Rescue packs: I was wondering if anyone... - Lung Conditions C...

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Rescue packs

Souielouie profile image
60 Replies

I was wondering if anyone else has been refused a rescue pack by their surgery ? My surgery now has a new policy in that they do not issue rescue packs because patients are taking Antibiotics when there not needed & will end up being immune.Recently I started another chest infection, I had to ring the surgery to get an appointment with a doctor, I had a phone appointment, short story it took 3 days to finally get the antibiotics & by which time I was really poorly.

I spoke to my Consultant 's Secretary & explained the situation, she rang my surgery & spoke to a Doctor, who explained their new policy.

I've got an appointment with my Consultant tomorrow & see if he can help me.

I am really upset by this, I only take meds when I really need to !!!

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Souielouie profile image
Souielouie
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60 Replies
beech profile image
beech

That seems to me to be a ridiculously short sighted approach. People like us with dodgy lungs tend to brew infections far more easily than the average healthy lunged person, and need antibiotics more often than not to clear the infection.

You tend to become used to feeling the signs that what was a bit of a viral chesty cough has moved into being an infection, and no amount of ‘waiting to see’ will clear that.

By starting treatment quickly it can stop that from becoming a potentially more serious infection needing IV antibiotics and hospital admission - whilst there’s usually a request that you inform the respiratory nurse/ GP of your action.

It may be that there have been some patients at your Surgery who have self-medicated unnecessarily, but perhaps they should be able to have quicker access to medical advice - for yourself being left for several days before commencing antibiotics has been problematic. Prior to having medications to take as needed I’ve left it too long twice and needed hospital treatment, whereas by being able to initiate antibiotic treatment myself no further medical treatment has been needed for four years now.

I’d be interested to hear what your Consultant says.

Vvalerie profile image
Vvalerie in reply tobeech

wow how sad to hear any Gp say no rescue pack, hope you will able to receive your rescue packs from your consultant he should be able to help you with this situation. Insisting on a Gp to visit you at home he should be able to send any prescriptions to your local chemist & providing your register with chemist they may deliver to your home OR look for another GP surgery to change Drs. Hope you will soon be sorted out .

peege profile image
peege

I totally commiserate with you, mine refused 3 or so years ago when he was requested to see to it that I have a rescue pack of 2 weeks of abs + steroids, sputum test pots, prophylactiantibiotics in the winter and twice yearly lung reviews. I did at least get a repeat prescription for Azithromycin 250mgs to have on 3 days per week November to April. A neighbour with severe copd - at the same practice - tried to get through to the surgery for 4 days knowing that she had an infection but was impossible, finally she sent an email: URGENT, ANTIBIOTICS NEEDED IMMEDIATELY. She got a call back from someone who told her off for doing it but she did get the abs (knowing her she probablygave them what for) . She was very poorly for over 2 months.

I think its scandalous to be lumped in with every other person regarding the modern system of not doling out abs willy nilly but really, that absolutely doesn't apply to us & most of us are experienced enough to manage our own conditions. Good luck with consultant appointment. P

eleanordigby profile image
eleanordigby

Honestly, I do wonder about the GP professsion at times! For decades they’ve been over-prescribing antibiotics, often for trivial ailments or inappropriately for viruses, resulting in widespread antibiotic resistance (for which, somehow, they blame patients!) Now they’ve gone the other way and won’t give them to anyone if they can possibly avoid it. This might be ok if GP surgeries were open at weekends, but someone with poorly lungs who starts a chest infection on a fri evening can be really ill or even have pneumonia by the time they can get antibiotics. What’s more, it’s impossible to even speak to a GP, and the 111 system is totally useless. Is it any wonder people end up in A&E?

To be honest this attitude makes me sick. It’s putting lung patients at unnecessary risk. If they want to limit antibiotic prescriptions, don’t pick on the one group of people for whom the consequences can be disastrous!

Souielouie profile image
Souielouie in reply toeleanordigby

I agree with everything you’ve said. It makes me feel very vulnerable, having a rescue pack at home gives you confidence & I only ever take meds if I need to.

Thanku for your reply.

eleanordigby profile image
eleanordigby in reply toSouielouie

Exactly! it’s especially stupid to apply this policy to patients who DON’T have a history of over-using antibiotics. Thank goodness you’re seeing the consultant tomorrow!

peege profile image
peege in reply toeleanordigby

Absolutely!

SeasideSusie profile image
SeasideSusie

My surgery doesn't allow rescue packs . I have COPD and Bronchiectasis and asked for a rescue pack a few years ago and was told no, you have to send in a sputum sample and wait for the result so they can prescribe the correct antibiotics. Since being on Azithromycin 3 times a week all year round I dont have the infections like I used to.

Souielouie profile image
Souielouie in reply toSeasideSusie

we now have to speak to a Doctor before sending in a sputum sample as well, so by the time you get the antibiotics the infection is pretty bad.

Pleased to hear that taking Azithromycin 3 times a week has worked for you 🥰

I love your name ❤️

Souielouie profile image
Souielouie in reply toSeasideSusie

we now have to speak to a Doctor before sending in a sputum sample as well, so by the time you get the antibiotics the infection is pretty bad.

Pleased to hear that taking Azithromycin 3 times a week has worked for you 🥰

I love your name ❤️

cofdrop-UK profile image
cofdrop-UK in reply toSeasideSusie

This is going against the guidelines for bronchiectasis. It states that a sample should be sent in and abs commenced. Once the results are back from the lab, depending on the sensitivity the ab should either be continued or a more appropriate ab prescribed.

Xx

Lol1944 profile image
Lol1944

Three days is absolutely ridiculous. It is many years ago that I decided to always have antibiotics at home ready to use. Many gps are part time and we are requested to not visit local hospitals unless nearly at deaths door. Flare ups do not occur to suit gps hours. Spoke to someone only this week who had been refused a rescue pack. My advice us to get to a hospital, tell them why you are there and tell them to advise your gp not to be so bloody minded with a reminder that he has a duty of care to his patient.

Souielouie profile image
Souielouie in reply toLol1944

Thanku for your reply. I’m hoping the Consultant can help when I see him tomorrow.

Karenanne61 profile image
Karenanne61

I had a query about my rescue pack in the summer and my consultant responded that 'rescue packs need to be steroids and antibiotics', and that I should take on holiday a 'standby pack of antibiotics and steroids '. Have things changed? Is it once again the postcode lottery? Are some doctors following guidelines and others not?

Souielouie profile image
Souielouie in reply toKarenanne61

I really don't know, all I know is that since a few weeks ago my surgery has a new policy of not giving rescue packs. So annoying and very sad.

Batman1313 profile image
Batman1313

This is bad.

Aishahb5364 profile image
Aishahb5364

NICE Guide lines state:

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.

GP surgery’s have to follow these guidelines .

I would right to them pointing this out and ask them to justify why they are refusing to do so.

Their policies are against the guidelines set out for them to follow.

Antibiotic resistance is more likely to be caused by use of antibiotics in animals used for the meat industry.

INK45 profile image
INK45 in reply toAishahb5364

I agree with you 100%, this is the complete site with the NHS policy on the rescue pack you quoted from: shropshiretelfordandwrekinc...

teddyd profile image
teddyd

Just in the last few weeks my way of getting my resure pack has changed for what seems the better. Some people may disagree Its a we card/ prescription that allows me to pick up my rescue pack 6 times from the pharmacy. (Sterods and antibiotics) .

Tykelady profile image
Tykelady in reply toteddyd

That sounds useful. I was told at the hospital that as soon as I opened a rescue pack I should request another. I tend to leave using it until I'm sure I need it and am lucky in that I have only needed three this year.

B0xermad profile image
B0xermad

My rescue pack has just been increased by my consultant as was only being given 5 day course and she's requested that they will send me 14days from now on but not sure how that will go down as they quote budgets a lot at my gp surgery

Souielouie profile image
Souielouie in reply toB0xermad

I hope you get the 14 day supply, that is what is required for us with Bronch. Thanku for your reply BOxermad 🥰

Lucylungs profile image
Lucylungs

I have always had an issue with rescue meds, it is really dangerous. I have actually had respiratory failure 3 times and been in hospital once a month, but still gp insists on a phone appointment for steroids and antibiotics. I know how you feel.

Souielouie profile image
Souielouie in reply toLucylungs

Thanku for your reply Lucylungs, the fight goes on, there must be exceptions to the rule. Take care kindest regards Sue 🥰

frose profile image
frose

Hmm I'm just hoping this isn't why my surgery rang asking how many exacerbations I've had this year. I honestly replied "none" but went on to say that is because, amongst other factors, I start ABs the moment I become unwell. The receptionist replied that all she needed to know was how many exacerbations! I'm afraid, GP Surgery, life is not as simple as that!

Souielouie profile image
Souielouie in reply tofrose

your right life isn’t that simple, we don’t fit into boxes we are unique, thanku for your reply Frose 🥰

gingermusic profile image
gingermusic

I think that is pretty awful and hope you get it sorted really soon.

Souielouie profile image
Souielouie in reply togingermusic

Thanku Gingermusic fingers crossed 🥰

watergazer profile image
watergazer

when I changed to another practice because of where we live , the new dr refused to give me a rescue pack when asked by my chemist who gets the prescriptions. I was told by the Dr that he needs to see me to prescribe antibiotics and that was years ago. Like you I only take them when necessary. There are good practices around who will prescribe rescue packs but I do blame the cutbacks from the government and I suppose there’s a lot of wastage along the line. Take care. Last time I needed them I went on the GP messenger and stated bronchiectasis flare up antibiotics are required for 2 weeks. I got a a face to face within the hour. Xx

Izb1 profile image
Izb1

My gp have had this policy for some time and it took me a week to get ab's last time. Its not just people taking ab's when they dont need them but some are getting outdated as they are not needed so considered a waste. We need to develop a system whereby if you need them they can be issued without delay on the same day x

woodcarver999 profile image
woodcarver999

I had the same situation two weeks ago. I hadn't renewed my emergency pack since before Covid and asked (left a message on answerphone) the respiritory nurses how to go about it. Without my knowledge they contacted my GP surgery who called me in. I had a protracted argument with a GP about this who eventually conceded that the Respiritory Consultant may have more knowledge of the subject than her. I got my pack.

The GP surgeries are being run like a monopolistic business and we have difficulty getting what we need if it costs them money, or so it seems.

Otto11 profile image
Otto11

I think it’s down to individual GP practise’s & budgets. There seems to be a crackdown on meds in particular lately. I had to fight to get a rescue pack on my repeat but I do have it now although only 7 days worth & no steroids. I was told they are only for patients with COPD. I think it’s ridiculous that they are refusing to let you have one. Let’s hope your Consultant can rectify things tomorrow for you. I put in a complaint with our practise manager prior to getting this in place as I had an infection & no antibiotics on my repeat & they refused to see me until I had a negative PCR. I told them LFT was negative but they still refused so it took 5 days before I was seen by which time I was really unwell. This was during Covid lockdown so hopefully shouldn’t happen again. I now have a note on my record to say they will examine me in the car park! I wouldn’t fancy that in this weather! Hope all goes well tomorrow. Oh interestingly they have swapped my Salbutamol inhaler to a Salumol or similar. This was a text message I received last week. Again a money saving exercise. X

Alberta56 profile image
Alberta56 in reply toOtto11

If the Salumol doesn't suit you, get back to them. The propellant on some Salumols is not as good as on Ventolin so you don't get enough of the medication.

Otto11 profile image
Otto11 in reply toAlberta56

Thank you for that. I will see how it goes x

Blackcat99 profile image
Blackcat99

Possibly not a lot of help for most folk but, if you know anyone who is going to be visiting Thailand, ask them to purchase 2 or 3 packs of your preferred AB (maybe best to try 2 or 3 different pharmacies?) Discovered this a few years ago, when I forgot to take rescue pack with me - the pharmacist will discuss with you and hand over the ABs. No prescription necessary. I have family connections there, so always update my emergency supplies when I get the chance. This may apply in a lot of other countries, I imagine, esp in Asia?

Just don’t ask them for cocodamol or anything else with a smidgeon of codeine in it - a big no-no. Funny how attitudes vary from one country to another!

Good luck with getting your situation sorted 🤞

Lol1944 profile image
Lol1944 in reply toBlackcat99

Anyone going to Thailand for a holiday can go online to request tablets to guard against malaria. The o site doctor will work out number of tablets as per length of holiday. Tablets to guard against malaria are doxycycline. Just saying!!!!!

Blackcat99 profile image
Blackcat99 in reply toLol1944

Ah ha, that’s a thought! (Unfortunately, I’m allergic to doxycycline, but got Ciproflixacin no bother)

Lol1944 profile image
Lol1944 in reply toBlackcat99

Of course only a thought. Wouldn't want anyone thinking there is such an easy way to ensure a small amount of antibiotics so easily accessible. Perish the thought.

Blackcat99 profile image
Blackcat99 in reply toLol1944

Oh, no - of course not! (Legal disclaimers all round) 😉

Alberta56 profile image
Alberta56 in reply toLol1944

Thank you.

Souielouie profile image
Souielouie in reply toBlackcat99

Thanku for your advice Blackcat99 🥰

Mooka profile image
Mooka

This is really shocking especially with the bank holidays coming up. What would happen if you are on holiday and need them. Could you ask your consultant to prescribe them at the hospital? I know mine would. I would also write to the practice manager enclosing a copy of the guidelines and ask for an explanation. Good luck.

Souielouie profile image
Souielouie in reply toMooka

Thanku Mooka for your advice, I’m sure my Consultant will help me. Kindest regards

Sue

BellDev profile image
BellDev

I too took my rescue antibiotics on holiday last year as previously advised but when I tried to refill them was told I had abused the system and shouldn’t have taken them therefore couldn’t have them anymore. After arguing and saying I get poorly very quickly they gave me a pack but it’s put me off taking them big time. I’ve already had sepsis and it makes me feel so invalidated as they don’t even acknowledge my illnesses locally. My care comes from London because they don’t treat me here.

Souielouie profile image
Souielouie in reply toBellDev

that’s terrible treatment, we know our conditions & only take meds when needed. Take care kindest regards Sue 🥰

Timberman profile image
Timberman

Disgraceful frankly. Do you have a COPD team you can refer to? GPs are not good at COPD and even specialist consultants c an be cranky.

Souielouie profile image
Souielouie in reply toTimberman

I’ve got an appointment with my Consultant this afternoon and hope he can help me, I also have a Respiratory team I can consult with, but see what my Consultant says first. Thanku for your reply. Kindest regards Sue 🥰

Blackcat99 profile image
Blackcat99

Let us know how you get on? Good luck!

Souielouie profile image
Souielouie in reply toBlackcat99

I will post on site, thanku 🥰

Timberman profile image
Timberman

Good luck.

Alberta56 profile image
Alberta56

It's very unfair that we should have all this hassle especially when we are feeling ill.

doc1947g profile image
doc1947g

In Canada, Quebec we have what is call "Action Plan" which contain 5 pills of Prednisone, 5 of Antibody and Bricanyl (2 puffs QID & PRN. And they can be renewed as needed.

The last month, I went 3 times to the hospital for 3 days each.

It seems that this year, I can not control my emphysema.

PaulineHM profile image
PaulineHM

I appreciate that rescue packs inc. AB’s is some thing which people feel very strongly about, yes some of us do need antibiotics and some don’t. I personally don’t wish to encourage anti microbial resistance, so tend to wait to see if I need them.

Recently during an exacerbation I thought I needed them and they were prescribed, but after waiting a couple of days and taking short course corticosteroids I didn’t need them, I didn’t collect them from the pharmacy so they weren’t wasted. I do take Azithromycin on alternate days too.

Those with severe COPD with frequent exacerbations, I wonder how many of you have requested a try of Roflumilast to potentially reduce the number of exacerbations/ infections ?

You will have to ask your consultant about it as it is on the Amber drug list and initially only prescribed by a consultant. I am sure it has helped me.

Be well everyone.

Solily profile image
Solily

I live in the US and asked my pulmonary doctor for a rescue pack this summer as I was going on a vacation. He would only order the steroids .... no antibiotics. Said to call if I felt I had an infection. His office is so good as they respond the same day usually in a few hours. Last weekend I started which I thought was a cold but ended up coughing all night. Called his office and they ordered tessalon perles which do help but a few days later felt worse. At the time I phoned him I had no phlegm ..etc So off to a walk in clinic I went... long wait but was happy to see a healthcare professional. I had bronchitis... was given an antibiotic and told if not better in a few days they would give me a steroid. Think I am feeling better! The US is dealing with an uptick of the Flu... Covid and other respiratory infections. Hospitals are becoming filled up!! Please all take care and safe!!

Tilley19 profile image
Tilley19

I live in Northern Ireland that’s there policy wait until you’re sick see a doctor And get your med I have c o p d. Diagnosed with it from 2010. Let me know how you get on with your specialist All the best

Hello Souielouie, I don't get rescue packs either, I do keep requesting them as I do get frequent infections, however so far I have been refused, seems that our GP's prefer to put the strain on our hospital services, I know people with COPD who still get rescue packs so I'm guessing some medical centres do give them while others do not, I have been hospitalised a couple of times this year and I am pretty certain this could have been avoided if I had a rescue pack to hand rather than have to try and try to get an appointment with a GP which as we all know can take days, twice I have been rescued off of my living room floor by emergency services, shouldn't be like this for any of us, stay safe..

Daisytime profile image
Daisytime

I am a bit late arriving at the party but just wanted to say I count my blessings here in South Wales. Telephoned docs this morning, okay it took half an hour to get through but within 2 hours the doc called me back. I have been wheezy the past two weeks and getting out of breath more often resulting in having to take ventolin 4-5 a day. Unsure if my eyedrops for glaucoma could cause the problem of wheezing, he told me to start taking the emergency pack and he would renew the prescription so I had another one by me. (my last emergency pack became out of date and I renewed it a few months ago. ) I guess it must be a lottery with your docs??? (stage 3 emphysema) Merry Christmas to you all.

Patk1 profile image
Patk1

I do t have a prob getting mine x

craftyone profile image
craftyone

I have ILD and always had a rescue pack but since my GP retired early this year I haven't been able to have one. The new GP refuses and I have had 3 chest infections in 4 months. When my daughter rang the surgery the doctor prescribed a tablet I hadn't had before, when I looked it up it clearly stated not to be taken if you had breathing problems, liver problems and something else. When my daughter rang the surgery the doctor said he wasn't aware that I had these conditions and not to take the tablets.I always said I had the best GP but now looks like I have the worst GP. I have no confidence at all now when I need medical intervention.

Homely2 profile image
Homely2

My gp will not do rescue packs as they say we should ring them when ill. This is a joke, it is incredibly hard to get an appointment, and my attacks move very quickly.

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