Ibrutinib petition: Hi all Firstly sorry for the... - CLL Support

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Ibrutinib petition

Mick491 profile image
Mick491

Hi all

Firstly sorry for the repeat as i know many of you have seen my petition about getting NHS England to follow NICE guidelines which would enable me to be treated. Recently I have recieved a couple of requests for the link so I repost it below. If you see my last post my situation has deteriorated and my consultant is treating the symptoms not the cause. It's hoped to keep me going and well enough for a trial that maybe available in August of which Ibrutinib is used.

If you have not already signed the petition please do and please share with your friends and family. Thankyou

Mick Smith MBE

petition.parliament.uk/peti...

43 Replies

Hi Mick491,

I’ve contacted a friend in the media for ideas on how ti get your story out there...I will let you know if he has any ideas. I also just wanted to know, if you don’t mind sharing why Sean didn’t publish your story? It would be amazing to get this out so that you can raise the number of signatures. The NHS can’t simply decide this can they? Surely they have to abide by NICE guidance? It’s fraudulent! Have you had any media interest at all?

Mick491 profile image
Mick491 in reply to CAHP

Sean rang me and read out what he had written and said if it was going in it would be tomorrow (couple weeks ago) not heard since. Press wise my local paper the Nottingham Evening Post are doing an article today 15 June. I'm happy to speak to anyone to raise the profile of this problem.

CAHP profile image
CAHP in reply to Mick491

Have you tried contacting him again to ask when it’s going in - I know you have a lot on your plate but if you can’t oush for this then what can you push for! It’s paramount for you and for others to follow. This as you know will be a great platform to spread the word and everything must be done to ensure it goes in the newspaper!

That’s great news about your local paper - possibly the tabloids will pick up on it - they always like a negative and unjust story! I note you have an MBE, what is that for if you don’t mind disclosing?

Did I mention I wrote to This Morning last night - I’ll let you know if they get in touch!

Also my friend in the media recommended contacting McMallian as they have a big PR outfit. Have you spoken with them at all? If not is it something you would pursue? What about the CLLSA? They have will have someone...? Let me know and if I can assist in any way just shout.

Mick491 profile image
Mick491 in reply to CAHP

Yes been in touch with Sean today. No mention of it but he's looking out for the local article. Sean says NHSE are digging in. MBE was for services to my local community. 're CLLSA I wrote petition after liaising with David Innes the chair and also Nick York from Leukaemia Care. I think I've done all I can. The results of this will be too late for me but will help those who follow.

CAHP profile image
CAHP in reply to Mick491

He’ll do it if he can I’m sure! You’ve done great! It’s so hard when you want to spread the word but don’t know how to go about it...especially nationally, it’s daunting! I just want as many people to know as I’m so worried we may need access to this one day and I’d like it there. Can I just ask one more things did David and Nick say they would help you to publicise the petition? And if so what are they doing?

Many thanks

Unfortunately, as far as i can understand it, it doesnt seem NICE is on our side in this battl-seee a statement issued by NHS England 7 days ago. All the best Antony

Jm954 profile image
Jm954Administrator in reply to ornstin

That's true but we have to keep trying ornstin.

CAHP profile image
CAHP in reply to ornstin

What are NICE saying? I’m new to all this? Any link?

ornstin profile image
ornstin in reply to CAHP

I'm sorry I'm technologically hopeless and don't know how to send link. Google "NHS England Ibrutinib" and I think the statement will come up. My interpretation(and I be wrong) is that NICE are suggesting that NHS England have some sort of discretion in this matter. But NHS also indicate that they might be willing to revise their guidance if clinicians request. The NHS statement seems confirmed by a veryrecent addition on the NICE Ibrutinib guidance pages.

I think you are absolutely right to repost. I have already signed and widely circulated...because of the injustice of it all, but admit to being a tad disappointed that the numbers are creeping up so slowly. Just so you know my brother in law's MP said he would write directly to Jeremy Hunt which was very helpful. However, I fear further media attention is required to boost petition numbers (I am probably very near to first treatment....having been told yesterday I was too unwell to have a couple of skin biopsies done. Better to await PET scan result to determine next steps...)

Sorry you are struggling at the moment....I really hope you get the treatment you need asap.

Mick491 profile image
Mick491 in reply to ABP45UK

I agree about media. There's an article going in my local paper the Nottingham Evening Post today but it's not much. Thanks for the good wishes

pkguk2 profile image
pkguk2Administrator

Thankyou for re-posting the petition link again and for the reminder that we need as many signatures as possible. CLLSA are working hard to keep this topic alive and have made representations to NICE and NHS England. The latest responses are not encouraging, and they clearly the hope that we will go away. We won't, and the pressure must be kept up. I hope, when needed, that you will be able to receive the treatment all CLL patients deserve.

Mick491 profile image
Mick491 in reply to pkguk2

Thankyou

Hi mick, i hope its not too late to sign the petition. Have filled it in but on the last bit it says'yes this is my email address' i clicked it and another statement came up saying click the link in this email. Siz but i cudnt go any further. Do u know what i did wrong? X

Hope u r doing ok x

Hi mick, please ignore the last post. I have found out how to do it. I started chemo on the 13th july so perhaps i didnt read yr email/post. I have forwarded the petition to a few friends and will see what i can do from this end . Good luck

Mick491 profile image
Mick491 in reply to lucyjack

Many thanks luckyjack. Chemo worked for me first time round and its 8 years now till I need treatment. So good luck to you and thanks for the support on the petition. Please ask family and friends to help as we really need that 10 k Mark. Take care and stay healthy.

lucyjack profile image
lucyjack in reply to Mick491

Will do. Been busy texting and emailing all night x will sleep on it and carry on tomorrow x

Mick491 profile image
Mick491 in reply to lucyjack

Many thanks

Hi mick, av been canvassing fot people to sign yr petition. I was stopped going into halfords by a woman. She asked av u thought about a will? I said not at the moment as im having chemo and dont want to think about it but i do have elderly oatents who need to make one. Anyway i rang my parents and asked if i coukd give their names to which they agreed. I then asked her to do me a favour and sign yr petition and pass it on to her son and daughter. Easy peasy - another three. I keep watching the count go up x

Mick491 profile image
Mick491 in reply to lucyjack

Your a star, thanks.

Hi mick, im still working on getting yr petition signed. I am using any opportunity to recruit. Tescos staff, nursing home staff and tomorrow i plan to canvas my hairdressing staff. I keep checking the total. It good to see it creeping up x

Much appreciated. Unfortunately things not going to well here. Had to contact consultant Wednesday. Upped meds. Phone consult Friday but have to go in Tuesday. Unwell at the moment and because Ibrutinib was the consultant recommendation but can't prescribe not sure of options. Please please keep asking for support on the petition.......thanks

Hidden profile image
Hidden in reply to Mick491

Did you look into seeing a specialist in Scotland, they have approved Ibrutinib as a second line therapy or with certain mutations.

It might be a long trip depending on your distance but is one possible avenue.

Stuart

AdrianUK profile image
AdrianUK in reply to Hidden

He’d have to have an address in Scotland and move there. Not sure for how long....

Hidden profile image
Hidden in reply to AdrianUK

I wasn’t sure about that, I just presumed being part of the NHS there maybe a way around it

AdrianUK profile image
AdrianUK in reply to Hidden

Funding decisions are still based on where you live. Not sure how long you have to live in a new place to come under their rules. It might be instant.

Hidden profile image
Hidden in reply to AdrianUK

I saw some patients that needed treating for mental health in the news and others illnesses had been referred to areas of Scotland from England thru the NHS and vice versa.

I know you have catchment areas for GP’S but I wasn’t sure if there was a possibility of getting referred to a specialist in Scotland from his current team and if so they had the authority to prescribe him with Ibrutinib based on their laws and decisions.

AdrianUK profile image
AdrianUK in reply to Hidden

Technically you can be cross referred to Scotland but the English CCg would pay for that so you’d come under English rules. If you moved house though....

Hidden profile image
Hidden in reply to AdrianUK

I thought it might have been a possible loop hole for him to explore out of desperation but I doubt he’d be able to move house so unfortunately looks like it’s going to come down signatures on the petition and the hard work of some of the members on this site and external sources battling his and our corner.

Mick491 profile image
Mick491 in reply to Hidden

Thanks for the the thoughts guys but my understanding you have to have a permanent residential address in either country. The issue is the on going treatment is regular and for life. So it's a lifetime move. Some could do it but I have close family ties and I would sooner battle for treatment here than live somewhere without my family. For me things are coming to a head as I've taken ill again and the consultant has called me in for a review on Tuesday in the meantime he's increased the prednisone.

Hidden profile image
Hidden in reply to Mick491

Sorry to hear your suffering Mick. How many more signatures do we need on the petition as I’ve got an avenue I can explore.

Doesn’t sound like you’ve got time for any case to be heard by MP’s to make any parliamentary changes. Have you spoke to a specialist about Venetoclax as I know there are some specialists prescribing that as a second line therapy?

Mick491 profile image
Mick491 in reply to Hidden

The petition was at 5746 yesterday so a way to go yet. NHSE are reviewing new evidence at the end of this month so we will have to see the outcome of that. The consultants plan for me is to get me on a trial coming out in August of Ibrutinib and venetoclax. He did mention IV steriods for a week to boost me till then. But it's all going to come down to results when I see him Tuesday. I just don't want to get so weak he can't treated and that's the way I'm going. I have every faith in my clinical team tho.

Hidden profile image
Hidden in reply to Mick491

That sounds like the clarity trial with that combination which if you tolerate both therapies looks very promising, I’ve read some people have become MRD after 18 months on that and have discontinued both treatments. I read Ibrutinib and Venetoclax work hand in hand with Ibrutinib making Venetoclax work more efficiently.

I was in a very bad way before I started treatment and needed a few blood transfusions before I started treatment but I’m much better thanks to the trial I’m on.

Hang in there and good luck

Stuart

Mick491 profile image
Mick491 in reply to Hidden

Thanks Stuart. If I can get on it I have high hopes. The discussion I had with my consultant I think I would prefer the trial rather than just Ibrutinib. I just hope it is available in August. Stay well.

Hidden profile image
Hidden in reply to Mick491

I’m currently taking Ibrutinib as part of the flair trial but I had six infusions of Rituximab in the beginning.

Don’t get me wrong Ibrutinib is an amazing drug on its own but it’s needed as an everyday possible lifelong or long duration therapy and can’t be discontinued but the desired goal is to reach MRD status and get on living your life which with the trial your looking at you have every chance.. there was even talk it could be a possible cure for some but obviously you need lifelong data to support that which they haven’t got at the moment.

Stuart

Hi Mick

I live in Scotland and if my address can be used as your residence by all means use it. Message me and I’ll give you the details.

I have signed your petition and read the article and hoped that by now you were allowed to have the treatment to save your live.

I keep thinking on what else could be done.... couldn’t the medication you need also be bought privately? We could set up a crowd funding page. Maybe this would also make the media more interested on the matter.

Every year 3,000 ppl are diagnosed with this illness and only 5,000 signed? How is this even possible?

Mick491 profile image
Mick491 in reply to Flabal

Thanks for your kind offer. I have family and friends in Scotland but it's a bit more complicated than that. The move would need to be permanent as you need constant appointments and blood tests etc. The drug is for life. So using an address is not that simple.

The drug is over £6000 per month and even if the cash was raised I would have to go private to get it prescribed and that would mean coming out of the NHS altogether and I have a number of other medical problems so that not really an option either.

As regards the signatures I am surprised at the low response. I have emailed everyone I know explaining what the wording means. I don't know how we can get the message further out there.

Again Thankyou sincerely for the kind offer. Unfortunately my fate rests here....

Flabal profile image
Flabal in reply to Mick491

Mick

We are all behind you. We know you need this and whatever we can do we will.

I sincerely hope NHS will wake up to the damage they are causing you. And give you the medication you need.

I’m sorry my ideas weren’t so good. But maybe someone here will be able to come up with something that works for you.

Flavia

Mick491 profile image
Mick491 in reply to Flabal

You are very kind and I am very grateful for your offer and support Flavia

Flabal profile image
Flabal in reply to Mick491

This is the least I can do Mick. You are in my thoughts.

Hi mick, how r u doing? Just a thought - been for my pre chemo review and asked one of the nurses to sign yr petition. Was very surprised that she did not know anthing about it. She put it on her facebook to get some more signatures. My thinking is that if they werent aware of it many more medical staff wont b. If u could get a message to anyone visiting hospitals to ask, it is another way of 'upping' the score. Im still working on it x

Mick491 profile image
Mick491 in reply to lucyjack

Thanks. I'm in hospital tomorrow and will have a word too.

lucyjack profile image
lucyjack in reply to Mick491

Good luck x

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