Difficulty getting cenobamate?

[Climbingthewalls]

Hi,

I’m just wondering if anyone else is experiencing shortages or difficulties getting repeats of cenobamate? It’s been with the pharmacy for nearly 2 weeks and they keep saying it’s in the next days delivery but then it’s not come in. I run out now tonight. I know it’s a relatively uncommon drug hence why I always leave enough time to order in but this is the worst it has been. I’ve phoned round all other pharmacies in the area and they’ve either never heard of it or don’t have it.

Not really sure what to do now 🥴

[RR25]

That is a massive failure from your pharmacy. You have gave them 2 weeks and they clearly haven't prioritised a critical medication. Have they not seen recent coroners reports where people have died due to lack of drugs? You need to put in a complaint. You could attend your nearest urgent care department and they can suss out if the hospital pharmacy stock it.

Good luck. 🙏🤞

[Climbingthewalls in reply to RR25]

I’m being all very British about it at the moment, they’re saying there are delivery delays and every time they’ve ordered it it’s just not come. So I’m not sure where the fault comes down to. The drug is on one of those ‘shared care agreements’ with the GP, I don’t know if that makes it harder to source? I know when I’ve been in hospital before they’ve had to get a courier for the medication from Queen Square. It’s madness like you say for a critical medication. He came up with a solution of splitting a higher dose with a pill cutter to make the right dose, so in his role as a pharmacist he has provided a solution, making me think it’s supply? Is anyone else on it having similar issues. I take 250 mg split as a 150mg and a 100mg dose.

[EpilepsyAction1 Partner Epilepsy Action]

Hi, we're sorry you're having this problem.

We've not been told of any shortages or manufacturing problem with cenobamate. If you call us at the Helpline on 0808 800 5050, contact us via Live chat on the website or email us at [e-mail] we can look into this further for you (epilepsy.org.uk/support-for...

I'm also linking you to NHS 111's emergency prescriptions service in case there's anything you can look into there: 111.nhs.uk/emergency-prescr...

Regards

Mags

Helpline Team.

[rankin1st]

Hi so sorry you've been having issues. Always takes two weeks it has to be ordered by the hospital (Via neurology specialist nurse) not local pharmacy. They've always got it on time as they know the importance of not running out. Maybe talk to specialist nurse if you have one? I do hope you get it sorted soon and moving forward

[GoodnessGrace]

I'm so sorry you're facing this situation - it's extremely stressful which is the last thing you need. I'm assuming you were getting it from Queens Square and are now getting your local pharmacy to order it for you through your GP. I've found with specialist epilepsy medication you need to order it 4 weeks in advance as there are sometimes difficulties just understanding how the ordering process goes, both with the GP's actioning your neurologist's request and the pharmacy then ordering a novel drug. Hopefully once they've got it once it will be slightly smoother sailing although I had exactly the same problem as you are with our 3rd prescription for it.

I've also found that Lloyds pharmacies are really good at ordering tricky meds. When I was trying to get a prescription for Briveracitam, my local pharmacy said it wasn't available so I took the script to a Lloyds and they could order it for me.

Try to swallow your Britishness and gently visit your pharmacy every 2 days to follow up on the request next time you put the prescription in. They know how important seizure meds are, but are often so busy they won't notice ordering issues. My daughter has missed one dose in error and it was ok so hopefully you won't miss more than one. Praying it arrives today XXXXXX

[Antelopes]

Hi. I've not had any supply problems however I am aware that it is an expensive medication. This can't help matters either as there may be a reluctance to get it in. Speaking generally with corporate pharmacies they don't have the choice to shop around.