Faulty Benepali Injections

[Shamrockgirl]

I have two questions today, to ask about others experience of this. I appear to have had 3-4 “faulty” Benepali injections, in that I set out to do my weekly injection (been doing for almost a year) and it won’t go in/don’t hear the click. I contacted the Healthcare at Home (for those that don’t know, private company that delivers your injections) pharmacy department. This developed into an annoying scenario (to me, no secret that I hate the idea of the private company) they asked very involved questions, did I have x paperwork/batch no’s, but as I have poor memory & info processing issues, so that was first hurdle. She then advised me to keep 2 injections, in case manufacturer wanted it back & put other 1/2 in sharps box. Then a week or two later my Rheumatology nurse rang me, to say the private company had told them, I felt they had told tales on me😰 I was a bit sharp with her over this. Next thing, the company kept trying to phone me to arrange their nurse visit, this is annoying as usually out or doing something & find this hard to cope with. So finally after a few weeks, now have the private nurse coming tomorrow, to “check I’m doing the injection ok”, but I’ve been doing it the other weeks? Then I have to remember to let tge NHS nurse know they’ve been. I think this whole scenario is not helpful for us, the patients, in my view.

That brings me on to, how do people dealing with us all this who still work, especially office hours, cope with this? There are the monthly methotrexate blood tests, Rheumatology & other medical appointments etc. Admittedly I have other conditions too, but drives me nuts that almost all of these appointments, visits, deliveries are in the limited Monday-Friday office hours. When I was still working, 8.30-4.30 pm I got moaned at for having some GP & hospital visits, I dont drive & worked in different town to where my home & surgery was. I was asked if “I could get an evening appointment”😱😱 Best bit was the employer was DWP, yet they talked of their 2 ticks disabled scheme, supporting disabled employees, all nonsense.

[Kerensa21]

If you don’t already, make sure you request copies of all letters to GPs (your right under GDPR rules anyway & I hate paternalistic attitudes towards patients). I had similar scenario to yours when I did this (after repeated requests & finally in writing): Healthcare at home had informed rheumatology that I had refused nurse visit and biosimilar drug replacement. Here’s the rub, i’m not with that particular company for deliveries, not and never have been on the drug they mentioned nor have I ever refused any treatment! Wouldn’t have known if I hadn’t asked for letter copies, so yes, they can contact your hospital. Shows how important it is that patients are kept informed as errors can & do occur. Sorry no help on benepali though have had a couple with v delayed clicks but your post struck a chord. And as for DWP 😬x

[Pandorabox]

I had a faulty batch of etanercept from Healthcare once. I called them up and they told me to send back the faulty injections and they gave me new replacements. It was quite straightforward in my case. They never sent a nurse round, so for me it was minimal disruption.

[Jay-bird]

Sounds about right. I had the same problem with Abatacept which - thankfully - I no longer take. They seemed to think that the product or the delivery system could not be at fault and suggested I go into clinic for instruction on how to inject!!! I'm afraid I gave up at that point.