hospital "runs out" of steroid drops

[poppy]

OK I'm cranky again. I went to the hospital pharmacy to get three prescriptions that you can't get from a standard pharmacy. Didn't end up getting any of them. Reasons:

a) They've run out of prednisolone minims and there is a widespread shortage and might be a while before I can get them. How can they run out of something as widely used as steroid drops? I suppose in the meantime I'll have to try to get some FML to tide me over with all that lovely BAK.
b) Couldn't give me the cyclosporin as they didn't have it in the required concentration and weren't sure if the prescribing doctor had made a mistake in prescribing 0.05% concentration. They said they normally have 0.5% concentration only. If restasis is 0.05%, how can 0.5% be the "normal" concentration they prescribe?
c) Didn't get my azasite as the necessary paperwork hadn't been filled out to get this (the drug isn't approved in Australia, so the docs have to fill out some paperwork to get it). Now I have to wait another two weeks for my script (I already waited two weeks to give them time to do the stuff they were already supposed to be doing)

Hopeless! End Vent!

[Súil Eile]

Sounds like one of those days, Poppy You must have been furious at the pharmacy not working out properly. Hope the BAK doesn't have too much of a bad effect on you. Maybe spoil yourself a little over the weekend to compensate

[poppy]

OK still cranky. Heard from the pharmacy again today. No action has occurred with the azasite as the doctor wasn't in (he only works a limited number of days). The pharmacist is going to call the doctor when he's finally in and "see if he wants to bother" trying to get the azasite. What the? The doc knows that azasite is hard to get, he wouldn't have prescribed it if he didn't think it was worth "bothering" with! The pharmacist knows it's a corneal disease clinic so perhaps that's where her attitude comes from - dry eye is hardly worth bothering with isn't it.

Pharmacist also told me they still don't have pred minims and it could be months before they come in. How can the health care system allow this situation to develop where there is complete unavailability of a drug that is so essential for many inflammatory eye diseases? I NEED steroids not just from a comfort point of view but medically. FML don't work nearly as well and have BAK. They aren't a good substitute.

Recently there were a bunch of articles in the papers about pharmacies running out of a certain antibiotic and what a scandal it was. I guess when pharmacies run out of stuff essential to dry eye patients, it's not newsworthy.

The only good news is that they say they can provide the cyclosporin now, unfortunately this doesn't seem to be working anyway after about 6 weeks, though I'll give it a few months before I give up.

[littlemermaid]

Poppy, I think if they tried harder they could get what you need from Sydney/Melbourne hosps stock under reciprocal arrangements? Far as I understand it, pharmacies use different suppliers, it's finding the supplier with what you need. Now I keep plugging away as if I'm stupid until I finally get someone with a brain/who can be bothered.The difference is astounding.

Maybe 'phone/email cornea specialist's secretary to say hosp pharm can't fulfil his prescription, what do they advise? She contacts the doc wherever he is when necessary. Pred Minims or alternative are unavoidable for you, he thinks, aren't they.

Can you use his hosp prescription for Pred Minims at a high street pharmacy? Some are awful and can't be bothered, some are fantastic and order specials from supplier catalogues.

I'm also just wondering what would happen if you 'phoned eg Sydney hosp pharm just to enquire if they had any Pred or Azasite in stock? Time and again I hear the words 'you can't do that...' Er, just did. Otherwise, karate and we'll all come with you.

[poppy]

Thanks for your reply LM, the hospital scripts can't be used elsewhere. They only write hospital scripts for stuff that isn't available from normal pharmacies. But maybe your idea of trying to get it from sydney/melbourne is a good one. However from reading newspaper articles when there is a supplier shortage medications are rationed, someone with dry eye isn't going to be top of the list.

[littlemermaid]

Poppy, It's karate then. These days I'm calling it chronic eye inflammation, severe in your case, might bump you up the list. Is Pred Minims not available through GP then? In case it's ever useful, we've got repeat prescriptions for high street from GP on consultant's diagnosis letter. We request a photocopy of the hospital prescription 'for the GP'. The pharmacist says 'blah, blah, consultant's letter to your GP'. I say 'you should see our GP's filing system, ha ha'. Then they photocopy, put a line through 'this is not a prescription'. GP says 'OK, whatever, long term management' and writes out prescription for high street pharmacy. Managed to do this with a few preservative-free 'specials' that were ordered in.

Also, my kind friend works in a GP practice issuing prescriptions and she said 'I've 'phoned everywhere, pharmacists say you can't get x on the high st'. So then I 'phone the very big chains and find one of them will.

Hope this is empowering in some meagre way. We feel the same. Completely beholden to people who say 'my hands are tied, it's up to the consultant, he's not around'. It's a diplomatic nightmare. Have you found an ally in the camp eg sensible woman on front desk eye clinic or the dude's secretary? Keeping in mind we've been refused treatment three times now due to crossing the line and had to change hospitals... This is what I mean about diplomatic.

[poppy]

Keeping in mind we've been refused treatment three times now due to crossing the line and had to change hospitals... This is what I mean about diplomatic.

You've been dumped by a public hospital for being "difficult"? I wasn't aware, here in Oz at least, that a public hospital was able to dump patients for being difficult. Certainly I imagine they can ask an abusive/violent patient to leave or be removed at least temporarily, but I thought there was no way a public hospital could dump someone just for annoying the doctor. Private doctors of course, can dump pretty much all they want, as long as you don't have an emergency.

[littlemermaid]

Oh yes, I'm so proud. We've been refused treatment loads of times (this for an 11 year old). I'm really not difficult. You be the judge.

-GP1 (refused referrals for Moorfields + county hospital + local second opinion). Chicken, losing it.
-GP2 (refused emergency referral for obvious drug reaction, 5 day headache, vision loss). Didn't know visual disturbance = raised CSF pressure, poss optic nerve damage.
-several emergency eye clinics + consultant's secretaries (recurrent undiagnosed red eye inflammation 'you've just seen the consultant again'). Unqualifed admin staff doing triage.
-county 'corneal specialist' (total misdiagnosis of SPK as Thygesons, serial discharge on steroid alone, unmonitored, didn't recognise bleph or dry eye). Nasty old guy.
-certain specialist ophth team (hired top guy for advice over their heads). Patronising me...
-famous derm professor (contradicted him on MGD/Accutane in front of class of post docs, he's an expert witness on retinoids). Not current, 'children don't get rosacea'.
-county eye triage service 'don't see under 16s NHS, we would if you pay private because the NHS rules don't apply'. Trying to help.
-and my personal favourite, alienating the entire department by talking to my favourite consultant in private practice, heh heh. He was worth it though.

Now in the unfortunate position of reading too much off the internet 'well you seem to know what you're doing so I don't need to see her again for a while', and unable to access help with flare-ups. Aargh, no. What about the surface damage? It vascularises with no signs. I can't see it with the naked eye. Please... noooooo... 'We have got other patients you know, go to any A&E'. As ColinP explains, we are in an NHS budget squeeze.

I wish we had co-care optometrists in the UK who are as well-qualified as the US optometrists and could prescribe for flare-ups. This would be a huge help for you in Oz too - management, monitoring, advice, and referral to hosp consultant when needed.

I do understand what the problems are and sympathise hugely with medics. I am very, very grateful and appreciative, but they do need to let us work on this together. I'm trying to fix someone else's dry eye, remember. It's heartbreaking to bust a gut to try and fix or even improve it, find it chronic or worsening, trying different approaches, poor patient suffering. Again, this is what I mean by diplomatic. I am really grateful to anyone who's trying but we're all here to learn together, if some of these docs would just get over themselves, eh? The truly great docs we've met have been open minded, considerate and cool.

This is what currently interests me. How do you get a doc you like to work with you? Earlier threads suggest mailing the research in advance so they can pretend they'd already read it. It's that bad.

[poppy]

Well I've just lodged a formal complaint with the hospital about the inability to get my prescriptions. We shall see what happens.

[littlemermaid]

Wish you the best, Poppy. I've had good results with mirroring back the catalogue of disaster. There's a big cover-up-let's-pretend-everything's-OK thing going on normally, so as you uncover the pot of worms in all its awfulness, in a reasoned tone, they sympathise and make those calls.

Re getting dumped, these guys are far too clever to call for security and a straightjacket. What happens is absence of interest and sensible follow-up. Docs with the most integrity will say 'actually, I don't know what this is, why don't you try...' Although I have had the outright refusal to see her on referral, discharged many times.

Very interested to hear how they respond and how soon they can get your meds if they try. Surely there's an alternative to Prednisolone Minims for a start. Azithromycin might take a while, fair. Certainly available from France, US, possibly Moorfields Pharmaceuticals, UK, if they 'want to bother'. Are you just using FML and cyclosporin? Cyclosporin was easy for them, wasn't it?

[Súil Eile]

Unqualifed admin staff doing triage.
.

This drives me insane! It's so unprofessional (and probably illegal for them to be making any medical suggestions at all) but it seems to happen so often.

Poppy, I really hope you get somewhere with this. Sounds like they need a bit of a kick in the ass to get themselves in gear and do something. You are as much their patient as anyone else and you deserve a decent level of care.

[poppy]

This drives me insane! It's so unprofessional (and probably illegal for them to be making any medical suggestions at all) but it seems to happen so often.

How about doctors doing the same (triage) without examining your eyes. I am sure it happens all the time, just because we are labelled as dry eye we can't have anything serious wrong with our eyes, or anything else wrong with our eyes, even if in severe pain and have a history of severe complications!

This reminds me of when I was still "learning" about dry eye. I tried calling the last eye doc I had seen and left a message with the receptionist to ask for a repeat of steroids because my eyes were bad again (I know, it was never going to happen, but I was still learning). The last time I had seen this eye doc I had a corneal ulcer. The reply came back from the doc "can't give you steroids without seeing you, use some artificial tears" - not even a suggestion to come in and see them if things didn't improve!

[poppy]

Very interested to hear how they respond and how soon they can get your meds if they try. Surely there's an alternative to Prednisolone Minims for a start. Azithromycin might take a while, fair. Certainly available from France, US, possibly Moorfields Pharmaceuticals, UK, if they 'want to bother'. Are you just using FML and cyclosporin? Cyclosporin was easy for them, wasn't it?

When I submitted my complaint I was told I'd get a response within 5 days. Turns out the "response" is an automated letter saying it will take 35 days to get an actual response. By which time I will have no steroids of any description left.

The azasite is now "in the process" of getting ordered, I understand it takes a while because it's not approved in Australia, but it has taken over one month just for them to START the process of ordering it.

And it seems there is no alternative to pred minims. I guess it is the only unpreserved steroid drop. Still, preserved steroids are better than no steroids in my case.

They can do the cyclosporin, at least.

[littlemermaid]

Poppy, I do feel if anyone could find a path through this level of ... it's you. Sometimes it feels like we're pioneering our needs for the other poor patients too, esp the ones who think doc knows best and someone's in charge...

Is the nice consultant or his registrar saying there is definitely no PF version of a suitable steroid? or is it impossible to access him/team? You are definitely now His Patient. A consultant's job description for public sector service includes a full-time duty of care to the patient, they are contracted to ensure this responsibility is covered in their absence, this may inc a pathway through A&E, corneal & external disease 'team' eg registrar, or another consultant covering service. I've had progress and quick response emailing the consultant direct. Once they get over the initial shock they realise it's not a bad way of dealing with problems immediately as they arise without having to choke up the clinic.

We are same, today even. She has been given Cyclosporin for chronically reinfecting MGs and toxic eye surface - far as I know it shouldn't be used with bacterial infection. But how to get back to the doc diplomatically? We're also getting Azithromycin soon, but I am not excited.

Why is your pharmacy so bloomin' slow?

[Bennyboy]

Poppy I have also been affected by this. I am in Perth.

The hospital ordered in some Minims from overseas they are Bausch and Lomb brand in a purple box. Thye do not need to be refrigerated. They are not agreeing with me at all. In fact they make my eyes burn and go red.

The brand I usually have are Chauvin and are in a blue box. I so so so hope they are in stock again soon. I desperately need this brand.

I can't seem to find any information about the shortage.