Morning
My husband had his appointment at the hospital yesterday (down to 50% in 5 months so very pleased with that), and his specialist nurse seemed completely unconcerned when I asked her about the NICE recommendations and told her I'd been emailing MPs and newspapers etc for the last few weeks. She said not to worry, it was completely unethical and wouldn't happen, and that if we needed the treatment the pct would give it to us! I wasn't sure what to think really, except that as she's working on the frontline, these recommendations are far removed from her daily schedule and maybe she's just not aware of how serious they are. Just wondered if anyone else had encountered this?
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Hospital feedback re NICE
Hi
I also had my appointment yesterday and discussed with my heamotologist and his reply was that he has wrote to nice and he has also signed the petition as have the nurses. He also stated that yes it is worrying but we should not worry to much as the decision has not been made and that there are other avenues for us to go down to get the funding if/when we need to. I think the specialists etc are trying to not make us worry even though there maybe a fight in future to get the drugs we need.
Hope this helps slightly
Thanks
Naomii
When this reared up last time, Sandy urged us all with upcoming appointments to mention the appraisal and petition to our Hospital consultants....which I did. His reply was that he would continue to prescribe it regardless of the outcome and that he would leave the fight to those who could "do it better than him." At this point, the Nurse chimed in...wait for it..."Life's too short"!!!!!!!!!! When I picked my jaw up from the floor I did mutter something along the lines of "Yes, for some it could become even shorter." When you've done gasping, I will just say that she has not been in clinic since.
I believe that my Consultant was meaning that the PCT would allow it..
That's all.
Vickie
If this ACD is confirmed by the NICE appraisal committee on June 9th and it goes to a FAD (final appraisal determination) well yes, in theory it can go to appeal, BUT this is a far more difficult process. The right to appeal can ONLY be on grounds that NICE did not follow correct procedure. Usually appealing a FAD goes to 'judicial review' and takes some time as well as expensive legal expertise.
So better not to let it get that far.
If 4 UK professors of haematology thought the NICE ACD an important enough threat that they took time to write a strong letter of protest to The Telegraph I think that your doctor might be a little out of the loop.
NICE is an arms length government body and as such is subject to political pressure... this ACD reflects NICEs' desire to survive and even expand, they can do this by helping the government to achieve the £20 billion NHS 'efficiency savings'asked for.
Hence the petitions and letters/lobbying of MP's etc.
CML Support Group have sent official letters to Sec. of State Andrew Lansley (DoH), Earl Howe (Minister responsible for NICE), Sec of State Vince Cable (dept for Business Innovation and Skills), John Healey, John Baron and Stephen Dorrell expressing in no uncertain terms why the government need to ask NICE to reconsider this ACD.
MP Stephen Dorrell (Chair of the Health committee) in a recent statement recognised that to make £20 billion NHS efficiency savings over 4 years is an aspiration that is unlikely to be met.
All the recent actions of our members regarding this ACD should not be dismissed as unimportant by a less than politically aware doctor and/or nurse. I imagine, as Naomii said, your doctor was trying to stop you worrying.
But the danger is for those who might soon need access to 2nd gen TKI's and also for people diagnosed in future (around 560 or so a year in UK) 40% of whom will either be intolerant of 400mg imatinib, have a sub-optimal response or develop resistance.
The intolerant group will be offered either Interferon, stem cell transplant if eligible and can find a donor, and/or Hydroxycarbamide... very cheap but has no effect on the cause of the disease and few would survive more than 3-5 years.
The resistant group would not have a chance to try a higher dose of imatinib, nor offered 2nd generations drugs unless they could get them on the CDF. They could try to get into a clinical trial... or take their chances with the other treatment options outlined above. Of course they could move to Scotland or another Eu country!
Should NICE translate this ACD to a FAD, the PCT'S will inevitably understand it as the writing on the wall and more of them will refuse to fund, suggesting that doctors access it through the Cancer Drugs Fund. If you find yourself at the back of an already long queue (this fund is for all innovative cancer therapies) then it might take a while to get access to the paperwork and then jump all the inevitable hurdles- which I believe is not an easy task. £200 million in any one year will not last long given the innovative drugs already coming down the line for other cancers.
This is not a fight we should lose at this stage.
BTW NICE? I don't think so! is still going strong and is currently at 5852 with the original Be NICE to Cancer Patients (for IM intolerant CML at 2983
Keep tweeting/ and sharing on Facebook
Sandy
I'm devastated that you thought I was dismissing the work of the members of this group as unimportant. Nothing could be further from the truth. My message was one of surprise that the specialist nurse was so unaware and dismissive of the nice recommendations. I'm so sorry if I offended you or anyone else here. I have also been writing and emailing anyone I thought would have any influence, and have spent the last two days contacting everyone I know and everyone they know to sign the petitions, so I do understand how crucial these decisions are. I'm so sorry, I think what has been achieved by this group is amazing.
Please don't think my words were directed at you.... I understand entirely why you would be upset by your doctor's attitude and it was his words that prompted my post.... Please in turn I hope you accept my apologies to you ;o) I reacted a little angrily - we are all working hard- but it was not directed at you.
Thank you for helping with the petition- it has grown beyond all anyone's expectations and I am so gratified that this threat to CML patients in the UK has galvanised all of us to work together for such an important cause... maybe not only for ourselves but also for others who will be diagnosed in future.
Best wishes,
Sandy