prescription ended

[Tired-fed-up]

Just when things were starting to improve, my prescription for biologics ended! I phoned up Lloyds Homecare ( who supply my meds) and they said that my prescription had an end date and it’s finished. I’ve now missed one dose and am waiting for it to get sorted. I’m so so so very tired of fighting for treatment. It’s only in the past couple of months that things felt sorted and I was starting to adjust to the new normal. Sorry all - this isn’t a question - just a moan

[Hidden]

Same thing happened to me recently with Benepali. First thing that’s had truly meaningful effect in 2.5 years of being diagnosed, and the hospital ballsed up the script. They hadn’t sent the next one on the basis of not having blood results, which was rubbish because I’d had bloods done 3 weeks earlier. They just hadn’t looked on the system. Ended up missing 3 weeks, but thankfully only slightly worse for wear as a result. Fingers crossed the same will be true for you.

[Tired-fed-up in reply to Hidden]

I just don’t get it. I’ve also had 2.5 years of trying things that don’t work and getting awful side effects. It’s just so flipping exhausting

[Hidden in reply to Tired-fed-up]

I know, exhausting is exactly the right word. I spend half my life chasing the nhs.

[MadBunny in reply to Hidden]

That's happened to me before - mess up with bloods and prescription.

[Gnarli]

What can I say without swearing? Sending hugs

[Tired-fed-up in reply to Gnarli]

Thanks! I’ve just phoned again to chase it. I think I needed to have a moan first before I could deal with it!

[MadBunny]

No need to apologise - we all need a moan from time to time🤗 I hope it gets sorted for you asap.

[Jackie1947]

I don't understand as its my Rhuemy dept that issue the prescriptions not the supply chain! Have you thought to ring your hospital? The supplier can't send out meds if they haven't got a prescription

[Tired-fed-up in reply to Jackie1947]

Thanks yes I’ve just phoned the rheumy nurses. I think I needed to moan first before I could deal with it!

[Jackie1947 in reply to Tired-fed-up]

No point in moaning 😆

[Bootoo]

Your prescription always has an end date, mine are issued for 16 weeks and I receive 2 lots of 8 benepali. It is then renewed by my rheumy team, it looks like it has been overlooked as had mine once or twice, a phone call to rheumy should sort it out.

[MJSlide1958 in reply to Bootoo]

How do you manage to store such a good supply of injections? My fridge gets filled with foods therefore have to be very careful. I put the injection boxes in clip containers to try to keep away from light etc. Never been delivered more than 8 injections, I prefer 4 at a time.

[Bootoo in reply to MJSlide1958]

I get 8 delivered use those then get the other 8, not all 16 at once. Sorry I didn't word it very well. I have a big fridge though and there's only me so the benepali make it look fuller 👍😂

[MJSlide1958 in reply to Bootoo]

That's so good you have all that room!

[Amnesiac3637]

Can sympathise. Healthcare at Home failed to contact me re delivery of new meds so left hanging on the phone for hours trying to get through and getting really cheesed off at having to do their job for them. Doesn’t happen often, granted, but when it does it’s so frustrating. They have huge contracts with the NHS but never seem to have anyone who can answer the b……..y phone!!

[Tired-fed-up in reply to Amnesiac3637]

Yes that’s happened to me too. My record time on hold was 2hours 52 minutes, when I had to go out, so I hung up 😫

[Blackberrywine]

So sorry. Awful thing to happen, particularly if working for you.

Healthcare at home did same thing to me...at least the hospital blamed them. Healthcare blamed hospital! I'd given up on the drug anyway. Still waiting to see rheumatology. I'm afraid the system is broken. Sending emails seems to work.

[Tired-fed-up in reply to Blackberrywine]

I hope you find something that works soon xx

[Blackberrywine in reply to Tired-fed-up]

Thanks. I hope your meds are sorted soon.

[Deminem]

Sorry to hear about this.It's very upsetting for you I know and impacts your health.

I haven't experienced this and have been with healthcare at home now called Sciensus for many years.

I'm on Enbrel biologics, and it used to be pre covid that I needed to have presented for my 3 monthly blood tests before they released the drug.

But since covid they have somewhat relaxed that rule although I still do have my tests done they are less tied to my regime before releasing the meds.

Incidentally, I find I can go 2 weeks without my injection before I start feeling crummy so could be your the same or hopefully better.

[Tired-fed-up in reply to Deminem]

Thank you. I always start to feel rubbish a day or two before my injection date so now (nearly 2 weeks late) I just feel like staying in bed until it’s sorted 🙁

[Moomin8]

Morning 🙂How very (change the word 'very' for any of your choice) frustrating! 🤬I have had this happen with Healthcare at Home and Lloyds. Keep on at them and it will get done, eventually. What I do now is call them before it's due and try to keep on top of it. They would always blame each other! What I do is cc them both in all emails...that seemed to help. Hope it works out OK- remember to breathe 🤞

[Tkat10]

I had this problem and now keep a close eye on supplies, which gives enough time to chase hospital for new prescription. One thing to be mindful of is that Lloyds will only take a paper signed copy of the prescription. This of course will be sent second class by the hospital. I have also found Lloyds to be very good at turning these late prescriptions around quickly.

Do not feel you have to wait for it to happen, these drugs are your quality of life so char, nudge and smile down the phone(even if you put it down and have a good scream afterwards.)

[Whezziewhoozie]

It’s happened to me, I didn’t realise they had an end date and was left with a couple of months without a drug. Now I make sure I ask and make a mental note to chase it if I don’t hear about regular delivery’s

[Pitbull2017]

I've been on biological medication for 10 years it's delivered to my house, its on licence and my hospital rheumatology department renews the licence every six months, they use the word licence I'm just repeating it, it's probably down to cost.

[Otto11]

My hospital only issue prescription for so many injections it then has to be reviewed by Rheumy. Your Rheumy nurse should be able to sort it or if not call your consultant secretary & ask her to pass on a message. Hope they sort it quickly x

[Fra22-57]

Yes ring rheumatologist department. They should immediately issue a fresh prescription to them.same happened with me.good luck

[Runrig01]

All biologics are issued with end dates of 3 or 6 months, with the intention that your reviewed and blood results checked before reissuing. It’s partly to prevent wastage of sending you a batch, then they find you don’t meet the criteria to continue. With AS you need to show a 20% or more improvement in your bath scores and pain score has to have decreased more than 2 points. Mine is issued for 24 weeks, with 2 deliveries of 12 weeks at a time. When I get down to 2 injections I start chasing if I’ve not heard. Scienceus recently told me they hadn’t received my latest prescription, when I asked my team they’d sent it 2 weeks previously. Scienceus then admitted they did have it, but hadn’t processed it. I insisted it was prioritised as they had a contract to fill my prescription. It was delivered 48hrs later. It is likely they just need to confirm your bloods are fine then I’m sure they will reissue. Hope you get it sorted soon

[Pythagorus]

It is so frustrating and I sympathise. When I have had a problem re prescription for either Methotrexate or Benepali I phone the consultants secretary and that always sorts things out. Hope you get sorted quickly 😊

[cyberbarn]

There is a technical word for all this hassle that we have to go through: logistical toxicity. I like dropping this into conversation now. And in feed back.

Everyone is using their hospital's Friends and Family Feedback to give feed back aren't they? If every time something like this happens FFT feedback is given, that goes up to the hospital administrators and then on to the ICS (previously CCG). If they get a lot of feedback in a particular service, they are more likely to start asking questions and look at making changes.

[MJSlide1958]

Always check with your Consultant/Rheumy prescription person who sends in the prescription to the meds delivery company, the prescription lasts for about 10 weeks?? Check at your next appointment with your Rheumatologist, that is where the prescription is sent off from.

[Evie3]

Oh that is awful! As if we havent enough to contend with. Hope it gets sorted quickly!

[juliea793]

When you are within two months of running out , make sure you get your bloods done. Then ring up your delivery company and find out if they have a new prescription, If not they will chase it and you can chase it. The Rhuemy team chase it but the prescription is issued from Hospital Pharmacy to Lloyds etc . If you are out of area this can take time. I live in West Sussex but my Consultant in East Sussex. All has to be agreed to be paid for. We just need to be on the ball. I had my bloods done in May but didn't get my new delivery until mid July. I had 4 tablets left..It was worrying but delivery company were very helpful.

[Leics]

I know the feeling and it drives me nuts having to chase. I’ve been waiting to start mtx injections for 3 months currently unmedicated once again. Chased and chased again last week and then got a call yesterday to say the prescription was being sent to the hospital right over the other side of the city so it looks like I’ve got to go there whenever I need to pick them up. I did ask if it could be issued and available to pick up from local hospital but she said well it’s up to you but may cause problems. I don’t need anymore delays so it looks like I’m going to have to travel to get the injections doesn’t make sense and I wouldn’t trust them to send them to me particularly as I need a sharps bin too this time.

[Angjoplin]

I'm forever trying to explain to mu husband that having a chronic illness if like having a full time job in itself. The admin! 😬

[Green230461]

I have an annual meeting with my consultant about funding. Contact your team for advice. Good luck

[Jmfb1911]

I have had so many problems with Lloyds, it was taking away my will to live😂 Absolutely the worst service ever… forever missing doses, will not answer phone calls, no follow up etc. Apparently they have a great contract with the NHS, and nothing can be done.

[Paula-C]

From what I know my hospital does a prescription it's for 2 deliveries. I've been told by Sciensus that they email my hospital before my next delivery is due when they need a new prescription, that's when the fun begins. I'll phone Sciensus to try to arrange a delivery only to be told they haven't contacted me because there's no prescription, I then phone my hospital to be told it's been sent, I'm piggy in the middle trying to sort it. Been told by Sciensus that they have a dedicated team chasing up prescriptions, well from my experiences over the past few years they ain't dedicated enough.

[Tired-fed-up]

Thanks all! It’s nice to hear that I’m not the only one but also shocking to read so many stories of us having to do all the chasing and stressing. I have now spoken to the RA nurse, who said the script had been sent ( of course), but Lloyds hadn’t received it (!), so they have now sent another for urgent fulfilment. I’ve had loads of problems with Lloyds not delivering because their system is rubbish previously and it’s only in the past few months that that was sorted! Anyway hopefully it will be sorted soon and in the meantime I have an emergency stash of oral steroids!

[Piggyinthecraftroom]

Sending you hugs. Don’t blame you for moaning. I believe a lot of us feel the same🤔🙄😘🤗💕.

[Tired-fed-up in reply to Piggyinthecraftroom]

Thank you xx