I yell you now I am livid. I started trelegy 2 months ago, after having 3 viruses but the last being the worst. My pulmonary nurse said this is the last thing we can try, so I tried it and have been doing my steps every day, trying to beat my last score. I put in for a salamol yesterday although it's not due until the 9th. What I don't want to do is run out before it's due, understandably. Doctors receptionist rang me earlier and said the doctor refused to give me a reliever until a certain date. I am sorry for the long post but I know for a fact I will get anxious if I don't have one as a back up. If I could buy one over the counter I would. But to me it's like dictating to you. It's so annoying. They don't have these conditions???????
Copd reliever : I yell you now I am... - Lung Conditions C...
Copd reliever
This is so wrong!!! It’s dangerous to leave you without a way of relieving your chest tightness. Also, as you say, it’s stressful, which makes you more likely to get breathless. I really think you should take this up with the Practice Manager.
Here, and on Facebook, I’m seeing more & more people whose gps are rationing their bronchodilators. I wish ALUK would do something about this. I’ve not seen anything. Imo they’re too busy worrying about the environmental impact of our inhalers. They should be lobbying for us!
It is annoying, but in Wales you can't get one over the counter. If you can somewhere please let me know. Please 🙏 😁
Bl**dy hell, why not I wonder? What if you lose it like I did? You could get one from an online chemist
Agree, so bl***y wrong. 'They' should be banning all unnecessary aerosols like flipping deodorants, household sprays - air fresheners?? I mean wtf, not tiny life saving Ventolin like inhalers. I bought two Ventolins and a pack of clarithromycin in India a week ago total cost was £7 ! I intended to get more but there wasn't a chance to find a pharmacist.
My gp surgery refuse a rescue inhaler period as I'm on MART regime of Fostair which is great for every day but not during severe infection or exacerbation. Grrrr
I wish I was in India now 😉😁
Try trusledtablets.com- I get most meds from them. Used them for years.
Cheers 😉
Very sensible to get those, if you keep ordering your prescriptions on time you’ll always have one in stock now.
I don’t know what’s happening with some gps, they no longer consider each patient as an individual, they seem to be bringing in these blanket restrictions, based on what I believe is purely guidance from NICE.
Does anyone else feel the same?
Definitely!
Yes
Oh yes indeed After 45 years in South Africa, came back to UK in 2020
After first class medical, I feel I've gone backwards, and quite a way at that . Health has deteriorated so much I don't even recognise myself. You are not alone!!!! Blessings and love xxxc
So sorry chook, it's like a third world country here now with the NHS.
Yes it's a case of what they think is right for one patient is right for all!
Yes, good example is they put me on trimbow and all it did was make me breathless and dizzy. When I told the doctor he practically laughed in my face, should work for everyone he said. Yeah OK 🤣🤣🤣🤣
Oh… such was my annoyance on your behalf that I forgot to say you can buy one from a chemist. Just show them your prescription. I did that once, when I’d lost mine. I think it was about £6. Or you can buy one online
You need to change your doctor asap, never heard anything like it in my life.
This is sooooo out of order! I am livid for you! You shouldn't have to be anxious about a reliever, the clue is in the name! Neither should you have to go and buy one!
I would speak to the practice manager in no uncertain terms.
How are you finding the Trelegy? I'm not sure if that is the last thing to try, I was on it for a few years, but have since moved on to Trimbow, so maybe not your last hope?
xx
I had a funny turn on trimbow, scared me to death and that's why she put me on trelegy. I'm a little more active on it but it's a slow burner at the moment 😁
Ahh, I see! All the best xx
I'm just finishing 4th month on Trelegy (for dry bronchiectasis, not COPD) and am really pleased with it - big improvement in breathing and ability to exercise (only issue is slight exacerbation of husky throat, despite rinsing, gargling, etc..) Think it may take a little while to get full benefit, but hope that you'll find it as helpful. Re reliever, your GP's reaction sounds totally crazy - few things more likely to exacerbate a breathing issue than the thought that you have to wait a few weeks to get your necessary meds! Try chemist or online pharmacy in the meantime, but I'd be inclined to ask GP for explanation and, if none is forthcoming, change your practice? Good luck!
Thanks chook 😉
Grrrr! The guidance from above seems to be designed to make our lives more difficult. Are we going back to Victorian days when the poor and the sick were punished for being poor and sick by being shut up in the workhouse?
Sure feels like it sometimes 😕
I think they are just thinking of their finances and not their patients needs. Its disgraceful and agree it makes for more anxiety. Can you put in a complaint. My session with nurse in group of practices was very finance focussed last week. Cut back to cheaper inhaler, not supporting rescue packs and wanting to cut me down to one puff morning and evening instead of my normal dose of two puffs, despite the fact i have been on max dose of 8 due to bad asthma after a bug in last couple of weeks.
I have had this a few times . I think it must be one doctor in my practice that is just being ridiculous. I take Methotrexate for my rheumatoid once a month and order it after my last tablet because the doctor has to sign it and the chemist has to make it up and then get it to me. I had a few months where this arrived after a week , which makes it late to take and then messes up my dosage times. The last time this happened I really lost my temper and asked which doctor was doing this as I was going to report him, reception said they couldnt tell on the computer who it was , strangley enough it hasn't happened since. I now have spares in so I don't have this worry in future x
Good for you. Don't get me wrong my inhaler isn't due until the 9th Feb, but then you have to factor in my doctors not open on weekends and it's only 2 weeks away. Plus like so many have had a bout of viruses. She even said herself when I went up there that she's seen really healthy, fit people up there that this virus has taken them a couple of months to get over properly. It's like he says she says. 🤯🤯
I had the same problem!
By chance, I was due to go on holiday, so asked for an additional prescription of Ventolin, which I got. Since then, for whatever reason, I have had two lots of ventolin on my prescription and this has taken away a lot of anxiety - they really don't understand!
Getting ventolin instead of salamol is rare around here. Getting them when you want them is even rarer 🤣🤣. I'm due to see the nurse on 6th Feb and will have a very strong conversation with her. It's true what you said, if you haven't got the disease, you might be trained to treat it but you have no idea what it's like. 😁
Exactly - I am lucky that the girl who orders the medication is very sympathetic and has issued it as urgent in the past. I can only describe my doctors as useless. I've actually found the COPD nurse a lot better. I hope all goes well for you at your next appointment!
Thanks 😉
I am absolutely RAGING that you were treated this way!!! As far as I'm aware the recommendation is that you should always have spare inhalers!!! I'm also pretty sure I was told to have one always within easy reach ...handbag,car, upstairs and downstairs!!!! Definitely report this to manager at your health centre...make sure also that your complaint is recorded and a note put on your file ... absolute disgrace!!!;
Thanks chook 😉
Wow how mean - I remember when I was first diagnosed with emphysema - I was given an inhaler called Duovent, then Combivent. I was told to take as needed - In short if I was running out, I got a new one,
If you need a reliver then you do, if GP was not happy he/she should have called you in to see why ITO you needed Samanol early. Crazy .
That is appalling, it's so wrong! I always try to make sure I have one in hand and order again as I start the last one. They must understand that adding to your anxiety is not helping your condition one iota. I would try again and if you get no luck then make a formal complaint. Or, if you can take your prescription to a pharmacy and tell them you have run out, they might let you have one. I do hope you manage to resolve this asap, I feel so angry on your behalf. Good luck! Sally xx
Thanks Sally 😉
gps and consultants etc don't live in the real world
You ain't kidding chook 😉
my Ventolin / Salbutamol is rationed too . I ordered one , then refused the next month .
my daughter bought an emergency one from the chemists after she forgot hers .
Its disgusting 🫣
I actually have a couple un used as ive changed over to the 'Easy haler & the Trimbow' where abouts r u?? Maybe i could post them??
That’s thoughtful of you 🥰
Oh no, I told my doctor I need one to keep upstairs and one down as I forget to take it with me, I always get 2 on my prescription no questions asked. Maybe speak to your doctor if you can and tell him it is making you anxious, which you really don't need. Really hope you get it sorted.
Thanks chook, back up on the 6th and going to give them a piece of my mind believe me 😉
I had this. Had it out with gp who backed down. Pulmonary nurse said anymore trouble let her know and she will sort it. Consultant said same to me when I saw him in December.
Wish they were my consultant 😂😂😂
I have two ventalin inhalers a month…..respiratory clinic recommended that I need two and GP didn’t argue. Years ago, 2 ventalin would be standard supply, not anymore sadly. Suggest you ask respiratory to make recommendation good luck
Thanks chook 😉
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