Petition against NHS England and use of Ibruti... - CLL Support

CLL Support

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Petition against NHS England and use of Ibrutinib

Mick491 profile image
68 Replies

Dear all

Following the Times revelation about NHS England going against NICE recommendations I have begun a petition to get them to follow those guidelines so people like me who have survived more than 3 years can be treated with it.

Please sign the petition and share the link. Thank you.

Mick Smith MBE

petition.parliament.uk/peti...

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Mick491 profile image
Mick491
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68 Replies
Gailandbert profile image
Gailandbert

Hello

I have just signed. I will mention it at the CLLSA conference in Birmingham this Thursday.

Thanks for starting this .

Mick491 profile image
Mick491 in reply to Gailandbert

Thankyou. Please share too.

Gailandbert profile image
Gailandbert in reply to Mick491

Hi . Just sent the link to my address book

zaax profile image
zaax

just signed

Mick491 profile image
Mick491 in reply to zaax

Thankyou please share too.

Elizabetha profile image
Elizabetha

Done.

Mick491 profile image
Mick491

Thankyou. Please share the post too.

keepfit123 profile image
keepfit123

Just signed

Cheers, keepfit 123

Mick491 profile image
Mick491 in reply to keepfit123

Thankyou please share too

Wroxham profile image
Wroxham

Signed mick491

Sue

Mick491 profile image
Mick491 in reply to Wroxham

Thankyou please share too

Wroxham profile image
Wroxham in reply to Wroxham

It's now on Facebook as a post and shared.

Sue

Mick491 profile image
Mick491 in reply to Wroxham

Thankyou.

PE1234 profile image
PE1234

Signed

Brenda

dandelup profile image
dandelup

Well done Mick you have my support and will share with as many as possible.

Mick491 profile image
Mick491

Thankyou. Hope it makes a difference

Shooey profile image
Shooey

Myself and partner signed

Mick491 profile image
Mick491 in reply to Shooey

Many thanks please share too

mrsjsmith profile image
mrsjsmith

Just signed as well. Colette

Mick491 profile image
Mick491 in reply to mrsjsmith

Thankyou please share too

opal11uk profile image
opal11uk

done

Katie57 profile image
Katie57

Signed and shared. Katherine

Ruhi9 profile image
Ruhi9

Just sign it. Ruhi

Mick491 profile image
Mick491 in reply to Ruhi9

Thankyou please share too

Mick5329 profile image
Mick5329

Going to do it now Mick good luck.

Mick491 profile image
Mick491 in reply to Mick5329

Thankyou please share too

catygr profile image
catygr

Just signed your petition Mick491. I hope you get lots of support.

Mick491 profile image
Mick491 in reply to catygr

Thankyou please share too

Spiritlove profile image
Spiritlove

I have signed x

Mick491 profile image
Mick491 in reply to Spiritlove

Thankyou please share too

Spiritlove profile image
Spiritlove

I have just signed x

terryI_uk profile image
terryI_uk

Just signed and shared Mick, God bless, Terry

alexmcg48 profile image
alexmcg48

Signed & passed to friends & family to get them to sign as well.

Cjmc12 profile image
Cjmc12

I'm not a Brit. Sorry, can't sign. What is this all about.

Newdawn profile image
NewdawnAdministrator in reply to Cjmc12

This post explains;

healthunlocked.com/cllsuppo...

Newdawn

devonrr profile image
devonrr

Just signed. 697 so far. Need lots more.

Mick491 profile image
Mick491

We need at leat 10k to get a response

Newdawn profile image
NewdawnAdministrator

Signed and am writing to my MP.

Newdawn

Mick491 profile image
Mick491 in reply to Newdawn

Thankyou

Peggy4 profile image
Peggy4

Struggling with this. I tried last night and today. Takes me right through to the end then just won’t finish loading. Will keep trying.

Peggy

Peggy4 profile image
Peggy4

Got it! E mail had gone into my junk box. All done plus family and friends.

Peggy😀

Mick491 profile image
Mick491 in reply to Peggy4

Many thanks 1199 at the moment.

PaulaS profile image
PaulaSVolunteer

Signed and shared.

Paula

Mick491 profile image
Mick491 in reply to PaulaS

Thankyou

Satsuma12 profile image
Satsuma12

Signed and shared.

AdrianUK profile image
AdrianUK

Over 1000 people now. Told my social media contacts again as people like to back something that’s getting some traction. We can do this!

Mick491 profile image
Mick491

Thankyou

Me2AsWell profile image
Me2AsWell

1647 signatures and counting - we need to reach 10,000 minimum. Where is that viral effect? :) Please pester friends, family (and even strangers!) I have tried to help people understand that if we let NHS England get away with this, they will play similar games with other life-saving drugs. Feel free to lift from this if it helps at all:

"Dear Friends,

I need your help. Actually by doing this you will be helping yourselves as NHS England (but not Scotland and Wales) has decided to start playing games with the NICE guidelines. NICE governs the availability of cancer drugs for us all. Ibrutinib is on such drug – taken once a day it holds chronic lymphocytic leukaemia at bay. This is crucial as curative breakthroughs seem to be imminent.

There is no reference to a remission timeframe within the NICE recommendation to use ibrutinib, yet NHS England has said that it will not prescribe it if CLL patients have been in remission for more than three years. This would condemn people who have been through FCR chemo therapy once already to repeat the exercise.

Just over three years ago, I underwent the recommended FCR chemo for CLL. It nearly killed me, twice. Once during the initial administration of the chemo (I had to be resuscitated by nurses on an emergency basis) and once because my neutrophils were so low I had to be rushed to hospital in an ambulance, and stayed there for four days.

A second round of FCR chemo would at best give remission for 18-24 months ... and then patients would finally be eligible for ibrutinib ... but only after they have undergone another round of poisoning their body and further compromising their already fragile immune systems. This is a classic example of short-term penny-pinching without reference to the long-term costs.

NHS England has a legal obligation to fund drug indications considered by NICE to be cost-effective. We need NHS England to fund access to ibrutinib for all patients for whom NICE has deemed it to be cost-effective so that CLL patients have the access they need and deserve.

Please take a minute to sign this petition petition.parliament.uk/peti... and share this email with friends – rational decision-making in an economically stretched NHS and our future access to life-saving drugs depends on it."

Mick491 profile image
Mick491

Many thanks for putting your weight behind this. I have sent it to all my friends and family some coming back to ask questions which I'm happy to answer. So please folks get this moving.

ABP45UK profile image
ABP45UK

Thanks for starting this petition. I have signed and shared widely.

Mick491 profile image
Mick491

Thankyou it's appreciated. Just hope we get the minimum 10k

Fran57 profile image
Fran57

I've just signed and will ask family and friends to do the same.

Thank you for this.

Fran 😉

Mick491 profile image
Mick491 in reply to Fran57

Thankyou

Mick491 profile image
Mick491

Thankyou

AdrianUK profile image
AdrianUK

Well over 2000 today. So keep posting. And keep sharing.

Mick491 profile image
Mick491

Slow but sure. We need that 10k

Wroxham profile image
Wroxham

parliament.uk/business/publ...

Ibrutinib:Written question - 144154

Like

Comment

This was posted by Steve Garner on another site. Does it answer the question?

Mick491

Sue

Mick491 profile image
Mick491 in reply to Wroxham

There seems to differing views. But interesting.

Me2AsWell profile image
Me2AsWell in reply to Wroxham

It looks to me like a weasely worm-out ... unless he then specifically instructs NHS England to stop this short-term penny-pinching policy. But, nonetheless, I've forwarded the response to NHS England telling them that this is a clear instruction to reverse the policy and would encourage others to do the same. I also forwarded it to my MP and the Department of Health. Let's keep pushing on this!

Wroxham profile image
Wroxham in reply to Me2AsWell

I couldn't agree more, hard to figure

Out how to beat the official word.

They are politicians after all.

The company maybe? Down to Mick

really to decide.

Sue

mrsjsmith profile image
mrsjsmith

Hi again Mick,

Keeping an eye on the petition and the numbers are creeping along very slowly. I have just signed one on Change.org about saving Scottish wildcats and it is already at 25.000 signatures. I am not remotely technical but have you thought about switching to Change.org or 38 Degrees ?

Regards

And good luck with managing to get Ibrutinib

Colette

Mick491 profile image
Mick491 in reply to mrsjsmith

I think the message get to potential signitories through how its spread through people on social media. This type of thing is very technical and most people are not worried by it. I had hoped for a better response though . That said we have got 500 today and are a quarter of the way. But thanks for your comment.

Mick

mrsjsmith profile image
mrsjsmith in reply to Mick491

Thanks and I hope the numbers keep rising, and I have forwarded to a number of friends.

Regards

Colette

Mick491 profile image
Mick491 in reply to mrsjsmith

Thankyou

norahmaria profile image
norahmaria

Signed and shared

Mick491 profile image
Mick491

Many thanks

Molly777 profile image
Molly777

Thankyou Mick for starting this petition. My family have all signed and now posted on FB pages too . I need to go on this drug and it must become available to everyone who needs it for their CLL and through the NHS

Mick491 profile image
Mick491

Thankyou Molly. This maybe a little late for me but hopefully it will be sorted when you require it.

Mick

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