How has anybody actually received their biologics?

Reposting this as Versus Arthritis have censored my previous post. Feeling incredibly depressed that they are unwilling to help in this horrible situation I'm in but I'm hoping somebody here might.



I was prescribed Amgevita in February and am still awaiting my first delivery. Unfortunately it's in the hands of a company the NHS outsources to, which I'm not allowed to name on this forum but I believe it's the only one they use. Anyway, they are beyond a joke. Wait times to get through to someone on the phone are as long as at my local GP, and when you finally do get through they lie to you or fob you off and say someone will call you back, which they then don't.


I'm so depressed by the thought of having to do this every month in order to get my medication. Why can't we just pick it up from the pharmacy like almost everyone else does?


Has anyone actually successfully had a delivery from these jokers? I just phoned to find out why I hadn't been given a time slot for tomorrow's delivery and was told it was cancelled. Nobody had bothered to inform me. Man on the phone could not possibly have cared any less. Reading the trustpilot reviews I can't believe they have ever actually carried out a single successful delivery.


I'm so scared that my medication is in the hands of this horrible, useless company. Is there any other way or is this really what we have to go through? I thought the constant NHS blunders I've put up with over the last year were bad, but this is on a whole new level. I'm pretty sure the rage and despair this has caused have led to my current flare-up, which is almost stopping me from working.


Please give me some hope that I will ever actually get my hands on the medication I've been fighting for over a year to get.

Comments

  • stickywicket
    stickywicket Member Posts: 27,764

    I wish I could help but all I can say is I did see your original post and it rang several bells. I googled the name of the company and it seems it's a new name for an old problem company.

    This is nothing to do with covid. These problems date back about 10 years. See here https://community.versusarthritis.org/discussion/42106/healthcare-not-at-home

    They did improve briefly some years back but clearly it didn't last. I can only suggest you contact your local PALS.

    I do understand why you can't just pick them up from the local pharmacy, however. These are powerful, potentially toxic and hugely expensive meds with a limited life. That much makes sense. the rest doesn't.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Thanks for the suggestion, I was thinking of contacting PALs though not sure if will make any difference. Just so infuriating that this dreadful company is our only option, I don't understand why they are entrusted by the NHS with such an important task.

  • KazandNoo
    KazandNoo Member Posts: 130

    Hi Curious Squirrel

    Sorry to hear of your problems getting your medication. You must be at your wits end with it all. I'm on Amgevita and it's delivered every 8 weeks by I believe the same company you mentioned Touch wood I've not had any problems in the year I've been getting deliveries from them. They contact me to arrange a delivery, by email and text message then I go online to their portal to either accept the date offered or change it to one of my choice. The only time I had to ring them I was told it would be a long wait for them to answer my call and was offered a ring back service to save me holding for ages. I took this option and they called me back about half an hour later. I think I emailed them once too,and they did reply. I think as sticky wicket says they have to be delivered as they're expensive etc and also have to be kept refrigerated at all times so are delivered in a refrigerated van.

    Keep trying and hope you get sorted soon.

    Best wishes.

  • Hello, thanks for your reply. I have been at my wit's end, I've not been this frustrated and upset for a long time, it's sent me into a horrible flare up and depression. Especially after looking at their TrustPilot page and seeing how many people have been screwed over and left without medication for weeks.

    However, I have heard from a few people who have had much better experiences than me so far, so I have a little more hope now! I have also heard that they do deliver to pharmacies for some people, though this was never mentioned to me. I will ask next time. I was also told I would have to have mine delivered every month, every two months would definitely be preferable!

  • I wonder if location has something to do with it, and some areas are served much better than others. I'm in London and I must admit I've never had any real problems with this company. Nothing more than the very occasional error - like once I rescheduled a delivery and they still showed up at the original time and I was out. And one time the delivery man came to my door with his motorcycle helmet on and the visor down. Not good to open the door to that when you're a woman living alone. The only issue I seem to have is my hospital not giving them the prescription.

    I know this isn't particularly helpful to your situation, but I hope it at least gives you some hope that things could change. As for Trustpilot, people are more likely to write reviews when they're let down. When things run as they should it doesn't occur to most people to leave good feedback. But obviously there are enough people who have had problems for there to be a lot of complaints - I hear of quite a few on another forum.

    You must, as frustrating as it is, keep fighting because they will forget people who don't make a noise. Same everywhere. I've been quietly waiting for two medical procedures for 7 months. When I got fed up I chased it up to find one list incorrectly had me down as already seen, and the other referral hadn't been made at all. So unfortunately it doesn't pay to be patient! They say the squeaky wheel gets the oil.

  • Thanks for your reply. I did eventually get my medication, by some miracle! Then the nurse turned up hours late but I was so relived to actually have the stuff by then that it hardly seemed worth complaining about. Shows what low expectations I have of our health services, both "national" and private!

    So sorry to hear you have been waiting for so long and have been messed around. I agree we musn't be patient, but I find it so infuriating and utterly exhausting chasing these things up, I am having several meltdowns a month and regularly think I will just have to give up because communication with everyone seems so impossible. The incompetence of our health service is by far the most frustrating thing about my experience with this illness. I couldn't even get through to anyone to CANCEL an appointment I was given last week (when I dared to go on holiday for three days) so I now have to go back to the beginning and get another referral. I'm not even going to bother with that one, I don't have long enough breaks at work to sit through the queues to get hold of my GP.

  • I hear you CuriousSquirrel - it's a bad state of affairs. I really hope the medication works for you.