Still unbelievable

[Sydneychihuahua]

Hi everyone got in touch with the surgery about not getting my meds they said why did I need 5mg and 1mg tablets???? This was the receptionist I couldn't be bothered to explain to her how this works because I have had such a worrying weekend thinking they were not going to give me my meds. I broke down not happy with myself for doing this and she put me through to a doctor who had no idea why I was told my meds had been stopped I asked her to find out who had put me through all this stress she said she would and get back to me. There is now a prescription ready for my husband to pick up for me that's got to be the worst weekend ever thank god I have got all of you to talk to I really appreciate all your feedback and your concern xxx

[DorsetLady PMRGCAuk volunteer]

Thank goodness -and I hope someone gets a right telling off! Although I have my doubts.

[PMRpro Ambassador]

Alls well that ends well - but why did it have to be so stressful and distressing and plain SCARY.

Oh I don't know - I have ended up with the correct result and implemented very speedily after some tears when I really didn't know how I could go on as I was. After 2 years of dreadful back spasms and being told I couldn't have the treatment I knew from experience was most likely to work "you might bleed as you are on blood thinners", my rheumy did the injection using ultrasound to avoid blood vessels. And I have been able to walk almost normally since.

[SnazzyD]

I think sometimes it is important to show how one really feels. As a result of yours, the person who made a life threatening decision will be educated.

[Sydneychihuahua in reply to SnazzyD]

I never looked at it like that I hope she takes it all in. The trouble is when we are on these tablets we look normal(what ever that is)

[SnazzyD in reply to Sydneychihuahua]

And we like to be liked by those on whom we depend there.

[Excelsior80]

I had a less drastic one, thyroxine, just requested prescription not issued, no reason or contact, I found it was an error their side, theyd thought I was ordering too often but I wasn't. Not life threatening but really annoying to sort out, and they could easily have contacted me first to check situation

[PMRpro Ambassador in reply to Excelsior80]

It could have been - if someone had inferred on your enquiring that it was no longer needed, you had been on it too long. There are patients who DO believe everything they are told and wouldn't argue.

[Bcol]

Thank heavens you have got that sorted. I hope that the doctor did find out who had made the original error and given them a piece of her mind. (had to be polite there!!!). Even though you've had an unforgivaably bad weekend it could have been much worse.

[PMRpro Ambassador in reply to Bcol]

You assumed it was a her though!!!!!!! "given them ..."

[Bcol in reply to PMRpro]

Thank you, no idea why I did that I have amended it.

[PMRpro Ambassador in reply to Bcol]

Hehe - your inner misogenist was trying to get out 😉

[Bcol in reply to PMRpro]

Think I was probably mixing up whoever it was with the receptionist. That's my story anyway!

[PMRpro Ambassador in reply to Bcol]

I will believe you 😘

[Saffron23]

Hi, so sorry you have been through this! I had a similar situation in December. But they were not stopping the Pred but instead put ridiculous time limits on when I could reorder. And then the same as you they could not understand why I needed 1mg & 5mg (some at the surgery have no idea of doses and for instance if you are taking 6mg every day, 1 x 5mg & ax 1mg is better than taking 6 x 1mg… of which you soon run out of a packet of 28 tablets 1 mg tablets!?

Eventually after making it as clear as mud on a very long email, a very apologetic pharmacist got in touch and my prescription was ok’d. Our pharmacy takes at least 5 days to administer prescription requests so that adds to the stress too…

All in all it was a very stressful time and I became tearful ( not like me at all), I then went down with the respiratory virus and after that H.Pylori (stomach ulcer). And yes I think all the stress contributed to this!

Wishing you all the best Sydneychihuahua, look after yourself and keep smiling x 😊

[Indigo2417]

I’ve had problems with repeat prescriptions too. I’m currently on 6.5mg just started a slow taper to 6mg. I can only order 1 month of 5mg at a time. Frequently, over the last year I order the 5mg and get sent 4 boxes of 1mg and I have to keep ringing the surgery to get it corrected. I’ve spoken to GPs on two occasions and they couldn’t tell me why it was happening. This last time I rang and asked to speak to the Practice Manager. You can do without the unnecessary stress every time it happens and its extra work for the surgery and the pharmacy. I shall wait and see what happens with my next order…….

[Stills in reply to Indigo2417]

When I had an issue with medication and wanted to complain to the Practice Manager I was told the GP I saw WAS the practice manager as well due to a vacancy at that time. He was also the only GP in the surgery at that time and I later found out he was a locum! Bit of a closed shop then.

[PMRpro Ambassador in reply to Stills]

That's when you go to the local commissioning group, whoever they are these days ...

[Indigo2417 in reply to Stills]

Our surgery is run by the local health board and all our GPs(3 I think) are locums. You don’t often see the same one twice and so there’s no continuity. I know they write notes, but that isn’t the same as seeing the same GP regularly. I asked to speak to the practice manager, but the message went through to the assistant manager. I don’t know whether me speaking to her will make any difference in the long run, but I was fed up with having to ring and get the correct prescription.

[Cavey33]

I'm so glad to hear that it's sorted for you - but such a shame we have to advocate for ourselves so hard.And please don't feel bad about crying - look how it changed things! It was an appropriate response to how you were being treated and probably did you a lot of good to get it out.

Sadly, it's often the golden ticket. Isn't that awful?

Take care of yourself, and I hope the rest of your week will allow you to recover x

[Daffodilia]

Don’t worry about breaking down - it got results and you had good reason

[Cfmad298601]

All this adds to the ridiculous scenario, in the uk anyway, that prescriptions can only be done at monthly intervals. People like myself and many others have long term/lifetime issues that need regular meds. Surely it should be up to the doctor or health specialist to decide whether meds can be given for any length of time….3 or 6 months even. Totally understand if people have illnesses where they are likely to recover and therefore can be monitored more effectively in the shorter term.

I work full time and trying to organise scripts for multiple meds to make sure they can be issued in time and I can run around collecting them needs a degree in logistics 🙄 all very stressful. As I’m also on MTX that all adds to the mayhem as I have to coordinate bloods tests too otherwise they won’t issue it.

Not to mention all the wasted time for doctors and pharmacists keeping up with repeat prescriptions…..

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

It’s not rocket for any surgery to get their act together and issue all medication on a monthly basis on the same day no matter how many different long term health issues the patient has - in that instance the dose is usually at set level. Obviously with PMR and/or GCA it’s different -and can be treated as such.

If your meds are prescribed on various dates suggest you have a word with the practice manager to get them managed better.

[PMRpro Ambassador in reply to DorsetLady]

Always then messed up by packets with 28 or 30 - neither of which fulfil a monthly re-order!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

That certainly doesn’t help…

[herdysheep in reply to PMRpro]

...and sometimes tablet strips cut with just a couple on a strip, which I have probably thrown out if they were buried in the leaflet. They often decant my e/c 1mg with no indication of expiry date. Whilst I am having a minor rant - my bp meds are now all whit tabs looking identical to my K2

[PMRpro Ambassador in reply to herdysheep]

That habit in the UK of including a few tablets in a strip that has NO indication of what is in it infuriates me!!

Whole new meaning to the "the little white tablet for my heart doctor ..."

[Stills in reply to Cfmad298601]

Exactly and well put, it’s not as if any of us take these medications for fun but because our bodies need them or we get worse and need even more medication!

[Bcol in reply to Cfmad298601]

We have no problems with our surgery. They do all repeat prescriptions on a three monthly order. It's automatically sent by them to the chemist and all we have to do is collect it. For anything that's not on a regular day by day take we just put in a prescription request and it's always issued straight away.

[Indigo2417 in reply to Bcol]

It does happen with our other meds. Pharmacy put in request electronically and its generally issued within a day or two. In fact the time before last I ordered my 5mg and they were issued the next day. ( I nearly fell down in shock) However, that was short lived, because this time the Pharmacy rang me to let me know that the script was for 1mg again. Incidentally, my husband is on two long term meds and they issue his two months at a time, which leads me to wonder if they don’t trust me with mine.

[Bcol in reply to Indigo2417]

It's strange how different surgeries work. I used to work out what Pred I'd probably need for the next four or so months and that's what they would give me. No quibbling or arguing.

[Indigo2417 in reply to Bcol]

It certainly is. I try and give myself 2 weeks leeway in case I have a problem, but if you order too early, they go back to the pharmacist and say that you’re ordering too soon. It seems counterproductive that I’m ordering approx every 28 days, when it would save everyone’s time if they could stretch to two packs at a time. Provided that they managed to send 5mg of course.

[Cfmad298601 in reply to Bcol]

Ours issued a notice, a couple of years ago, saying that prescriptions would be inline with NICE guideline's….that only done at monthly intervals. A right pita!

[Bcol in reply to Cfmad298601]

Just makes a lot more work for everyone with no gains,. Seems totally counterproductive for people on long term medication.

[CocoaChanel]

Write an old fashioned letter on paper and keep a copy! So far I’ve found that it works ever time. I’ve had a problem getting the right number of 5mg v 1mg pills a couple of times. Each time I’ve written a letter stating why I need whatever it is I need and then followed it up with a visit to reception if it isn’t dealt with immediately. I’ve discovered in our surgery that all mail goes through a ‚mail team’ first. Then for prescriptions it goes to the ‚prescriptions team’ so my letter may never be seen by the doctor even though I address it to her. With everything these days I find that I have to be assertive and forceful to be noticed - dispel the illusion that I’m a nice, compliant old lady.

[random901]

Well done you! Hope you recover soon from all the stress. These conditions are bad enough to cope with, including pain, stress and tears, without extra hassle from pig-ignorance. I'm having trouble with repeat pred prescriptions, too. Think I'll take advice from whoever suggested hand-written explanatory letter to those concerned. Maybe in red ink and capitol letters ...

[Bonnie-ma]

This episode must have been so distressing. It seems as if there are now so many obstacles that have been put in place widening the communication gap between patient and doctor; it seems to me not only does the patient get a raw deal as a result but now the doctors can’t get to the bottom of why things go wrong.

[Doraflora]

thank goodness you’re all sorted now!

It’ll be interesting to see if the doctor does get back to you - and how quickly.

But me being me, I would push things until the inept person is identified and then put in a complaint to the practice manager. This could happen to someone else in the future if not.

Now go and relax. x

[123-go]

I’m pleased to hear that your medication problem has been resolved; you were put under totally unnecessary stress. 💐

[Lasagne777]

So glad you took action and all sorted out but next time you see the Dr who said you have been too long on pred .perhaps you can educate her in the treatment of PMR and the risk in stopping abruptly . Show your NHS emergency steroid card too. Sorry you had such a stressful weekend but good to relax now and recover.

[Maryis80]

I had a problem with repeat prescriptions. a while ago and it took four letters from me to the surgery, hand delivered each time,to get it sorted after which I had a message with apology from the managing partner!

[Chicken123apple]

disgusting!! my wife’s forever arguing with her doctors receptionist, nightmare some off them. Don’t know who they think they are.

[Viveka]

Poor you. Worst nightmare! Glad it's resolved, but they need to find out cause that would have been downright dangerous.

We have a new prescribing technician at our surgery. I wonder if your situation is something like that, though surely they would not have the power to cancel meds, just amend prescriptions.

Technician rang to say she wanted to prescribe me exactly the amount of pred I was on for a month and to cancel the 1mg which would have allowed me taper. As I'd already gone up by 5mg and thought I might have to increase by another 5, and it was Christmas, she caught me at a bad time and I let the tears flow, which worked a treat and she apologised and reinstated the bumper pack of pred I order as and when I need. Never worry about having a cry, sometimes it's a good strategy.

Next month she rang me to say she hadn't received my consultant's letter and as I was now on 17.5 she was going to amend the prescription for 2.5mgs. I told her I was happy with cutting the tablets and I wanted it left alone. I know she is trying to be helpful and she is a technician not a doc but there is always that fear of not getting the meds. X

[Pr0jection]

So pleased it's been sorted. Now you can relax and put it out of your mind....

[Polym]

Mines was the same because it was a different doc phoned and asked who gave me both and why told him I needed them for tapering down and what I had don't think he even looked at file first glad u got sorted

[Pollyone]

I so understand how you feel as it is a battle with the condition at times let alone we have to battle with GP’s over prescriptions too. I’m usually pretty strong but I was upset too that I was having to prove my needs (3 times so far) when I’m daily trying to reduce the steroids but having to go up at times when I can barely get out of a chair. You are not alone x