Hi All, I'm wondering about other's experiences regarding length if time to be initiated on a biologic after being given the green light regarding DAS scores please, mine seems to be taking a long time and I'd like to see if this is jormal please.
I saw my consultant on Feb 11 and got the green light for biologic -hurrah! It's been a long , frustrating, degrading and tough journey. 6weeks later had an appointment with the nurse, where I assumed I'd be getting my first dose, training etc, only to be told that that was just to tell me I had funding (a rather ineffiecient use of all parties resources, surely a phone call would do?) . I was informed the healthcare at home nurse would contact me withing 3 weeks and would take it from there. So, three weeks later, no phone call and I've contacted the RA clinic as advised to if they hadn't called wothin this time period. I called Monday and Friday, no response. It's extremely frustrating and I can't help but think they are deliberately delaying to save money.
So it's now almost 3 months since I qualified for biologic therapy, and still no idea when this will happen. Is this normal? Please let me know your experiences so I can discuss this with the hospital, if I can ever get hold of them that is.
I'm not impressed with them as you can probably tell. I've had a hideous journey with this hospital and frankly bern treated appallingly. Once I do get my meds I will complain, I just daren't rock the boat until then as they hold all the power.
Kr All, and apologies for the rant at the end,
Yours frustratedly, V
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VivRaine
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I think each hospital has their own protocol but it does seem a very slow process. I would suggest you keep trying your team to get an answer. It also depends on which biologic they offer you as the infusion clinic can sometimes be very full. If a self inject paperwork can sometimes go adrift and communication between hosp and delivery company is not always very good. For me when I eventually got the medicine in the fridge and although having injected before I could not start until the nurse had visited. That appointment was for nearly three weeks time but I managed to get my rheumy team to intervene and I get a date for that week. Farm
Sorry to read this story. It doesn't sound right to me.
My personal experience was that when the Consultant said I qualified it was about four weeks when Healthcare at Home delivered the injections and the Biologics nurse had phoned and arranged to come along to chat and show me how to inject. So perhaps five weeks in all.
I would like to suggest that you phone the rheumy nurse or email if you can and ask for a reason for the delay and ask for confirmation you have not been forgotten by them or Healthcare at Home.
It is ok to politely ask. It is your body, your diagnosis and the consultant has said yes and so has the clinical commissioning group so there should be no delay in sorting the prescription paperwork.
Don't be afraid to ask. I know some of these people can come over as having too much power over us but at the end of the day they are employed by the NHS to do a job and to do it well for the patient who is in pain.
I have to say it took my hospital near on 6months for Embrel to be processed for me. In this time my right hand got damaged from the disease and is now damaged to extent that I have lost some dexterity (I am a pianist).. I'm pretty sure this occurred because they took SO LONG for it all to go through. Keep pestering. And good luck TTx
I started my 1st Biologic mid February this year after being approved by my consultant in November last year.
The delay was waiting on various blood test results, then an appointment to see the Biologic team & then the wait for delivery of injections and then FINALLY the arrival of the BUPA nurse to do the training.
It felt like it took forever.
It now looks likely I will need to change to a new Biologic so I am hoping that the process won't be so long this time around.
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