Still waiting for anti tnf

[sappy]

Hi and Merry Christmas to you all.

I have been told that the green light for anti tnf is pending financial approval. The clinical approval has been granted and it was at panel for funding at the beginning of December however I haven't heard anything since!

Is this normal?

It's affecting all parts of my life and the fact that just not knowing is getting me down and causing problems for my relationship?? I just don't know where to turn and have never felt so lonely 9

[Hidden]

Hi Sappy...hope you're ok. I know for my funding etc it did take a while about a month or so from the initial assessment maybe longer, perhapd due to Xmas etc it's taking a little longer? You're halfway there though and I'm sure it will be fine so try not to worry (easier said than done!). Why not give them a ring after New Year that's what I did when I hadn't heard and they chased it up for me. Best wishes and good luck for 2015 xx

[kerpag]

I don't know where you live, but I sm still waiting for the CCG to give approval and this has been since April. My rhreum nurse re-submitted the request before Xmas. I have an appointment with my MP next week to discuss the delay. This is the second time I've had to do this. Fight your corner. It all comes down to money I'm afraid.

[Rosie_rabbit]

Hi sappy and yes I agree it can take some time to sort all the paperwork out. I'm on my second biologic now and the first one took about 3 months from my consultant agreeing for me to start it to my receiving the drug and in the end I was chasing it up almost on a daily basis. Second time around and it went through much more quickly and I had the drug within about 3 weeks but I guess I already had the funding agreed from the first.

There can be little hold ups that can happen, paperwork not being signed, it getting to the wrong department at healthcare at home who usually arrange for its delivery. So definitely recommend you getting on the phone and finding out what stage yours is at. I Know if I hadn't rung up I'd probably still be waiting as no one would have noticed that the paperwork hadnt been processed properly.

Good luck and I hope it works for you. Rx

[sappy]

Hi all, thanks for the replies..

My consultant recommended anti tnf in April but since then as you say it's been one bit of red tape after another. I know we are just nhs numbers to them but I guess I was nieve enough to think that as anti tnf is shown to be more effective if given to AS patients when nothing else is then they would want to commence treatment before further damage occurs.

I will try to keep positive (which I am failing at miserably at the moment) and just hope I do get the funding soon.

Does anyone else feel very alone and like there is little point in carrying on at times?

I dont like to moan and try to pretend that I'm coping just fine with it all but in truth I keep going to very dark places and this scares me as I've never been like this before. How do you all keep positive?

[Patsy-57]

I waited most of last year for a biologic drug. My rheumatologist first mentioned them in February . The wait was mainly due to lack of communication between hospitals, healthcare and to me. When I eventually got it in my home I had a bad cold and then had to wait another month for my cold to go and then a nurse appointment.

Patsy-57

[Hidden]

Hi sappy,

So sorry to hear that you are feeling this way. Please do give the helpline a call. We reopen on Friday 2nd January at 9.30am;

0800 298 7650 Monday - Friday 9.30am - 4.30pm

I have also put a link below for you our publication on emotions and relationships. I hope this helps you:

nras.org.uk/publications/em...

Best wishes

Beverley (NRAS Helpline)