Thecuriosity It seems a lot of ms nurses aren't fully informed of Lemtrada. I knew more than my nurse which is a little worrying. Unfortunately there is a risk with all the treatments but we as individuals should have opportunity to decide. There have been people that have developed thyroid problems on Lemtrada trials however this can be controlled with medication. I suppose it depends on whether the individual feels this is a risk they are willing to take. I just feel everyone should be given the opportunity if they wish. Thanks Hun xx

Hannah015

@Hannah015

Thank you @jonathanmac much appreciated xx

Hannah015

@Hannah015

Thank you @cazzzzzy that's very sweet xxx

Hannah015

@Hannah015

Thank you @andyc67 definitely ask Rods ;) Han X

Lina

@Lina

Done Lina xxx

Hannah015

@Hannah015

Thank you @Lina xxx

Emzi

@Emzi

Signed :) x

tigerdes

@tigerdes

Apologies for my absence been caught up with a bit at work. Great work on the petition Hannah. I fear we may be too late to organise a thunderclap but will share again with my networks and see if I can drum up a few more signatories :)

andyc67

@andyc67

My ms nurse has been to a conference this week and she is going to talk to me about lemtrada and a few others like tecfidera and gilenya?? not heard of those last 2 but looking forward to it.. just sharing lol. AndyC

US-Emma

@US-Emma

Hannah, I let me US- Genzyme contacts know about your petition. They said they would pass the issue along to the UK Genzyme people and help with the Lem situation in the UK. I hope this is of some help! You have started a movement here! Emma

Hannah015

@Hannah015

@ericg aww no worries thank you for trying that's really kind, thank you Han x

Hannah015

@Hannah015

Thank you @emzi xx

Hannah015

@Hannah015

Thank you for all your help @tigerdes, I really appreciate all your support. Thank you xx

Hannah015

@Hannah015

Hey @andyc67 That's brill, Lemtrada seems to be the best so far out there so I would choose that if you get the option but the others are new too, just see what they say and how you feel Good it goes well x

Hannah015

@Hannah015

Hey @US-Emma Thank you so much, you may be my new hero :) that's so kind thank you :) hopefully soon everyone will be offered Lemtrada it's only right people get the option :) Thank you again xx

andyc67

@andyc67

mbrsinc.. Please understand that Britain is an old country run by aging wannabes who think they know best , clearly they don't and they don't listen. the 100,000 target is that high on purpose as so us underlings lose all hope and don't try or think for ourselves. Still , we all hope, , , one day! vive la france vive le republic and vive Hannah for her efforts Kind regards AndyC (downtrodden MS suffering Brit)

Mika

@Mika

signed and re-posted on Facebook. I had my first round of Lemtrada in January this year and would hope others will be able to choose to have it as well.

Mika

@Mika

@mbrsinc Yes: EAT! And especially eat a good quality breakfast before the first day, because I didn't eat anything at all thanks to nerves and I have never been more miserable than that very first day - shivers and shakes, fever, rash (continued throughout the treatment but didn't even itch), feeling utterly sick and cold and uncomfortable - BUT it all stopped once the drip stopped. So, this seems to be a regular things to occur - usually on the second or third day I was told - and it will only last those few hours that the drip is in and actually only had it bad that very first day. The other 4 days were okay. The constant interruption at night to check on you and your blood pressure (every 4 hours at night) means that by the end of the treatment you're so knackered - I just slept 14 hours straight once back at home. Now I still have a little niggle in my right foot and still have bladder/bowel problems, but before the treatment I seemed to be diving in and out of relapses every two weeks, so to have only a couple of minor problems is wonderful - and this was only the first treatment.

Mika

@Mika

@mbrsinc Yes, they give you an hour's worth of steroids and antihistamines beforehand and will do whatever they can to make you comfortable. It's all endurable. I just wanted a blanket and curl up and relax, but they checked me for temperature and blood pressure every half an hour during treatment and that didn't help ;-) I'm very happy to have had the opportunity to do this and will have my second blood test next week.

Hannah015

@Hannah015

Thank you @mika hope you have really benefitted from Lemtrada Hun xxx

Hannah015

@Hannah015

Hey @mbrsinc That's brilliant thank you, great your getting Lemtrada, let me know how it goes, good luck and thank you again x

chris

@chris

Signed with pleasure. Chris

Hannah015

@Hannah015

Thank you @chris x

KrisP

@KrisP

Is this still not available? I thought thks was approved late last year There is a chap currently going through the treatment writing a blog I'll find the link as it looks good reading, I think it's a first line therapy for him too?

Hannah015

@Hannah015

@krisp it was approved in May 2014 but it's only available at certain hospitals in England. Many hospitals either won't offer it or can't due to it not being set up despite NICE guidelines stating it should be offered within 3 months of approval. I'm hoping I can get it available to everyone who wishes to have it who for criteria set out by NICE. That would be brill thank you :) x

KrisP

@KrisP

This is the blog I was talking about I'm always skeptical of these as I know sometimes the drug companies sponsor them but this looks genuine to humble moi http://tribewardle-ms-journey.blogspot.co.uk/?m=1

kellydlugosz

@kellydlugosz

I had my two doses of lemtrada and DO NOT recommend. I am suffering now with hyperthyroidism (Graves' disease) and its cause more of a nightmare than anything. After the second treatment in aug 2020 (nightmare covid times) I ended up getting just about every infection possible. I'm sure each person will experience their own circumstances, however I do not recommend this treatment.

nix26

@nix26

hi guys, sorry a bit late to the party but what are the current rules re access to Lemtrada on the NHS? I tried to click on the petition link but it doesn't work for me, possibly due to the fact that I'm in HK. I was diagnose 10.5 years ago with RRMS but I think SPMS is starting to creep in as certain things like walking and numbness just haven't improved for a few years now. I'm in Hong Kong but am British, am wondering if I should consider moving back to the UK to try and get Lemtrada treatment. but sounds like this might be difficult for most people? Any help/experiences much appreciated! Sorry to piggy back on this post @Hannah015 !