hannah015 19/02/15
Last reply 3 years ago
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

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stumbler
3 years ago

And, here’s a link to go straight to this petition :-

http://epetitions.direct.gov.uk/petitions/74987

πŸ˜‰


tracyd
3 years ago

Signed, reposted on Facebook and about to start a bit of a social media campaign on the subject πŸ™‚ xx


hannah015
3 years ago

That’s fab @stumbler thank you


hannah015
3 years ago

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


stumbler
3 years ago

@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. πŸ˜‰


hannah015
3 years ago

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


stumbler
3 years ago

@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
3 years ago

About my petition or the treatment? @stumbler x


stumbler
3 years ago

About the delays in treatment, @hannah015 . πŸ˜‰


hannah015
3 years ago

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
3 years ago

Totally agree with your arguments, @hannah015 .

Another “SNAFU” by our over-stretched NHS! lol πŸ˜†


hannah015
3 years ago

Thanks @stummbler


hannah015
3 years ago

Not sure how my message changed there lol @stumbler

What’s SNAFU mean lol


stumbler
3 years ago

@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

πŸ˜‰


Anonymous
3 years ago

Signed


hannah015
3 years ago

Lol @stumbler that’s my new thing now


hannah015
3 years ago

Thank you @sandwich


tracyd
3 years ago

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 πŸ™‚


hannah015
3 years ago

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


stumbler
3 years ago

@hannah015 , @tracyd has prompted me to post this petition on the Maggotdrowners forum. It’s one of the largest UK fishing forums. πŸ˜‰


Anonymous
3 years ago

Has it been posted on the MS Society website? If not I’m happy to.


hannah015
3 years ago

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


hannah015
3 years ago

@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 πŸ™‚ I have emailed my local mp to help and posted to jack Osborne lol


tracyd
3 years ago

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
3 years ago

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


tracyd
3 years ago

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 πŸ™‚
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 πŸ™‚


tracyd
3 years ago

OMFG it’s been retweeted by celebrity chef Nathan Outlaw !!!!! πŸ™‚ πŸ™‚ πŸ™‚ xx


hannah015
3 years ago

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


tracyd
3 years ago

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 πŸ™‚ xxx


hannah015
3 years ago

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 πŸ™‚ thank you so much @tracyd xxxx


tracyd
3 years ago

And now Daniel Clifford ….. If James Martin wants me on Saturday Kitchen I am so going πŸ™‚


hannah015
3 years ago

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


glasshalffull
3 years ago

Just signed up. Good luck with it.


hannah015
3 years ago

Thank you so much @Glass1/2full


graham100
3 years ago

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
3 years ago

Hey @graham100

Thank you that’s great


hannah015
3 years ago

Not sure what happened to my message it was really long πŸ™

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
3 years ago

@graham100

Not sure what happened to my message it was really long πŸ™

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

Signed. Lets hope it makes progress!


Anonymous
3 years ago

Hannah, I will sign. @graham100 I really don’t identify with your healthcare system. You should have some discretion in choosing YOUR treatments. What good is having great innovations (the biggest originating at Cambridge) approved in countries where you are denied access? Please explain where I am wrong or why you guys have to accept. If we don’t like what we are told, we leave and change neuros. We all eventually run out of time with MS as CNS damage continues. Just curious how is it suppose to work if you cannot use the best?


hannah015
3 years ago

Thank you x


wilf
3 years ago

I’ve signed and shared on LinkedIn and FB xx


hannah015
3 years ago

Thank you @wilf xx


amylee
3 years ago

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
3 years ago

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 πŸ™‚


hannah015
3 years ago

@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
3 years ago

@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
3 years ago

@hannah015 , I’ve “stuck” this topic, so it doesn’t keep dropping out of sight. πŸ˜‰


hannah015
3 years ago

Thanks @stumbler that’s fab


tigerdes
3 years ago

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
3 years ago

Signed.


hannah015
3 years ago

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


hannah015
3 years ago

Thank you @jonesbear x


tigerdes
3 years ago

@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
3 years ago

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
3 years ago

Hi @hannah015 just going to sign now and will post on Facebook if I can work out how to do it. Xx


bonnielassie
3 years ago

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
3 years ago

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


hannah015
3 years ago

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
3 years ago

Signed πŸ™‚


hannah015
3 years ago

Thank you @northernlass xx


us-emma
3 years ago

@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 πŸ™‚

Good luck to all in this legislative battle πŸ™‚


tigerdes
3 years ago

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 πŸ™‚

Tiger


bonnielassie
3 years ago

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
3 years ago

Signed and reposted on Facebook


cazzzzzy
3 years ago

Signed! … Good for you @hannah015 ! We need more like you to put up the fight we need! πŸ™‚

xxx


andyc67
3 years ago

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
3 years ago

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


johnathanmac
3 years ago

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! πŸ™‚


thecuriosity
3 years ago

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
3 years ago

Done sweetie xxx


tabbycat
3 years ago

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


hannah015
3 years ago

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
3 years ago

Thank you @tabbycat xxx


hannah015
3 years ago

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


hannah015
3 years ago

@Cassandra

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


hannah015
3 years ago

Thank you @angelbum xxx


hannah015
3 years ago

Thank you @majso x


hannah015
3 years ago

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
3 years ago

Thank you @jonathanmac much appreciated xx


hannah015
3 years ago

Thank you @cazzzzzy that’s very sweet xxx


hannah015
3 years ago

Thank you @andyc67 definitely ask

Rods πŸ˜‰
Han
X


lina
3 years ago

Done

Lina xxx


hannah015
3 years ago

Thank you @lina xxx


Anonymous
3 years ago

I tried to sign but “You must be a British citizen or normally live in the UK to create or sign e-petitions.”. Having MS is not sufficient ;-(, we live in different worlds.

Warm regards,
Eric


emzi
3 years ago

Signed πŸ™‚ x


tigerdes
3 years ago

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 πŸ™‚


andyc67
3 years ago

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


sarfrazarif
3 years ago

Signed sealed and delivered πŸ™‚


us-emma
3 years ago

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


Anonymous
3 years ago

Emma meant that she let her contacts at Genzyme know about your petition. I cannot believe that you need 100k signatures. That is a huge number! An American petition to petition our FDA to approve Lemtrada only had a fraction of those signatures to successfully move the FDA to approve Lemtrada in the states.

More importantly, you are doing a great job! Please put some of your energy and this blog to convince younger patients to learn what an important step wise improvement in MS treatment Lemtrada is. I want to cry when I see them talking about using injections of yesterday’s treatments leaving themselves open to further damage. It is dumb luck what will be damaged during their next attack. Damage goes on even between these break outs. We need more awareness that all DMDs come with risks and get over it! Go with the only one to demonstrate that it could halt the damage instead of slowing it down.


hannah015
3 years ago

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


hannah015
3 years ago

Thank you @emzi xx


hannah015
3 years ago

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


hannah015
3 years ago

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
3 years ago

Hey @us-emma

Thank you so much, you may be my new hero πŸ™‚ that’s so kind thank you πŸ™‚ hopefully soon everyone will be offered Lemtrada it’s only right people get the option πŸ™‚

Thank you again xx


andyc67
3 years ago

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)


Anonymous
3 years ago

Andy,
I have been an avid observer on this blog, and have been amazed and somewhat horrified by what I have read as the US current administration has tried to drag us toward a UK styled healthcare system. Being very sick with a relentlessly advancing disease, I want the most advanced healthcare fast, and I seldom use the words advanced, fast and government in the same sentence! I am hoping to get Lemtrada behind me before it or any other treatment can be taken away. Best Wishes!


mika
3 years ago

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.


Anonymous
3 years ago

@mika,
Getting ready to start. How did it go for you and have you noticed any difference in your condition yet? Do you have any recommendations?

Thanks


mika
3 years ago

@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.


Anonymous
3 years ago

@mika,
You are literally the first to report to me any side effects! Did they pretreat you with steroids and antihistamines? I am very sensitive to everything and expect to have trouble, but it is fantastic that you are already seeing improvements? I would bet based on reports that improvements occur for years that you will make a full recovery! I am so glad for you. You sound like me last year. I went from relapse to relapse, very tough! Thanks for your update!


mika
3 years ago

@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 πŸ˜‰
I’m very happy to have had the opportunity to do this and will have my second blood test next week.


Anonymous
3 years ago

@mbrsinc :

Sanofi/Genzyme “reservΓ© aux patients ayant prΓ©sentΓ© une rΓ©ponse inadΓ©quate Γ  deux mΓ©dicaments ou plus indiquΓ©s dans le traitement de la SEP” : reserved to patients with inadequat response to at least two other MS treatments”

Sanofi/Genzyme “le ralentissement de la progression du handicap n’a toutefois pas Γ©tΓ© statistiquement significative” : the slowing down of the handicap development turned out to be not significant”


Anonymous
3 years ago

Hannah, I will be going to one of the largest MS centers in the southeast US next week to start Lemtrada. I will share with the doctors and patients there your mission to make Lemtrada readily available in the UK while I spend a week getting drips. I will have lots of time to share to see who can sign and help in other more meaningful ways hopefully. You never know who knows someone that has influence. Keep up the great work!


hannah015
3 years ago

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


hannah015
3 years ago

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
3 years ago

Signed with pleasure.
Chris


hannah015
3 years ago

Thank you @chris x


krisp
3 years ago

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
3 years ago

@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 πŸ™‚ x


krisp
3 years ago

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

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