Hi everyone you may remember my saga with Lloyds to try to arrange swapping to infusions. 17th June Lloyds rang to explain what would happen & the nurse coming to the house then we got cut off. She never rang back. I waited a week & called Lloyds & the lady I spoke to said there was no record of that call & that they couldn’t book me in as they didn’t have an up to date prescription. She said she would contact the hospital & would call me in a few days. Well surprise surprise! That didn’t happen so I waited another week then called my Rheumy advice line last Monday. The nurse called me back yesterday & informed me that the new prescription for infusions was sent to Lloyd’s on 19th June! Apparently they have to do a new prescription for everyone for infusions instead of injections which makes sense although that hadn’t occurred to me. My Rheumy nurse said she would e mail them but if I havnt heard by Monday next week then to call them myself.
I know they must be incredibly busy trying to sort this situation out but i have always had good good communication before & not had such disorganisation from Lloyds before.
Sorry just letting off steam. I will contact them next Monday. Watch this space for the next instalment.
Written by
Otto11
To view profiles and participate in discussions please or .
Sorry to hear the madness continues for you re the temp switch to Abatacept infusions due to the sub cut shortage. My wait to hear anything for over two weeks drove me mad so I can only imagine you are feeling peeved to say the least. My rheumy dept haven’t sent the script for me to have syringes as yet I was told by Lloyds so I’m continuing on pens until Lloyds get this script. I can stay on sub cut though.
I’d ask to speak to a manager when you phone Lloyds. I had to do that before when awaiting a start date for Abatacept pens in 2022. Tell them you’ve been left waiting and no communication for long periods so you have to keep nudging them all the time and it’s getting you down. Tell them how times you’ve chased your hospital people and Lloyds re this. As your rheumy team sent the script to them in June over two weeks ago you know where the fault lies. My guess would be it got lost between Lloyds pharmacists and the people who arrange delivery.
Hope you get someone helpful when you phone Lloyds and you are closer to resolving this next week. Are you out of sub cut now? If so be sure to tell them. Good luck. 🙏🩷
Thanks. I’ve got 2 pens left. I will call them again on Monday as the Rheumy Nurse suggested. I’m getting stressed for 2 reasons as we are away for 4 weeks in September & if they wait till I run out of injections then it will mean I am without any meds for 8 weeks as the infusion would be due just after we go away.
Oh no. Otto, you have to tell them this delay re the infusions commencing is making you feel really unwell and going to potentially spoil your holiday. I hope they can let you continue to have the pens until at least after you return from being away. 🙏
I feel your frustration - there seems to be not only a shortage of the jabs but also a breakdown in the departments dealing with the situation - I was bounced between rheumatology helpline, homecare pharmacy, sciensus and GP and they all seemed clueless with the situation, At least mine has now been sorted despite having to wait until 20 August for the first infusion. Hope you can get sorted soon. I also contacted PALS but am still waiting for feedback from them.
Thanks. Yes it’s obviously not Lloyds fault & trying to sort it out must be a nightmare for them. But communication is rather disorganised being told one thing then another. Can I ask why you have to wait till 20th August. I hope they’re not going to leave you without any meds. 🤞
I was bounced last month for nearly 3 weeks and rheumatology said it’s pharmacy who will let you know and organise this and pharmacy said it’s Lloyds and Lloyds said it’s rheumatology. 🥴😖 That happened when I was commencing Abatscept too, 2 years ago. I hope you hear from PALS soon. I don’t know if they are able to bring forward your first infusion date but I wish they would.
my infusion was supposed to be arranged too.The only sent me 2 epipens last time and I use the last one on Tuesday so I rang day.They were waiting for correct prescription too but rang me back to arrange for some moreinjections to be sent out next week so I am not without.It does seem like if you don’t contact then you are left in limbo thou
Thanks. Yes they promised to call me back in a few days once they had the prescription but never did. Then my Rheumy nurse said it was sent on 19th June so don’t understand why it’s taking so long to sort out. I’m calling them again on Monday & see what happens. I’m glad you’ve got pens till they can arrange your infusions.
Yes, and because it’s only monthly delivery for the most part of patients for sub cut, and I’ve only ever been allowed 4 pens in a monthly delivery it means you are always phoning them as you’ll need to be in touch with them every 3 weeks before you’re out of pens.
I had my first injection on Tuesday this week and still have 3 pens from the 1st supply. The nurse who oversaw my injection said it’s a bit of a nightmare because the nurses have been asked to go in on their day off to cope with all the extra infusions and they’re struggling to cope (Lloyd’s). It must be a logistical nightmare for all the departments and I’m absolutely dreading running out of supplies in 3 weeks. I’ve made it very clear to everyone involved in my care that there is no way I will be able to have infusions with my hypogamma issues and will have to keep having the injections for safety reasons more than anything. I feel for you I know I’m going to have a battle on my hands and will probably end up chasing my tail like you are. I hope you get somewhere soon. Keep us posted.
Thanks. I hope you get somewhere too. I hope they can accommodate you with the pens. I can’t imagine what a nightmare they must be having to sort it all out. Good luck 🤞
I hope you don’t have to battle it, as my rheumy agreed to my email to her re not wanting infusions due to my poor immune and hypogamma and she sent it to hospital pharmacy and to Lloyds. I’m to have syringes once Lloyds receive this request from rheumatology. My delivery next week will still be pens. We should not be having this extra stress.
I too am in the same situation. My rheumatology department sent me a letter saying to inject only once every two weeks instead of once a week to stretch out my current supply and when I'm about to inject my last pen I have to call Lloyds to arrange an infusion. I got a call from Lloyds asking how many pens I have left. I have 3 left which taking one every 2 weeks should last till 7/8. After hearing what you have experienced Otto I can predict that I will probably have similar difficulties. I'm dreading it. These arrangements have been left to the last minute and I'm sure they must have known this was going to happen a long time ago . It's definitely not good enough especially when they know how much people rely on this treatment to stay well. I already feel the downside of fortnightly injections. I hope you get your treatment as soon as possible. Please keep us updated with your experience. I've no idea how many people nationwide use Abatacept but if it runs to hundreds there's probably a problem with not having enough nurses to administer infusions because it's been left too late to implement contingency plans.
Thanks for your reply. Im sorry you’re in this position it dosnt seem right. I spoke to my Rheumy nurse last week & she never mentioned having them every 2 weeks. I was off them in March/ April for 7 weeks due to flu & pneumonia so don’t really want to miss any more weeks. I agree that they have left it till the last minute when as you say they must have know for quite a while. I recall someone in here saying weeks ago that there was a shortage & did anyone know about it. I’m away in September for 4 weeks so ideally would like an infusion prior to that but logistically it’s not going to happen. I just want a plan in place. I will call Lloyds again on Monday.
It's worrying. I think the every two weeks thing was just something my rheumatology department came up with as a short term idea to stretch out supplies. I will let you know if there are any developments on my side. Good luck.
I was told by Lloyds when I started Abatacept almost 2 years ago that there was a pen shortage and only 4 pens a month delivery was allowed. They said pen manufacturing problems, so seems they knew.
Yes that's my experience too. I knew about it and was only delivered 4 at a time. You would think that the manufacturing problems would have been overcome by now but apparently not. There's probably all sorts of manufacturing licences to be overcome which restrict the UK manufacturing the pens ourselves. My rheumatology suggested that Brexit caused the problem. I honestly don't know the cause and no-one is likely to be honest about it. So as usual the patients suffer. I've written to my MP in the past with no response worthwhile. Everyone fudges round the problem but no-one seems to be able to rectify anything.
Are all the pens manufactured in Australia? I am sure Lloyds said to me they were. Yes it is awful the manufacturers haven’t rectified it as Lloyds were telling people there was a problem a couple of years ago. 😳😠
I honestly don't know where they are manufactured. But to me wherever they are manufactured why is there now a problem when they have obviously been manufactured for years. No-one will tell us what the real problem is. So we, the patients, are left floundering and chasing our tails. We rely on health professionals to deal with these things but more and more we are let down. I absolutely hate having to push and push for what should rightfully be available. I had to do it for my husband who passed away last year and I am now sick and tired of having to do it again on my own behalf.. Sometimes I just think they would just like us to go away and give up but it's not in my nature to do that. I think my mentality has been affected by my experience trying to get the treatment my husband needed every step of the way and meeting brick walls every time. I now have no faith in our medical services and am very sceptical about everything I'm told. I'm ranting now I know but it's better than locking it away. I'll shut up now .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
In the UK it is known as Abatacept but in Canada it is known as Orencia. 
Infusion 
Abatacept swap from pens to syringes.
