Hi,I have just received my rescue pack from my GP,but only got antibiotics,I called as I thought they had made a mistake but apparently they are not giving steroids with rescue packs any more,with no explanation. Has this happened to anyone else?thankyou.x
No steroids: Hi,I have just received my... - Lung Conditions C...
No steroids
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Bubba39
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I had to request some more Ciprofloxacin for Pete as his chest has been bad after a cold. No steroids were sent because he takes 10mg per day anyway and has plenty. If you need the steroids they should be provided. Ask to speak to your GP as you know what you need. Xx
Hi sassy hopefully Pete is OK now my own dr has left so I just have to see any Dr I've spoken to one Dr but he said its the rules so he can't help he did say it was wrong the way certain medication isn't allowed to be given out to patients anymore
Pete’s doing better thank you and our doctor is good at giving out the medication Pete needs. It’s very wrong not to give patients what they need. Hope you’re ok xxx❤️
Good petes doing better its great you've got a good doctor aswell your right it is wrong not to give patients the medication they need im not to bad today thanks sassy x
I don’t have a rescue pack at all anymore.
I’ve never been given one
Strange. I have steroids - prednisolone - on my repeat prescription, but no antibiotics! No idea why. I havent needed the steroids for several years.
Antibiotics cannot be given on repeat because if you have them too often they don't work your doing well not to need steroids for several years well done love😃
I have antibiotics on repeat prescription and pred if my rescue antibiotics don't work they give me something different usually ciprofloxacin
unfortunately happening more and more uk wide
Thank you.it is so frustrating when i called the GPs they didn't even give me an explanation.
I think your post answers a question I have. Last visit to thoracic consultant he prescribed me a rescue pack for emergencies I assume, which I've never had before.
It was antibiotics and also a script for steroids. In my ignorance I thought the steroids were for immediate use so I took them then.
Now I'm wondering if they were to be kept as part of the rescue pack should I ever need to use it😗.
Hopefully you will be able to get some more steroids to replace the ones you have taken.x
Yes your rescue pack is steroids and antibiotics to be kept if we have a flair up as we all know they usually start ona Friday night or bank holiday weekend when we can't get them 😀
That is very true.x
Hi I allways had rescue pack but seems they don't give them out anymore a few weeks ago I had chest infection and struggled breathing I wasn't allowed a rescue before doing sputum test which I done but it took 2 weeks to get antibiotics and steriods by then I was alot worse I had to see a doctor who referred me to respiratory specialist but seems in my area there isn't one a nurse rang me up to ask questions honestly I know more than what the nurse knew but no more rescue packs at all here in lancaster uk when I saw a doctor he was concerned about how I would get home my daughter picked me up seems rescue packs have been stopped .
Grrrr!
Yes this has happened to me. My surgery stopped rescue packs quite a while ago . I think they are stopping steroids as alot of people who have antibiotics dont need them but stupidly the doctor still doesnt see you to listen to your chest. When I get a chest infection I always get inflammation and this is what the steroids are for x
I also get inflmation but as you say they don't listen to your chest because they don't see us anymore I was lucky I managed to see one I live about 10 minute walk from nearest doctors I cant walk far im end stage so struggle with alot of things by time I got to drs I was alot worse the Dr I seen was also worried about me he even asked if he could get someone to take ne home but I said I'd get my daughter im ok now thank God but its a nightmare for us trying to get what we know helps us .
Thats really bad I do hope your gp realises that you cant afford any delays when you have an infection, perhaps a note from your consutant would help x
Thank you .
That’s despicable. It seems as if they want you to end up in hospital. I really don’t get it. Glad you’re doing better now xxx❤️
Thanks sassy xxx❤️
I had to get sputum test done and blood test means getting to hospital , and surgery . Waiting for results .
Then no steroids only doxycycline.
Really hope you get results soon its so frustrating the way things have changed so much with drs and hospitals good luck with results .
Hi where do you live. I live in Cornwall and have no trouble getting antibiotics. Having said that I message my respiratory doctor secretary because its been 18+months and the reply was they have a backlog. Unfortunately my surgery has only COPD clinics with asthma but nothing for bronchiectasis. You really do have to fight for your medication and seeing the appropriate doctor. Good luck
I'm in Cornwall too and so far I can still get my rescue antibiotics, although all my consultants appointments have been by phone since COVID. RCH is my hospital.
Apparently, spirometry is being done by the physio dept to keep us out of the respiratory dept (trying to limit exposure to COVID) and taking xrays instead to determine if there's a problem as I no longer produce enough sputum for a sample.
Should have had spirometry just after Christmas, but still waiting (xray was done within weeks, Gp have me the results, nothing to worry about) . After 3 months had a text asking if I still wanted the appointment 😂. I've not been allowed steroids since I became colonised with pseudomonas.
I live in lancaster it comes under Lancaster and Morcambe Bay medical practice when my own family Dr was available she was a big help and backed me all the way
This makes me so angry,when you can't breathe, waiting two weeks seems like a lifetime.x
It was scary for me but im ok .
When I was at the G.P.s the other week he mentioned a course he’d attended, where it had been suggested the routine prescribing of steroids is now frowned upon. Let’s see how that might work.
Hi,I don't have a rescue pack any more. I had to use my last one just over a year ago.
I asked my GP for a replacement but she told me that they won't subscribe anymore.
I remember that I was a bit upset and scared. But I call 111 if it goes wrong and they help is sometimes amazing.
Doctors often quote NICE guidelines when putting their case for the way they are treating patients, so i wish they would make things absolutely clear on the supply of rescue packs and whats in them, because its clear from everyone here, they have different stories about it from all over the country.
I agree.x
thethey won't let me have one any more, either. "Change of surgery policy" was the response I got when I phoned up about it.
It's a bit of a worry as I have had steroids in my rescue pack for 15 years..x
Hi Bubba,
Just like many that have replied to you, I had a rescue pack for almost 10 years since I had my lung removed , This was no problemuntil the last couple of years . I kept having to go to the surgery and see the doc before getting a presription, then overthe last 3 months I have just had antibiotics and no steroids . My copd has got worse and they said I may havemto change my antibiotic to Azithromycin . So 2 weeks ago I went to the doctor very short of breath. I mentioned the new antibiotic but she wasnt sure of the procedure with them , so she said she would ask at the mdt meeting and call me next day
I got a text the following day saying they didnt think I needed them yet and until I had at least 4 exerbations in a year they wont give me them ,, I had already told them I have a flare up at least once a month.
So I now dont have any rescue pack and the antibiotics and steroids are no longer on my prescription .
I am going to have a word with the respiratory nurse and see what she suggests..
I think in your case having had a lung removed I would speak with your consultant and ask them to write to your gp saying that you need a rescue pack, so terrible that you are being delayed treatment x
Thanks for reply I have been discharged as it was 2012 when I had the cancer. However my concern is if I get a bad infection i have a poor immune system and with 1 lung will I be able to cope. Its seems the older we all get the less help we get.
My respiratory nurse is away for 2 weeks and then I shall talk to her first. She has been far better than any of the doctors. xx
You are so correct in that the older we get the worse things seem to be. I am l peased you have a good nurse to look after you, as you say they are better than the doctors sometimes x
I was in hospital recently with respiratory failure due to COVID,they wanted my daughters to think about a DNR,due to my age,I'm only 63,😡
Shocked to hear that!
Interesting. My rescue pack has never contained steroids, and that suits me fine. They give me 2 packs of amoxicillin 500 mg for me to keep in case of flare-up. Occasionally, receptionists have queried this when I've asked for them, and I've simply said (or emailed) "in accordance with NICE guidelines". That has always been accepted by them. That said, I must say that my bronchiectasis is now mild, and I appreciate that for many others on here that's not the case. Incidentally, that's been helped by walking (which I now find increasingly difficult) and singing (which I keep doing and helps hugely). Stay well, everyone. ❤️xxx
you mention your bronchiectasis is now mild, was it worse before? I didn’t realize it can get better, so if it does that is very good news,
It was much worse. When I got a chest infection it almost always resulted in a minimum 4 weeks' stay in bed. I did find that walking helps. Also singing. Join a choir where you live. There are plenty, and you make friends into the bargain. Great fun, brilliant for the chest. Because of my odd-shaped bronchial tubes, I can hold a note longer than anyone else in the choir! xxx
Thank you for the reply. I have had COPD for years but my last CT scan showed mild bronchiectasis, which I know nothing about. I was/am concerned it was progress like COPD does but to learn it can also improve is very encouraging.
Thanks again.
I was given a new rescue pack in March with no quibbles. My surgery is not run by a private health company. The physios who ran my recent pulmonary rehab course are not keen on rescue packs, but I think that is the counsel of perfection. I did not know I was going to be really ill- oh it's just a cold; I can manage- until I was too ill to take a sputum sample in. I was glad to have Doxy and Pred to hand and they did indeed see off the bug.
I am very sorry that some of you have less obliging surgeries. I am afraid that people are going to end up in hospital or dead because of this new policy.
PS. Sputum samples do not always yield results first time. I had a very long wait once before a second sample revealed the bug which was lurking in my lungs.
It's frightening how the GPs are using NICE guidelines to gamble with our health. If the consultant says a patient needs a rescue pack with both antibiotics and steroids, why are the GPs overturning that instruction?
I still have a repeat prescription with both antibiotics and steroids (I have asthma and mild bronchiecstasis), and last used them a few months ago. I would certainly oppose any change of policy at my surgery if they refused to renew. It seems very short-sighted as there is a genuine need to act quickly when we get an infection or exacerbation.
I strongly opposed when my surgery introduced this but was told this is now the policy of the practice and there was nothing I could do. Luckily I havent needed antibiotics recently x
hi bubba 39 l have just had a course of antibiotics and steriods due to having a chest infection from the gps ....l had mouth thrush and other problems with the steriods so l can now understand why some practices are not giving them ....antibiotics should be suffient in most cases but yes l agree not always in others
Hi Bubba39🙂About 3 months ago my Gp took away my steroid inhaler and replaced it with none steroid things.
I've been degrading ever since coughing choking until I'm nearly sick. Phlegm in cups full 😝.
I truly hope you get ur answers and replacement..
Good luck Bubba39🙂 hugs 🤗Dawn
I would go back to your gp and tell them that this inhaler isnt suitable for you and insist on going back to the inhaler that was working x
My asthma nurse wants to change my preventer too, I know combined inhalers don’t suit me …so far I managed to keep my old one .
I had been seriously unwell with a chest infection in April and finished a rescue pack. I had my rescue pack of antibiotics and prednisolone prescribed last week so it is now with me if needed. I always phone and request a rescue pack and they always allow me to have one on standby. Shropshire, Telford and Wrekin Clinical Commissioning Group have published a succinct summary of the NICE and related guidelines in the following link:
shropshiretelfordandwrekinc...
You can use these guidelines to argue a case for a rescue pack. I hope this helps someone. Keep well everyone xxxxxx
Thanks so much for sending this link. It is likely to help many "bronchies" whose surgeries still just don't get it! xxx
You are very welcome 
I too am not allowed a rescue pack anymore with the surgery citing the close proximity of 3 urgent care centres in my local area. Even when I have been having an exacerbation, they are still reluctant to give me oral steroids. Is there something they are not telling us?????
Probably money. Docs used to pride themselves on making clinical decisions, it now seems finance comes into it as well.
Absolutely it does. Huge underfunding NHS including Primary Care by Government. Let's hope General Election not too far off. 🌺🌺🌺🌹x
yes …..been A and E twice , gp , 3 nurses, phone calls …..no 5 mg steroids given.
I take 3 mg pred daily , been reduced from 5 mg last year . But no scrip due yet so can’t order more 1 mg for weeks.
been taking them 30 years , now suddenly told they are dangerous . Can’t have any 5 mg .
So breathless , panic attacks . Remembering asthma attacks I had in past when I have collapsed . All memories flooding back .
So searched all my cupboards and drawers ….found a few 5 mg lurking . Took 2 each day few days …..symptoms improving . Scared it will happen again.
I know after all this time I have to balance reliever and preventer ….too much preventer and my chest gets worse . Nightmare . More upset I get , more breathing deteriorates
I googled ….seems to be a shortage in some places , same with Salbutamol 2.5 nebules ….manufacturing problem . Covid too.
I contacted ALUK , they were very helpful , sent me advice .
Now you tubing the Buteyko breathing exercises I used to do years ago , hoping they will help my asthma .
I don’t have a rescue pack anymore Not got a few years though I feel one of the younger doctors may give me one if I ask. X
Hi Bubba, hubby has several lung problems including bronchiectasis and asthma. His consultant many years ago prescribed Doxycycline and steroids as a rescue pack and we have have a supply of sputum pots and the necessary paperwork for the path lab. Fortunately the practice follow what the consultant advised as one GP said 'they are the experts about your lungs'. As hubby also has rheumatoid arthritis he is permanently on steroids and we think this helps keep the inflammation down on his lungs. As we have been with GP practice for 40+ years and the GPs 'know' Clifford they are happy for him to use the Doxycycline rescue pack when he feels he needed to. Fortunately has not needed to for some time. Having said that he always does a sputum sample which I take to the local hospital (a couple of miles away and as the path lab works at the weekend I can always the drop samples in at any time during the day)before starting the Doxy; just in case its not the usual culprit, Haemophilus influenzae causing the problem, but he starts the Doxy as soon as he has done the sample. It seems to me from reading the replies that it really does depend on the practice, ours is pretty good they actually listen to the patient and contact the consultant for further advice if needed.
I have Bronchiectasis and Asthma. Needed new rescue pack, could only see a Paramedic at surgery (???). He informed me Steroids would be no problem but I couldn't have Anti's! Quoted nice guidelines etc but got nowhere. Went home, used e-consult and Dr. issued prescription. Now, I'm not making any accusations of a***s and elbows but .... *Anyway, I was told by Dr that if you have Asthma too, they WILL issue steroids but not if its just Bronchiectasis.
I have Copd and Asthma,they stopped my steroids,just gave me antibiotics,I have my doubts about them working without the steroids.
Absolutely! I've only once had anti's WITHOUT steroids, issued by the Hospital of all things!!! And I went downhill really quickly!
What is in a rescue pack
certainly seems par for the course now that gps see fit to change treatment details without consultation only for patients to discover the change when meds are required. I find this to be totally unacceptable, only happened to me once and once was enough to teach me to source my own rescue meds and never ever to be without them.
my consultant took me off steroids he said they aren’t good for you long term he gave me a nebuliser to take home & I have to say I’ve had fewer flare ups since this changed in September last year I’ve only had 1 flare up which is amazingly good for me
It does indeed x
Hi Bubba39, I am on Doxycycline and Prednisolone. No trouble getting steroids. It's part of the emergency pack! I've had the Doxycycline increased from 7 days to 14 .. and Prednisolone on a weening off .. 5 days of 8 .. then 7 .. 6 .. 5 .. 4 .. 3 .. 2 .. 1.I too live in Cornwall .. and have no issues! Best of luck 👍🏻 x
Thank you.x
Sorry to hear things have changed in relation to your rescue pack. I have card that I take to the chemist and they replace my rescue pack. Its allows me to use it 6 times before the card is renewed. Thats greater Glasgow and Clyde health board. Things seem very different across the uk
That sounds like excellent service!
I have both on repeat! xx
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