Biologic funding; little did I know!

Morning peeps-hope the night brought you some rest...

I decided to skip dinner (which I made) and after a bath, take to my bed; I'd had enough of yesterday 😒

The day started on negative: I'd rung EDF, being a customer, as I'd been advised that smart meters were being installed in my area and that as I'd registered my interest a year ago I'd be top of the list; the guy I'd spoken to the day before was confused as to why I'd not been contacted. 'Oh no, sorry, there are no more slots- you should have registered online! 😖I was not a happy bunny- but what could the representative do? Nothing, as it turns out!!!! Btw- that was a shortened and edited precis of my phone call😊

Round 2: back on the phone to the hospital as they haven't sent my prescription for Cimzia through yet and today is my last (of the first 3 months.) Healthcare at Home have been chasing them (can only do this once a week) first the past 3-4 weeks! I've left messages with the clinical nurses and my rheumatologist's secretary to no avail; why am I having to do this? Well, eventually I had a voicemail- which I picked up at the end of another long, tiring day at work- saying that my funding had expired!!! 😢 I'm embarrassed to have to say: I was a mess! What? Why??? I actually managed to get hold of the rheumatologist's secretary (a rare occurance) who informed me that as I'd cancelled my last appointment (I hadn't: my rheumatologist was ill so they did) my 3 months initial funding was up!!! I certainly don't remember that being part of the deal! Needless to say, I was not a happy bunny (to put it mildly) once again in a day! She was quite rude and dismissive. To cut a long story short (well...shortish) I sat a while wondering what on earth to do and eventually got through to admissions, who....had a cancellation for today- yay! After informing her that she was a life-saver (well- she was) I thanked her perfuslly and breathed a sigh of relief. When I got home (to make dinner; wasn't feeling it) I got a call from the clinical nurse (maybe the secretary wasn't too bad I'm now thinking) to say she'd noticed that I'd got an appointment for today and 'hopefully' all will be ok: to apply for funding for "the next 3 months!'

All I'm saying is: watch out for when/if you get funding- I thought it was for as long as I needed it; not for short chunks of time. Maybe it was my fault that I hadn't listened properly when I had my appointment in the first place, but every appointment is so stressful when your health depends on every one!

Anyway- I'm off to finish getting ready for another long day....with a happy ending- fingers crossed xx

18 Replies

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  • What a night mare ! Don't you think the battles that you you to have just for every day living are sometimes as bad as the illness. I do hope your appointment goes well and you get the funding. I am sending you strength and best wishes.

    I too am having battles but will not go on. On a plus side I had a new boiler fitted 2 weeks ago. Have heat and hot water first time since November.

    Do hope it goes well today for you, you should not have to battle for your treatment. Xx

  • Moomie- you are so right! Wishing you well with your battles. And yay to the boiler🤗x

  • Never been so pleased to wash the dishes and not have to boil kettles :) xx

  • Oh Moomin, what a hassle! I'm so sorry to hear this.

    Wishing you all the best and Hope you get your medication properly this time.

    Best wishes

    Ally x

  • Ally,thanks for your wishes x

  • Funding only for three months at a time??? So,what happens when the rheumatologist only sees you once a year? Ridiculous! Clemmie

  • My sentiments exactly Clemmie! Anyhoo...went to the hospital today- sulfasalazine increased from 2 twice a day to 3 twice a day....steroid jab in my backside....have to increase etoricoxib to 90mg a day from 60mg a day (thought that was not recommended anymore via NICE?) and had to apply for funding again for Cimzia- Three hours at the hospital- that's after looking for a car park place for over 30mins!!! Talk about a stressful day- and I was at work beforehand! Boyoboyoboy 🙁Then....home for my last injection of Cimzia...yay- I sure know how to have fun 😆

  • Are you saying you personally have to apply for funding when the consultant prescribes it? Or have I got the wrong end of the stick?

    I had nothing to do with my funding, I was just given an appointment for the infusions by the rheumy nurse.

    Does anybody else have to apply personally for funding?

  • The hospital have to apply for the funding on my behalf.

  • That is what I thought. I understood the Consultant Rheumy submits an application with your Das scores & proof you have now failed on three Dmards & it's then approved......or I suppose sometimes not.

    I get infusions every 6 months & I get the date for the next session a couple of weeks after an infusion....Go Figure I guess!

  • Round 2 may explain why my consultant announced he'd booked 3 more monthly 'drop in' sessions for blood tests (i.e. provided cover via computer records so I don't have to produce any paperwork!) The statement was more for the benefit of the trainee present than for me, but it suggests all our tests and treatments that we take for granted are reviewed quarterly and costed accordingly.

  • What a load of rubbish that is, totally irresponsible to leave u with no medication it's really appalling how we are treated at times- I'd be writing a stinking letter to the hospital director as it's really not on.

  • Thought about complaining - I did go straight to PALS inside the hospital and wrote a complaint about the parking!

  • I wonder if different trusts have different protocols....

    I've been on biologics for about 10 years and have appointments (and blood tests) 6 monthly, never had any issues or even mentions of funding since I started.

    Although it's no bad thing that patients are aware of the cost of some aspects of treatment making it that stressful really isn't going to help anyone.

    Glad it's sorted anyway.

  • Glad you are sorted Moomin though what a dreadful time you have had, I'm so sorry things have been made so difficult for you and hope the funding for Cimzia is just a formality.

    I'm out of Benepali, despite me phoning every week for the last month. Health Care at Home say they are chasing up the hospital.

    Will phone the Rheumy nurses tomorrow but I've got three working days before I need my jab and it is not of my making!

    Health Care at Home said 'are you up to date on your blood tests and hospital appointments?'

    Big sigh from my end!

    Everything is such an uphill battle.......... Very depressed.

    Mx

  • HAH told me that they can only ring on my behalf once a week. I rang the clinical nurse and my rheumatologist secretary- in fact anyone who'd listen - best of luck with getting yours on time.

  • My rheumatologist has to apply for funding every time I need Rituximab because I don't (can't) take MTX or Leflunomide alongside it. It means it can take months between me saying I need another infusion and actually getting the infusion, sometimes I'm so ill while I'm waiting it feels like I'm dying.

  • Seems wrong to press "like" here Dogrose- because that's not good at all! How do you manage? This is just a minefield isn't it? Life for us on a day-to-day basis is tough and unpredictable enough isn't it?

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