Funding has been refused

jenzie06 Member Posts: 708
edited 31. Mar 2017, 04:15 in Living with Arthritis archive
I've tried and failed every drug going.
My consultant applied and was successful for a non-NICE approved drug on compassionate grounds.
The drug company have sent a free sample to the hospital.
Now the hospital won't fund it after the free stuff has run out.
I received the letter telling me today. The consultants on leave and isn't back until next week.
No one care.
Consultant hasn't even bothered to write the generic PIP support letter she said she would do. That's the next decision to come through. Anyone want to guess how that is going to go?

I'm in so much pain it's untrue.
I'm feeling sorry for myself. Sorry.


  • frogmorton
    frogmorton Member Posts: 26,869
    edited 30. Nov -1, 00:00
    Oh Jenzie :(

    You must be devastated and so scared!

    I presume the consultant's secretary knows what is going on and is going to ask the consultant to get in touch on return from A/L??

    Of course you feel sorry for yourself totally understandable I think we would all feel the same.

    We are all here to support you even if we don't have the answer ((()))


    Toni xx

    Toni xxx
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    Hi Toni
    Thanks for replying.
    The consultants secretary was away too so I spoke to a nurse in the dept. She was really sorry to hear what had happened and was going to grab the consultant as soon as she's back. I'm due to see her next week anyway (I was meant to be doing the paperwork for the drug) so I will be able to demonstrate my disappointment in person.
    I appreciate that the NHS pot is not bottomless and that the whole system is so totally overstretched, it's just hard to be at the pointy end.
    I wish the people who made the decisions could spend a day in my shoes. Since waiting for the new drug I've only been on painkillers and the occasional course of steroids as they are causing their own problems. The pain levels are phenomenal.

    I've now developed osteophytes on my hands (as well as the erosions getting worse - all in all I've still got the same amount of bone it's just moved around!!) and I've got 3 permanently dislocated toes on one foot due to the rubbish ligaments.
    I'd damaged my knee (it went sideways) getting into the shower a while ago and the consultant wanted me to have an mri, I'm still waiting on an appt. I don't expect things straight away but I do feel forgotten.
    It's also in my coccyx and right side of my pelvis. My back spasms and my neck is flaring. I'm now on migraine medication because the strain on my body is causing migraines.
    With all this, the consultant still seemed surprised that I was in a wheelchair when i came to see her! I can't get to the dept from the car park it's too far and much too painful!

    I feel like I'm always waiting. Waiting to feel better, waiting for the next drug, the next appointment. I'm scared I'll look back and see I spent all my life waiting to get better.
  • barbara12
    barbara12 Member Posts: 21,129
    edited 30. Nov -1, 00:00
    Oh Jen I am so sorry to hear this..and just wish I could could help..but it seems to be the way this country is going..and dont worry about having a rant it will help you to get it all out..there is one thing I would do and that is not give up but keep on at them..shout and be hard I say..I do wish you well for the future x
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
    Thanks Sharon and Barbara.

    I saw the consultant this week and she was extremely apologetic and embarrassed as she was sure it was sorted. It was a pharmacist at the hospital and the CCG who have decided. I will be writing to the CCG to express my disappointment and to explain where it leaves me for the next few months.
    My consultant is having a meeting on Tuesday with the team including this pharmacist and she wants to look her in the eye and make her explain herself in front of the team (the consultant is cross too!).
    I think it is all down to cost. While I appreciate the pot isn't bottomless it is hard to be suffering and know there is a 'free' three month sample sat at the hospital which they won't give me (or give me a decent reason why not - politics and they'd be liable apparently).
    The daft thing is is I could have a couple of doses of this medication, have an allergic reaction and then we're at square one again.
    Meanwhile my joints are becoming more damaged and i can't have the surgery to repair my ligaments until I'm on effective meds otherwise the surgery will fail.

    Oh and with regard to the PIP letter, it was the secretary who didn't listen to the tape properly. Consultant dictated it but secretary deleted it from the tape not realising it was there. I said I felt a bit forgotten (consultant strongly denied it) and quite fed up. Another letter is being written up (with a red exclamation mark next to it) and hope that it will do some good with the DWP although I will not hold my breath.

    Anyone want to play eye spy while I wait?