Abatacept from Lloyds Clinical Homecare : only a 4 weekly delivery allowed.

[Neonkittie17]

Hi, Has anyone else been told they can only have a delivery for 4 weeks/four pens. As they don’t phone me anymore or text me, I have chase up every 2-3 weeks and I think we pay for the calls. It’s not a script thing and I’m not new to the med as I’ve been on it since September 22. One of their admins said they have a shortage since December, but I have been told different stories! I’d been overlooked and they forgot to rebuild my script twice, for example!

If it has to be this way then so be it but a 2 monthly delivery is easier and frees up constantly chasing things and holding in a queue. Anyone else been told this re an Abatacept pen shortage? Thanks. 💗

[helixhelix]

when in Uk I never got more than a month of pens at a time.

[Neonkittie17 in reply to helixhelix]

Thank you HH. That probably means I’m forever going to be phoning them. 😑

[medway-lady]

Same with Sciensus and I was told shortage too. It’s been like that the past year. A nuisance when they don’t turn as well. They advised me that it was on its way but were unable to fill prescription as non in stock. Gggrrrrr….

[Neonkittie17 in reply to medway-lady]

Arrgghh. Well if it has to be a four week delivery then fair enough. I was told last week they could do another delivery just after Easter but not 8 pens together. I was sent the usual text last week text the night before to say it would be there 8-6 and then nothing more narrowing it down to a 2 hour window. Same last time. I should have tried to phone to ask exactly when, but sat in the dining room watching for them from 7.45am to 1.50pm. Your recent issues sound crazier than mine Wonder if they are the only ones delivering Abatacept.

[aliplayspiano in reply to Neonkittie17]

That’s interesting. I have my tocilizumab delivered by Lloyds clinical homecare. Sometimes they ring to arrange a date, sometimes they text a date and I can say yes or no. The night before they always send me a two hour window and it always comes in that time. My only slight frustration is that I used to sometimes have to take a day off work to wait for it, but now my husband is retired he is available. I used to have monthly deliveries ie one box of four syringes but now, because I only inject once a fortnight due to low neutrophils I just get a box every two months.

[Neonkittie17 in reply to aliplayspiano]

I get a . .. delivery tomorrow .. text the night before then they used to send a two hour window text the next morning but haven’t last twice but said they have! I’m told to phone them on the morning and ask them if I don’t hear, but it’s yet another call and more waiting. Don’t believe they are sending the 2 hour window texts to me as I’m not having text issues. We’ll see what happens next week. To be expected to hang around the back door for 6-7 hours as I did last week and before or looking out the window for the van isn’t really good. (They used to text their location too as they got nearer but none of that now either!) Glad you’ve got a good routine to deal with your deliveries.

[aliplayspiano in reply to Neonkittie17]

Oh that doesn’t sound very good if you have to ring them to get your two hour slot! Or if you have to sit and wait for hours by the back door!

I’ve never had them text their location but I’ll settle for the current routine as it’s working!

[Neonkittie17 in reply to aliplayspiano]

Yes, they texted a ”next stop” link to a google map at first for 3-4 months then no texts at all on the day.

[AgedCrone]

See Below from the NHS Website….. it eliminates patients being given a 12 week supply, then many finding after a couple of weeks the med doesn’t suit them. Very irritating but I guess savings need to be made.

.”According to the Department of Health “A 28 day prescribing interval is recognised by the NHS as making the best possible balance between patient convenience, good medical practice and minimal drug wastage”

[Neonkittie17 in reply to AgedCrone]

Yes of course that’s common sense, and the way it’s always been for me with a new med ... until you’ve shown you’re not allergic etc., to if/if you can’t tolerate it ... you have a monthly supply, but as I mentioned above in my first post/question I’ve actually been on the med over 7 months now! Usually I’ve gone to 2 or 3 monthly by 7 months. That was the first thing I discussed with the manager I spoke to. 🤷‍♀️ My script is fine too.

[AgedCrone in reply to Neonkittie17]

Wel…..it seems thems the rules for now……but nothing is forever…it will probably change if enough people complain!

[Neonkittie17 in reply to AgedCrone]

I’m seven months into my med so my issue most definitely isn’t the ... new patient so you can only have a few ... but yes, thanks to everyone replying and who has had the same too re Abatacept. Seems they can only let us have four weeks at a time. Not ideal as it means people phoning everyone couple of weeks. 🤷‍♀️ So be it!

[Neonkittie17 in reply to AgedCrone]

true!!

[Lolabridge]

I'm only getting 4 pens at a time of my Tocilizumab from Healthnet Homecare. I think it's the NHS trying to save money but it's less convenient for us. I had one of my four pens fail last week and had to phone to get my next delivery a week earlier. Thank goodness my supplier is not Sciencus or I don't think they would have managed it!

[AgedCrone in reply to Lolabridge]

But we have all got to admit the NHS has got to get a grip on budgets, & prioritise where the money is spent. If it carries on as is….there will be a price to pay. ….& we the patients will be the ones paying…..if only getting one month’s supply per scrip is helping…..all we can do is hope things improve.

[Lolabridge in reply to AgedCrone]

Of course AgedCrone, but it's stressful worrying whether your delivery will arrive in time for your next dose! Missing a dose of a weekly injection could probably cause a major flare.

[Neonkittie17 in reply to Lolabridge]

Yikes! Sciensus don’t have an emergency next day delivery but Lloyd’s told me they do. Haven’t had to ask to use it yet. Lloyd’s do deliver on time but it’s often a hard thing to get them to do it all!

[sylvi]

They never do anything that will help the patient do they darling. xxxx

[Neonkittie17 in reply to sylvi]

Just seem to add a lot of stress! At least they are delivering and not like Medway’s issues ! xxx

[ruth_p]

I get three months of tocilizumab from them but mtx is monthly on prescription from the GP. I guess I’ll find out when they deliver on the 17th. I found email got a quick response from them.

[Neonkittie17 in reply to ruth_p]

Lloyd’s and Sciensus have never responded to my emails!

[Jmfb1911]

yes, I only get 4 pens at a time. They were horrible to begin with, but are much better now.😄

[Neonkittie17 in reply to Jmfb1911]

Glad it’s improved for you. Originally took me three weeks to get through to them and a long delay of getting started. Id have had to get my rheumy on board had I been in agony waiting for the med but fortunately I wasn’t.

[Whezziewhoozie]

there seems to be something going on with Lloyds as well as sciensus … I am with Lloyds and having to chase them too !

[Neonkittie17 in reply to Whezziewhoozie]

Definitely for me re Lloyd’s! Sciensus behaving .. for now. 🙏🏻

[Otto11]

Hi. I’ve been on Abatacept since 2020. At first Lloyds delivered 2 boxes (8 pens) & then in early 2022 they said there was a shortage & it would be only 1 box. I can’t remember exactly the date.I’ve never had to chase them they always call on time. I find them very efficient. Strange how it’s not the same for everyone. ( I’ve been off mine since January for surgery just about to restart. I bet now I’ve said that that I have a delivery problem ) 😆

[Neonkittie17 in reply to Otto11]

It has gone from phoning me every fortnight which was a bit too much, down to nothing.

[Otto11]

Isn’t it odd 🤷🏻‍♀️ Also a pain. I’m due a delivery as been off mine for 2 months so will see if they contact me. My nurse did the prescription last week. X

[Neonkittie17 in reply to Otto11]

I hope they do phone you as I’m not sure it’s a free number anymore.

[Otto11 in reply to Neonkittie17]

Oh! Great. Thanks 🤞 x

[MerielPB]

I haven't been told anything but I am with Sciensius and they only deliver 4 at a time now. I was told some time ago there was a shortage of pens, so had to use syringes for a short time but haven't heard anything for some time.

[Neonkittie17 in reply to MerielPB]

With Abatacept? I didn’t think they did syringes anymore.

[MerielPB in reply to Neonkittie17]

It was some time ago, just after we came out of the EU. Think it was due to BREXIT/lack of HGV drivers.

[Neonkittie17 in reply to MerielPB]

Not what I was told from Lloyd’s (been told so many things!) but thanks for your reply. Makes sense. x

[Summerrain14]

I have just had a call from Lloyds tonight to arrange delivery of my Abatacept. They have advised me that they are sending out eight pens for me on Monday but just realised that is bank holiday so will ring them and confirm that this is still going ahead but suspect not understandably. x

[Neonkittie17 in reply to Summerrain14]

I had a delivery booked for Easter Monday not realising 10th was the Monday and then asked them not to deliver on the Monday! I have rearranged it. I would check to be sure but think they’ll deliver to you if they were going to for me! Odd how they told me back in August/September only 4 pens allowed as I was a new patient then I’m told only 4 allowed from December onwards, as they’ve told others in their replies to me on here!

Hope all goes well for you when you inject. I’ve found it the least painful of 3 other click pens. So easy to do. In fact I wasn’t sure it had worked as I didn’t feel the needle. There is sometimes the feel of a tiny scratch after for a few seconds. You can see a blue line going down through the pen window as proof anyhow. Good luck.

[Runrig01]

I’m sure Lloyds would rather deliver 2 monthly if they could, as it puts extra demands on their service, and will have cost implications for them. There are several meds with supply issues, many are ones produced in Europe, where Brexit is playing it’s part in how meds are distributed to the U.K. I’m fortunate that my Benepali has gone from 2 to 3 monthly deliveries, which is fine by me as I havd 2 fridge freezers. However I imagine some may be unhappy if they have a small fridge and have to find more space for a 3rd box. I’m quite sure that once stock is replenished they will revert to 2 monthly again.

[Neonkittie17 in reply to Runrig01]

Aware of Brexit issues of course, but my reason for asking the Abatacept/Lloyd’s patients here what experiences they had re shortage of supply was

1) Lloyd’s have got themselves so muddled lately since the new year especially with my delivery and have been telling me several different stories.

2) I’m not a new patient (been with them over 7 months) but they told me at first the only 4 pens was because I was new. (I would always expect to stay low stock until after 12 weeks. Always have done before but it’s now over 28 weeks.)

3) I’m then told my “script is needing rebuilding“ every time I try to arrange a delivery so the script breaks down online apparently and gets voided/ignored! Then told finally from a manager .. Well whatever it is as, we’ve no stock. (To just say so from the start makes it plain to understand.) My rheumy said definitely not a script issue from her side.

4) I had a reply from someone on here who is a brand new patient and is expecting 8 pens. So Lloyd’s staff are a bit confused to say the least.!! I was just trying to clarify what others are experiencing.

Oh, I forgot to mention the multiple texts I get every few hours saying a nurse will call you when I haven’t requested one? Over 12 received now from Lloyd’s. Told them I didn’t need a nurse call as they started those texts to me over a week ago! Glitches all over. As I said, if Lloyd’s Abatacept patients all have to wait and be delivered to every month then nothing else can be done. It’s the multiple differing stories I’ve had that do not add up. We shall see what happens, but I do hope they don’t become Healthcare at Home.

Personally, I can’t “revert” to 2 monthly deliveries as I’ve never had a 2 monthly delivery!! I’m sure and hope others will get their 8 weekly routine back. I’ll just add them to my ever growing list of medical calls/people to chase up as Lloyd’s don’t contact me since October to even to arrange a delivery.

[Runrig01 in reply to Neonkittie17]

sounds like a nightmare. There’s not one good delivery company out there. Ridiculous when you think how much the nhs pays for the service. Hope it gets resolved soon 🤗

[Neonkittie17 in reply to Runrig01]

Thank you. I know, it’s bonkers! If I’d just been told there’s a shortage, sorry I’d have thought well, can’t be helped. The nurse who came first injection was superb so cannot fault that side of things. Glad your deliveries are running smoothly.

[RachelD1972]

Hi, I’m also on Abatacept delivered by Lloyds. During the pandemic they delivered 3 months worth of pens at a time. Like you it’s now dropped to 4 per month. Might be worth querying with your rheumy sec as to why prescriptions are not being filled on time x

[Neonkittie17 in reply to RachelD1972]

No, that’s definitely not the problem re prescriptions. Something in the way Lloyd’s do them on the screen was wrong I was told on one of the explanations! My rheumy had done all of the scripts well in advance so was not that. Glad you are back on track. Thank you for replying. x

[Neonkittie17]

Yes! After a recent phone call from a helpful Lloyd’s manager re the absent/erratic texts re my 2 hour window for delivery, it worked this time. (Delivery hasn't been the problem .. just knowing when!) Fingers crossed it stays working well🤞🏻

[SwissChard]

I have stopped using Lloyds because of the and their intrusive questioning. I get mine direct from my hospital now and I get 3 months at a time. There is no shortage.

[Neonkittie17 in reply to SwissChard]

Just back on after a long break so just seen your post. I was ahocked at their interrogations when you phone to place your order and their untruths about their stock of Abatacept as I know patients who are given 2 months’ supply no problem. 🤷‍♀️