Delay in Enbrel delivery

Has anyone had the same problem I have had over the last two weeks? I had had no phone call from Healthcare at Home about my next delivery and was down to my last syringe, on ringing I was told they were waiting for my perscription from then hospital, I have spent the last two weeks chasing info on it to no avail. It was unfortunate Easter came in the middle of it all, the Rheumatologhy nurse was on leave! And answer phones were on everywhere else I tried. Surprise surprise, I get a phone call from the Pharmacy at the Hospital today, the one number I didn't try, to say my script had been sent on March 31st. I am being very sceptical and wonder if it is anything to do with new budgets starting on April 1st! We know hospitals are struggling with finances but it is very worrying if our drug supply's are going to suffer. I spoke to a Phamacist at Healthcare at Home and she said I should not suffer  having missed two weeks but I do feel I have stiffened up. To add insult a phone call today says they won't be delivering until next Friday, eight days after the script being sent. Has anyone else missed having their Enbrel, and what results did they have?

14 Replies

  • After having a nasty injection site reaction I had a gap of 2 months before taking my next Enbrel injection and all was fine, except that I had another ISR and had to swop to Humira. But no joint problems or pain even with such a long gap. It does puzzle me that we are all given the same dose regardless of our weight or other circumstances.

  • Thanks Matilda for such a quick reply, you make me feel better, but I had never thought about the dose and size,you are quite right. Don't know anything about Humira, is it just as good as Enbrel?

  • Difficult to say. My joints are still much better than they were  last summer before I had some prednisolone and started the enbrel. But I'm beginning to wonder if I'm having some side effects with the difficult to tell what is responsible for what. 

    And the rheumatologist now thinks some of my joint problems are OA rather than RA...the grip in my left hand has deteriorated recently because one finger doesn't bend, but there's no inflammation.

  • Sorry, but what is ISR?  

  • Injection site reaction. Could be to the active ingredient or to one of the excipients (carriers), no one seems to know. Latex has also been suggested, but I don't think it's used anymore. I swopped to Humira hoping that as it was made up with different excipients to those used with Enbrel I wouldn't react...but I have far only mildly...hope it stays that way!

  • Thank you Matilda!!

  • I am sorry to hear about the problems you are having with H&H and your Enbrel deliveries. I have been on Enbrel since 2009 and initially everything was fine but things started to go belly up 3 or so years ago and it seemed to coincide with H&H outsourcing their deliveries AND taking on customers from a company that had decided to pull out of the market so they were over stretched and had bit off more than they could chew (that from one of their staff).

    My consultant and health authority (Sheffield) got so sick of it they looked at alternatives to deliver the service. It took a while as they wanted to make sure the home delivery service was as bullet proof as possible and there were cost implications but they persevered and about 18months ago Boots took over and things have gone seamlessly ever since (I am not sure if Boots do the deliveries as the refrigerated vans are unmarked). You have the option of picking up your delivery at the pharmacy at the hospital or having a home delivery. The communication regarding prescriptions is excellent and delivery has been spot on.

    Obviously I can only speak from personal experience but it feels as though a weight has been lifted from my shoulders after about 2 years of hit and miss service from H&H. 

    I realise this doesn't help you and I hope things get better but it might be worth speaking to your consultant about alternative delivery options.

    Good luck going forward.

  • Thank you for telling me about your Boots delivery, maybe the fault with my delay is more H&H than I thought, they kept blaming the delay in the perscription not arriving, it was still late, but then making me wait for the delivery for eight days and even asking me how many I had left, not good!

  • I had the prescription delay excuse as well although it is hard to figure out who is to blame as you say they are pretty adept at passing the buck. I was very lucky as I ran out one time thanks to whoever was to blame and my consultant issued me with an emergency prescription for 4 injections (I do one weekly) whilst it was sorted out and my partner was able to collect them from the hospital. There have been no problems since the transfer to Boots (fingers crossed).

    I don't know if the difference is that the clerical and nursing staff are both based in the hospital with Boots so perhaps communication is better/easier but having said the when a system is up and running it is usually human error that causes problems.

  • My delivery has been changed from H&H to Boots - but don't know if this is going to happen to everyone!

  • Thank you for letting me know, I suppose it is the Pharmacy Dept at the hospital that deals with all this, maybe I should put in a formal complaint to them.

  • Hiya

    My story is slightly different. Have been on Enbrel for two years and deliveries by H@H have been excellent bar one. They normally arrange a delivery when I have 2/3 left in the box. In fact there was one occasion I had two left so I phoned H@H direct and asked when they were delivering. All was sorted.

    I was told by the rheumy nurse to let her know if there was a problem because It was her (the rheumy nurse) that had to send the prescription to the H@H pharmacy and so responsibility was with the hospital to authorise.

    It may be different hospitals do different things.

    I fear I would be in trouble if I had to wait for a couple of weeks for a delivery with no Enbrel to inject. Not sure what would happen as I haven't tried it but I don't want to take a risk yet.

    I would be phoning everyone but in particular the rheumy nurse.

    Hope this helps

    Hope you get a good supply very soon.

    Best wishes


  • Thanks for you answer, like you I have never had any trouble from H&H,think my trouble lies with the hospital. The biggest problem is getting hold of the Rheumy nurse, we only have 4hours a week when we can do this, and the phone usually switched off! 

  • Four hours a week? Unbelievable. Switching off phone not good! perhaps they switched off the phone to do the prescriptions to H@H!!

    Hope it can get sorted soon and never happen again. It is not right.

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