NO ANTIBIOTICS IN RESCUE PACK? - Lung Conditions C...

Lung Conditions Community Forum

52,677 members63,620 posts

NO ANTIBIOTICS IN RESCUE PACK?

lilypickle1 profile image
76 Replies

could I ask for some advice please? Ive got late onset Asthma and Bronchiectasis. I've been to the doctors but saw a paramedic.?! (Your guess is as good as mine) I requested a new rescue pack specifically containing steroids as I have been refused these in the past and only been given antibiotics, which has resulted in me going downhill VERY quickly! To my complete surprise, I was told "yes, you can have the steroids but you CANNOT have antibiotics"! I asked if this was NICE guidelines and was told yes. this goes against everything we've been told before which was " start your rescue pack IMMEDIATELY, get a sample in and THEN we may need to change your antibiotics but it's very important to start taking some antibiotics." If I realise it is actually an infection on a Friday evening, I'd have to wait until Monday to get a sample in, tuesday to get results back and be issued with a prescription,if I'm lucky! Have I missed something?

76 Replies
Bevvy profile image
Bevvy

I have had a rescue pack for years and yes it is ANTIBIOTICS and steroids. In fact as you rightly point out usually people have difficulty getting steroids for their pack not antibiotics! I would be complaining about this. My surgery has a pharmacist as part of staff and would contact him in the first place about it.

lilypickle1 profile image
lilypickle1 in reply to Bevvy

thank you for replying. Yes, it's supposed to be both - antis for infection and steroids for inflammation. I'm certainly going to look further into it!

Geoffu profile image
Geoffu in reply to Bevvy

Hi, Take action on this urgently.

I have a form of asbestosis, pleural thickening, and take a rescue pack if I feel a chest infection coming on. It contains antibiotics and steroids. A year ago I requested a pack, and my surgery failed to respond despite daily reminders, as they were undergoing a restructure. In the end my wife drove me to A&E. I was triaged and kept in, on a trolley for almost 48 hours before a bed became available. During an eleven day stay I received excellent care, but the damage had been done; the infection had caused heart damage and I now have atrial fibrillation which makes me susceptible to stroke. My life has gone rapidly downhill. A proper response from my GP surgery would have avoided this.

Don’t be frightened to out pressure on them to treat you properly!

Geoff

Bevvy profile image
Bevvy in reply to Geoffu

Thanks but I think this reply is for lilypickle1 who is have issues with rescue pack. I have no issues with my rescue pack.

Sorry to hear what happened to you and your current situation. I hope you put in a complaint although sadly the damage has been done.

Littlepom profile image
Littlepom

oh dear why do we have to deal with these idiots who don't bother to read relevent guidelines! Yes, steroids for your asthma. If they read the bronch guidelines you need to keep antibiotics to take as soon as an exacerbation raises its head. It is obviously too much like hard work for them to read both guidelines! Point them in the right direction and make suggestions that denying guideline treatment is dereliction of duty. Good luck.

lilypickle1 profile image
lilypickle1 in reply to Littlepom

thank you for replying. Yes, I just wasn't sure if it was because maybe, the paramedic didn't fully understand an exacerbation affects both conditions? As I've had antibiotic rescue packs previously, I'd like to think they'd be hard-pushed to deny me now! I do like your suggestion of intimating they may not be doing their job properly!

O2Trees profile image
O2Trees

Yes, always both !!

lilypickle1 profile image
lilypickle1 in reply to O2Trees

thank you for replying. Yes, I've always been led to believe that. I've certainly been prescribed both when I have an exacerbation, except only once, the hospital only gave me antis and within a week I was back at the emergency dept. Because I'd gone really downhill. That was very frightening!

O2Trees profile image
O2Trees in reply to lilypickle1

I read Davegt's Reuters article with interest. I think it means that you cant just have an emergency pack on demand but have to arrange it with your doctor. But your doctor should definitely agree given how often we need medication out of hours, and the difficulties in getting GP appointments. It is frightening when you know you need them but dont have them and cant get hold of them. Deterioration can happen so quickly.

Patk1 profile image
Patk1

ring 111 as u want to get thm started asap and at least 14days antibiotics with bronchiectasis.dont delay - irreparable damage is the cost of delaying.get well soon x

lilypickle1 profile image
lilypickle1 in reply to Patk1

thank you for replying and for being concerned but thankfully, I don't have an infection right now, I was just requesting a new rescue pack. You're absolutely right tho' 'irreparable damage is the result of delay,' that's how I came to be in this position - nearly 4yrs of being fobbed off, untreated, undiagnosed, made to feel like a hypochondriac, given x-rays and told my lungs are perfectly clear, when I knew damn fine there was something wrong with me! Sorry, it just makes me feel a bit overwhelmed when I think back to that time.

Patk1 profile image
Patk1 in reply to lilypickle1

im glad u have diagnosis now x

Patk1 profile image
Patk1 in reply to lilypickle1

ps id ring asthma/respiratory nurse at gp surgery + request rescue antibiotics.the info to start asap is correct.if u get no joy,contact consultants secretary + request they write to gp again.the paramedic obvs ill informed 🙁

Cloudancer profile image
Cloudancer

my local surgury no longer gives antibiotics in rescue pack.

I understood it was new guidelines(or was I being fobbed off I wonder)

Davegt profile image
Davegt in reply to Cloudancer

reuters.com/article/uk-fact...

Cloudancer profile image
Cloudancer in reply to Davegt

Thank you -have read that link bless you.Up until the pandemic I always got a rescue pack(am on long term prednisolone anyway) plus antibiotics.Recently the surgury stopped the antibiotics given in the rescue pack +which I quite understand in the light of antibiotic resistance.

However it's a nightmare getting through to our surgury ,explaining the issue( next available appt is first week of November) and getting sorted by which time the lungs are hosting a mammoth bug fest!

Stay safe and well and thank you for the link.



Davegt profile image
Davegt in reply to Cloudancer

Sorry I didn't put any comment with the link. I was taking my little dog for his shampoo and didn't want to be late.

Getting appointments at GP surgery is very difficult. The other day I was 8th in the queue and 16 minutes later I was still 7th. I gave up and eventually got through the next day. I am going for a COPD review.

I think it is hit and miss with getting antibiotics although the guidance is that they should not be given automatically. I believe the correct procedure should be to test a sputum sample to establish whether bacterial or viral infection. Antibiotics are of no use with viral infection. I believe GP's have been instructed to only give antibiotics where necessary to try to stem antibiotic resistance which is now quite serious.

Anyway i am glad the link was of benefit.

Take care 👍😄

lilypickle1 profile image
lilypickle1 in reply to Davegt

thank you for replying. I've read the link. Even the NICE guidelines state that 'however, empirical antibiotics can be started WHILE AWAITING sputum results'. They're basically saying that it's important to start ANY antibiotic treatment in the early stage. I was told to start my rescue pack, try and get a sample in and THEN, we may need to change your antibiotics. To be fair, it shouldn't be THEIR decision to indulge in a blanket refusal of OUR medication.

Davegt profile image
Davegt in reply to lilypickle1

HI lilypickle1. Sadly this is a double edged sword. On one hand we certainly do not want people to suffer unnecessarily with lung infections. However we must be aware than antibiotics are becoming less and less effective as time passes. Bacteria are mutating to mean, with some bacterial infections, antibiotics no longer work. Therefore it becomes imperative that we try to avoid further bacteria becoming resistant to antibiotics.

Over time more conditions could become untreatable with antibiotics meaning patients could die.

This is very difficult situation for doctors to decide. Do I prescribe antibiotics when it may be a viral infection, for which antibiotics are of no help. Do I ask the patient to wait until we are sure following a sputum test. That delay could cause serious problems for the patient. Or do I prescribe antibiotics now, knowing my action could contribute to bacterial resistance, meaning less conditions being treatable in the future.

I could not get annoyed with a GP in this dilemma.

😱🙏

lilypickle1 profile image
lilypickle1 in reply to Cloudancer

thank you for replying. You do right to wonder tho'! Have they read the guidelines thoroughly? I mean, it's hardly a great cost cutting exercise to deny one pack of antibiotics. It makes you feel impotent tho' as if I'm obviously not capable of knowing when I can't breathe properly, silly old me!

mylungshateme profile image
mylungshateme

so I'm still trying to find the latest robust guidelines.

But I know there has been talk that

a, rescue packs are not cost effective

, b, patient isn't educated enough by practitioner or monitored enough to safely and accurately use them.

c, can delay urgent treatment

d, over use of abx and risk. And practitioners being adviced to stop using pred so freely due to new research re risk to patient. It also seems as per bit of post code lottery each CCG does their own thing and wonder why we feel upset an frustrated 😆😔

lilypickle1 profile image
lilypickle1 in reply to mylungshateme

thank you for replying. They love to throw that one at us don't they, 'overuse of anti's', as if we're all just deliberately trying to bring an end to humanity with our constant need for antibiotics! How very dare we! More cost effective to have a little packet of tablets than be taken into hospital.

Lfcpremier profile image
Lfcpremier

I think that is the recommended course of action for bronchiectasis... Antibiotics quickly.

However, I have bronchiectasis & when I'll ive it 48hrs to see if I improve on advice from my consultant. Seems I get viruses as opposed to infections & as I don't tolerate antibiotics well am loathe to take them

May be different for you with Asthma. Any concerns get in touch with 111.

Good luck!

lilypickle1 profile image
lilypickle1 in reply to Lfcpremier

thank you for replying. Yes, it's anti's for bronchiectasis but steroids (I think) when asthma is involved. The steroids help bring down the inflammation. Both together work very well for me. Sorry to hear you can't take them.

Nula2 profile image
Nula2

Hi lily, I have bronchiectasis and asthma (and aspergillosis). My surgery gave me steroids for my rescue pack but wouldn't give me antibiotics, which for me is more important. In the end I asked my bronchiectasis specialist and he issued me antibiotics and did not understand why my surgery wouldn't. I wonder if it's because they don't know enough about bronch.

lilypickle1 profile image
lilypickle1 in reply to Nula2

thank you for replying. I hope your consultant writes to your surgery and requests you be given them in future? Hmm, I may contact mine tomorrow and say I've been refused medication. He's normally pretty good and will use his authority to put them in their place if needs be.

Nula2 profile image
Nula2 in reply to lilypickle1

Good luck lilypickle, hopefully you'll get what you need 🤞🙂xxx

Izb1 profile image
Izb1

My gp surgery no longer issues rescue packs, they are only for severe copd patients. It doesnt matter how much info I gave them they will not budge. They will not issue 2 weeks antibiotics now either and I have to get back in touch if I feel no better. I wish my gp would come back from matenity leave as she is the only one that understands me x

lilypickle1 profile image
lilypickle1 in reply to Izb1

thank you for replying. That sounds ridiculous and must be extremely frustrating for you! Can you get your consultant on board to perhaps remind them HE is the one treating you and they need to follow his instructions? I do hope it gets resolved for you. You don't need the anxiety and aggravation!

Izb1 profile image
Izb1 in reply to lilypickle1

Thank you lillypickle1 but my consultant discharged me saying there was nothing more he could do for me. I suppose like alot of us lungies we are on our own x

PaulineHM profile image
PaulineHM

It does take time for us to get our heads around keeping well and using a rescue pack. There is a huge move in the NHS to combat anti microbial resistance and this is why we are no longer automatically prescribed antibiotics.

If you try and keep yourself as well as possible that should enhance your immune system, reducing exacerbations. If you know your pattern of exacerbations and symptoms well ( I keep a day to day diary of them ) then it will easier for you to identify when and if you need antibiotics. That works for me in managing antibiotics. I often get through without them.

Would you be prepared to try that ?

Bevvy profile image
Bevvy in reply to PaulineHM

Firstly I think it’s important to say I don’t have bronciectasis but rather COPD/asthma overlap. Your idea seems reasonable and well thought through however it fails to consider individual circumstances. Which is why these general NHS decisions often cause so much upset.

I have a poor history of chest infections. What may start as a harmless cold or even a regular chest infection can suddenly turn into a severe chest infection such as pneumonia or pleurisy. With difficulties getting hold of a gp, or if was bank holiday I need a rescue pack including antibiotics at home. Often I need more than one course of antibiotics and steroids to clear infection - sometimes 2 or 3 with a longer course than usual, when of course gp is contacted. The after affects of infection can then lead to my continued ill health for literally months.

I agree keeping as well as possible is vital but sometimes I haven’t been near anyone unwell. Although my last severe episode I can definitely attribute to being in contact with a sick person in my work place. It is interesting that I have now not had a chest infection since last one started November 2019. I attribute that to less exposure to other people due to Covid and my medical retirement from work. Plus I now am scrupulously cleaning my hands with gel especially before eating.

With regards signs, I believe that most people who have rescue packs are fully aware of signs that they need to use antibiotics. Having said which at my last prescription review I was told I must always take both antibiotics and steroids at same time. On occasion I have felt need for steroids to reduce inflammation in airways but no infection….

As said at top of this quite long response (sorry) I think there needs to be leeway in particular peoples circumstances and blanket “rules” are unfair and unreliable.

PaulineHM profile image
PaulineHM in reply to Bevvy

Thank for your kind words. I perhaps should have made it clear that I don’t have bronchiectasis either, but ACOS-Asthma COPD Overlap Syndrome. I was diagnosed nearly 19 years ago and now require continuous oxygen, so am at the severe end of things, and not immune to serious infections. I work really hard at keeping well.

Have you thought of feeding your thoughts on this back to to your prescriber ?

Every prescribing decision is of course between the patient and prescriber. Perhaps when personalised care comes in then ABs in a care plan will be able to be negotiated ?

Good wishes,

Pauline

Bevvy profile image
Bevvy in reply to PaulineHM

Thanks but I don’t need to speak to my GPs. Not only do I have both steroids and antibiotics in my rescue pack I also have nebules for my nebuliser- another minefield as to who gets prescribed and who doesn’t. I was speaking up for those on the forum like the original poster lilypickle1 who can’t get antibiotics for rescue pack.

PaulineHM profile image
PaulineHM in reply to Bevvy

Wishing you well.

lilypickle1 profile image
lilypickle1 in reply to PaulineHM

it must be doubly worrying for you, being on oxygen, when you do get an infection. I'm sorry to hear that.

PaulineHM profile image
PaulineHM in reply to lilypickle1

Good morning, hope you are well this morning. Actually using oxygen makes it easier for me to keep doing all those things which help to keep me fit, exercises classes, walking and yoga so it isn’t all bad news. On oxygen I have less fatigued too so I can continue with much of my normal ( a bit slower these days ) life.

Have a great day.

Pauline

Lol1944 profile image
Lol1944 in reply to Bevvy

agree with you. If I had not had both antibiotics and steroids at home I seriously believe I would not still be here. A failure to quickly jump onto an exacerbation can cause further lung damage.

lilypickle1 profile image
lilypickle1 in reply to Lol1944

thank you for replying. Thank goodness you had them and knew your own body enough to know to start taking them. And that's it; by and large, we're not stupid people. We've made it this far in life, you can trust us with a packet of pills!

lilypickle1 profile image
lilypickle1 in reply to Bevvy

thank you for replying. Well you've hit the nail on the head exactly! It is blanket decisions being made, a 'one size fits all' that is causing stress and anxiety to people who are already struggling with health issues! We don't want to have to fight with our g.p's - we want them on our side. instead of checking a textbook and thinking 'this is how we treat blah blah' actually look at us and assess 'is THIS what's best for THAT individual?' Great to hear you've gone this long without a chest infection!

lilypickle1 profile image
lilypickle1 in reply to PaulineHM

thank you for replying. Unfortunately, keeping myself well doesnt stop me from having an exacerbation. Thats like asking 'thoughts and prayers to do the job of medication. At those times I need both antibiotics and steroids or I get even more seriously unwell. You are very lucky that you can somehow manage without them, I do envy you!

PaulineHM profile image
PaulineHM in reply to lilypickle1

Hi, it can be tricky can’t it? I don’t always manage not to exacerbate.

Although I have ACOS ( Asthma COPD Overlap ) I do work really hard, as I expect you do too, at keeping as well as possible.

I understand the new Minister of Health has said that soon people will be able to buy antibiotics from the pharmacy ? Perhaps that will help ?

I hope you are able to keep well through the coming winter.

Good wishes,

Pauline

Alberta56 profile image
Alberta56

OMG. Have they not worked out that leaving you at risk of a severe exacerbation and possibly hospitalisation is going to cost the NHS a lot more than dishing out a slide of antibiotics. Good luck in getting what you need.

lilypickle1 profile image
lilypickle1 in reply to Alberta56

thank you for replying. Well exactly! And who seriously, wants to be in a hospitable when we could start our own treatment, have it confirmed by our g.p. and continue on our merry way to good health, safely tucked away at home? No drama.

mauschen profile image
mauschen in reply to lilypickle1

if you need to go to hospital with an infection, you will pass it around to staff and patients in the waiting room! Who is making these crazy decisions?

My niece has Bronchiectasis and I have seen how quickly she becomes very unwell. Try writing to your health board. It’s obviously more efficient for you and cost effective to have you treat yourself and prevent spread of infection.

Hope you get this sorted out, the NHS is in self destruct mode.

gingermusic profile image
gingermusic

Most definitely both steroids and antibiotic in a rescue pack.

lilypickle1 profile image
lilypickle1 in reply to gingermusic

thank you for replying. And thank you for the confirmation; steroids AND antibiotics! Used in tandem they work very well. I don't know why they have to make it difficult for us.

panthor profile image
panthor

Hi PaulineHM,

I am so glad that works for you for your condition and the level of your condition.

Unfortunately everybody is different with an array of conditions at differing levels to others.

This means the plan that works for you is not a plan for all and I'm sure the medically trained people who came up with the NICE guidelines will have more knowledge on all these conditions than merely me, you.and other mere mortals.

I am sure everyone is trying their best to live their best life as infections and feeling bad are definitely not the choice of life, unfortunatley though it is part and parcel for me of having bronchiectasis and small airways disease.

For myself I walk every day, go to the gym once a week, take vitamins and supplements and eat healthy. However I still have chest infections roughly every 3-4 months where antibiotics are required, I do hold off as long as I can but have had two bouts where hospitalisation has been needed through doing this.

So it is nice your plan works for you and interesting to hear your story. Thanks.

PaulineHM profile image
PaulineHM in reply to panthor

Thank for your kind words. I perhaps should have made it clear that I don’t have bronchiectasis either, but ACOS-Asthma COPD Overlap Syndrome. I was diagnosed nearly 19 years ago and now require continuous oxygen, so am at the severe end of things, and not immune to serious infections. I work really hard at keeping well.

I love your self management plan, that is the way to go isn’t it ?

Every prescribing decision is of course between the patient and prescriber.

Perhaps when personalised care comes in then ABs in a care plan will be able to be negotiated ?

Keep well

Good wishes,

Pauline

panthor profile image
panthor in reply to PaulineHM

Hi PalineHM,

I'm sorry to hear you are at the serious stages of your diseases. I'm sure you are doing the best you can.

My Uncle has pulmonary fibrosis and doesn't even have a rescue pack of anything, he seems to get passed from pillar to post repetitively with no treatment forthcoming at the moment. So it's strange how different diseases are treated by various consultants and doctors.

Wish you well.

PaulineHM profile image
PaulineHM in reply to panthor

Hello Panthor, thanks for your kind message, Despite being a bit limited by my condition now the quality of my life is good.

Sorry to hear about your uncle and PF, it isn’t a very nice condition is it? Has he been in touch for support from the pulmonaryfibrosistrust.org/. If he hasn’t he might find it helpful as they specialise in that condition ( obviously !) 😅

Good wishes, be well.

Pauline

panthor profile image
panthor in reply to PaulineHM

Hi PaulineHM,

I'm so glad you have a good quality of life and thankyou for the link, I'll make sure to pass it on to him.

Best Wishes and wellness.

lilypickle1 profile image
lilypickle1 in reply to panthor

im sorry to hear about your uncle. I hope he gets the right consultant and the right treatment for his condition. Once I got a consultant and under the umbrella care of hospitals lung department and no longer at the mercy of g.p's apathy and irreverence, it really made a difference for me. I felt 'taken care of'.

panthor profile image
panthor in reply to lilypickle1

H lilypickle, Thanks, he is under a consultant who just seems to have been sending him round in circles with respiratory tests he could't do due to his breathlessnes. His doctor sent the consultant a wisely worded letter and he is now going through more different tests and scans but with a bit more haste and purpose. Hopefully this time they will give him something to help.

Nula2 profile image
Nula2 in reply to panthor

Hi Panthor, I have bronchiectasis and like you try to eat healthily and move as much as I can. Hope you don't mind me asking but what vitamins and supplements do you take? Only ask in case I felt they would help me too. No problem if you'd rather not say. Take care xxxx

panthor profile image
panthor in reply to Nula2

Hi Nula2, I just take multi-vitamins and high dose vitamin D daily with the occasional vitamin C when feeling a bit off it. I read somewhere that high strength Vitamin D (1000 IU) is one of the essential vitamins for helping with bronchiectasis.

Hope this helps. Keep well yourself xx.

Nula2 profile image
Nula2 in reply to panthor

Hi Panthor, Thank you for replying 🙂. I take vit D too, I was recommended to take it by my consultant. Also omega 3 and like you take vitamin C if feel I the need. Take care xx

lilypickle1 profile image
lilypickle1 in reply to Nula2

i take cod liver oil, vitamin c, vitamin d, complex b vitamins and ferrous fumarate (iron) for anaemia. I think I may try a high dose vitamin d; I didn't know it is recommended for bronchiectasis? Worth a try.

lilypickle1 profile image
lilypickle1 in reply to panthor

thank you for replying. Oh good grief, an infection every 3 to 4 months? You're no sooner getting over one than you're having to deal with another, you must be exhausted! You won't want to be in hospital, no-one does, and you certainly don't want anyone trying to deny you antibiotics because of 'overuse'. For heavens' sake, what exactly is the alternative? So sorry to hear you have to go through this.

panthor profile image
panthor in reply to lilypickle1

Thanks lilypickle1, It's just become a way of life that I am used to now. I did have a consultant who was monitoring me every 6 months or so. However, even though they were telephone appointments, the last one was cancelled and so far no sign of the next. So I've not had a telephone consultation since late last year and now just waiting to discuss it all with him.

jackdup profile image
jackdup

I always get both and the way it has been explained to me is the steroid essentially turns down your immune system which in turn reduces the inflammation and the antibiotics helps protect you from an infection while your immune system is not functioning normally due to the steroids.

lilypickle1 profile image
lilypickle1 in reply to jackdup

thank you for replying. Ooh that makes sense.I had it explained once but can't really remember. I thought the steroids built you up because the antibiotics leave you vulnerable.

Lutontown profile image
Lutontown

Personally, I don't think there is much point in having AB's at the ready as Doxycycline or Amoxacillin may not sort the bug that's collonised your lungs. You must have sputum pots in stock so that when you think you have a chest infection you can put in a sample and get it tested and the right antibiotic is prescribed. (I believe you know your own body better than your doctors and know when something's up) .This can take up to 10 days I have found. Might be an intravenous AB you may need. If you take either of those broad spectrum AB's and they don't work you are giving the bug more time to become immune. I believe a long bout of Staphylloccus Aureus I had in 2014, being prescribed oral AB's, caused my Bi-basal Bronchiectasis. IV AB sorted it in the end after eventually a referral to the lung consultant at the hospital, and a scan showed it up. In 2016 I had loads of chest infections, so in 2017 I kept a diary and counted 18 chest infections. In 2018 got rid of Black Mould on our bathroom floor, and apart from a 10 day stay in hospital with pneumonia and pleurisy, I have had no chest infections. Some people get on with taking an AB, Azithromycin, 3 days a week, but it gave me terrible mouth ulcers when I tried that.

welllaners profile image
welllaners

I think a lot depends on your relationship between you and your doctor and respiratory nurse etc. Being able to talk and them to listen is half the battle, I always make notes about the questions I want to ask, as I always seem to forget some points. My doctor is old school and takes time to listen. Rescue packs seem to be at their discretion.

Tykelady profile image
Tykelady

Prescriptions for my last two rescue packs came straight from the surgery pharmacist with no questions asked and no doctor consulted. At my last flare up however, I was told that I should start the steroids at the first sign and wait and see with the Amoxycillin.

adenough profile image
adenough

hello, don’t worry, my steroids were forgotten in my latest rescue package, so best get in touch to remind them as I have done.. all the best to you xx

Karenanne61 profile image
Karenanne61

It does state "unless previously prescribed as part of an agreement management plan." so I'm hoping those of us who already have a rescue pack prescribed can continue and those newly diagnosed can have the pack prescribed if appropriate.

arcangel17 profile image
arcangel17

Hi lilypickle1

im in Glasgow Scotland and having the same problem spoke with respiratory consultant on Friday for 6 months check told him about the problems I was having and I'm sometimes left 6vdsys without by time I get to speak with a GP then get prescription then chemist picks it up from health center they then send it to England to be made up and then to top it off if I've ordered my morphine and it's out of stock they send me NOTHING till everything is in stock so like you I've become very I'll and ended up at A.& E Dr Carlin phoned health center on my behalf who then phoned the chemist low and behold I received all my medicine this morning just out of order and unacceptable taking up hospital beds when it could be avoided especially when hospital say oh why did you leave it so long to see someone Aarrhh

GintyFerguson profile image
GintyFerguson

This is scary if guidance has changed. I'm in Scotland. I am the same as you...late onset asthma followed by bronchiectasis. I prefer not to take pred although I have some available. I always have rescue abs although not required any for two years having locked myself away! My consultant and GP have always recommended starting abs, doxycycline in my case, after submitting a sputum sample and then they let me know if a different ab is indicated. When I have been ill in the past and put off taking abs I go down hill fast. I need to see this guidance! Hope you find a way through this. Just be persistent. Good luck.

alcgb profile image
alcgb

Everyone who has COPD is entitled to a rescue pack containing steroids & a broad spectrum antibiotic. You can insist on this, either via your GP or your respiratory consultant. It is not safe not to have these at home, nor is it safe to have to be admitted to hospital with the risk of Covid & all sorts of other community acquired respiratory pathogens. I’m afraid that (and I have learnt through experience) that you have to be forthright these days or you get nowhere.

Catsncrochet profile image
Catsncrochet

Absolutely, especially with bronchiectasis. I have Co-Amoxiclav and gastro-resist prednisolone on my repeat prescriptions list. I wonder if it's more to do with the qualification of the person prescribing. With the risks of giving inappropriate antibiotics to people with allergies, they may need a doctor to check.

I've even had a GP tell me they'd never give steroids without antibiotics to someone with bronchiectasis, like me.

Insist on seeing a doctor and get an asthma plan from them, specifying what you should take and when. Good luck!

syntax profile image
syntax

That is why l built up a store before all of this started.I could see this and many other things happening to put us down !!!!

MoyB profile image
MoyB

I don't think a paramedic would necessarily be sufficiently qualified to decide if you should or should not have the antibiotics in your rescue pack.

I had to see a paramedic at our surgery. On my way to see her, I dropped off a sputum sample at reception. When I told her I'd done that, she asked me why! I told her it is standard practice for patients who have Bronchiectasis to take in a sputum sample for testing when they have an exaccerbation, especially if there is a change in the sputum colour. She looked totally baffled.

The sputum sample confirmed that I had a bacterial infection. Thankfully, I had started my rescue pack (against the paramedic's advice). I knew very well that I needed to and so I made my own decision as I was convinced that although she was very well intentioned, the young lady in question knew diddly squat about Bronchiectasis.

Ask to speak to your GP and don't take no for an answer! Paramedics are very skilled, but their range of knowledge must be more limited than your GPs or else that's surely what they would be! xx Moy

Haven’t read all the replies so apologies if doubling up, but just to point out that bronchiectasis (ncfb) is managed very differently to copd: the Reuters article you were linked to only mentioned with reference to asthma and copd, not ncfb, and was from a standpoint of covid considerations rather than general management. That said, many bronchiectasis patients with ‘just’ bronchiectasis are only supplied antibiotics to keep at home, not steroids, as steroids are only considered appropriate for those with clinical grounds to need them, such as a steroid responsive comorbidity like asthma or some types of copd. My understanding is that ncfb in isolation rarely responds to steroids. As you have asthma, the steroids would be appropriate in your case, but as with cystic fibrosis (where bronchiectasis is a common feature), antibiotics are the normal mainstay of managing the bronch side of things. Many GPs don’t have the first clue about appropriate management and often try to treat it the same as copd, so a paramedic triaging would be likely to have even less idea of what constitutes appropriate care for ncfb.

Bottom line? If you have a respiratory consultant, I’d bypass the middleman and speak directly to them. If they want you to have access to antibiotics at home, they can advise the GP of that in writing. And then you can just refer whoever you speak to at the surgery to the letter stating that going forward.

Active60 profile image
Active60

I don't know what NICE guidance was being referred to. My consultant has been very clear with my GP - at any suspicion of an infection, I do a sputum sample then start my rescue pack of 10 days a/b and steroids. I have bronchiectasis and asthma so need both! I get excellent care from my GP who always provides a new rescue pack and I am able to contact a specialist respiratory team attached to Addenbrookes who will advise me and visit to examine me if necessary saving hours of GP time and emergency admission to hospital. Sorry that you've had such a bad experience.

Aishahb5364 profile image
Aishahb5364

cks.nice.org.uk/topics/chro...

Offer a short course of oral corticosteroids and a short course of oral antibiotics to keep at home as part of the person’s exacerbation action plan if they:Have had an exacerbation within the last year, and remain at risk of exacerbations.Understand and are confident about when and how to take the medication, and are aware of associated risks and benefits.Know to when to seek help and when to ask for replacements once medication has been used.For people who have used 3 or more courses of oral corticosteroids and/or oral antibiotics in the last year, investigate the possible reasons for this — consider alternative causes.Review the person’s self-management plan.

You may also like...