Having a rant !: Yesterday I went to... - Lung Conditions C...

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Having a rant !

Lilylung profile image
27 Replies

Yesterday I went to have my breathing test at my surgery , the nurse said she wanted to go through my medication to which I should her what I take , then the bomb shell, she told me because the n h s was in financial difficulty and need to change my symbicort to a cheaper new inhaler as we are costing a lot by having these expensive inhalers...to say I'm angry is an understatement, as I didn't realise it was my fault the n h s is suffering so much ! ..I told her no way am I changing as its taken a long time for my consultant at Papworth to find the suitable medication for me...so in a strop she said she would have to report me to my gp and started tapping away at her laptop, saying well don't be surprised when you get your repeat prescription that they haven't atomatically changed it...I am seething as this is bullying ..rant over! X

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Lilylung
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27 Replies
Ergendl profile image
Ergendl

Good to get it off your chest, Lilylung. Hope they don't change your next prescription after you've mentioned the consultant at Papworth.

Hi I got a letter off my surgery to say they want to change mine too as it is cheaper. They said it's exactly the same formula but leaves a slightly sweet taste in the mouth so we know we have taken it!

If it's exactly the same then I have no objection I guess. x

O2Trees profile image
O2Trees

Hmmm - i take it too, will wait with interest what happens at our practice. So far not heard of anyone having Symbicort changed.

grannyjan profile image
grannyjan in reply to O2Trees

Same here, nothing been said as yet x

I came across this the other day gmmmg.nhs.uk/docs/cost_comp... It's a useful chart showing the annual cost of our most common medicines - the section to look at for our stuff is 3.1 and 3.2

You can see why Clinical Commissioning Groups are instructing GPs to change patients over

Flossie1920 profile image
Flossie1920 in reply to

Interesting......I was diagnosed with COPD but have never been to the hospital for a check up - I don't know what stage I am at... I have been on the same meds for at least 6 years...All this said, I feel it is down to the GP's to monitor patients more closely as we don't know what meds we should take and mostly, actually trust our doctor. Maybe if we were monitored more, the costs would go down.

Thanks

pollyjj profile image
pollyjj

Hi, so glad you put this on. This morning I have had a letter asking me to make and appointment for a COPD review so I am prepared. I think they have been changing Spriva to another inhaler, well they are not changing mine without a BIG fight.

Will let you know after the 15th Feb.

take care

polly xx

SecondLife profile image
SecondLife in reply to pollyjj

hubby's consultant changed his Spiriva but did take the time to explain why. Apparently it is thought that the Spiriva is not working as effectively as it should over 24 hours so this new one, which you take twice a day, is more effective. We haven't noticed any difference but then again he has been poorly for a while.

Toci profile image
Toci

I have had things changed because of cost but insisted and had the originals put back in place. Try it, and if it does not work as well tell them and argue your point. Good luck to you all.

They'll tell you the drug's exactly the same but it's the "excipients" which can be different. These are the additional substances which are included to, for example, stabilise the drug. My surgery tried to change me from brand Nexium to generic esomeprazole for my acid reflux, but the generic simply didn't work. When I told them, they changed it back. I'm always prepared to try a substitute but if it doesn't work as well I'd insist on the real deal.

romfty profile image
romfty

That is the common sense approach I think.....to try the alternative and if it dos'nt work, to revert to the original prescription. What I fail to understand is, why do GP's put us on the more expensive drugs, when cheaper ones are available which do the same thing?......... do they get back handers from the drug companies?

soulsaver profile image
soulsaver

They don't tell you but I believe that they can't change it without your agreement.. maybe urban myth... maybe BLF could confirm?

in reply to soulsaver

They can change it without your agreement

Lilylung profile image
Lilylung

Thank you for all your comments on my rant , I've had lung cancer and surgery to remove part of my right lung, all the others gave me terrible oral thrush and symbicort doesn't , but it was her attitude towards me as well , as if it was my fault I'm in this situation, so I refuse to feel guilty for smoking and for the mess the n h s is in...x

sassy59 profile image
sassy59

That just doesn't seem right and you stick to your guns. Contact Papworth if necessary. Xxx

jackdup profile image
jackdup

I don't blame you a bit. It often takes a lot of trial and error to find inhalers that work for each individual so for them to change something that is working for you is nonsense.

katieoxo60 profile image
katieoxo60

Well done Lilylung for challenging your practice nurse. Cost should not come into what is best for the patient, and any change should be monitored by the GP not just changed by a nurse. Speaking from experience I agreed to try a new inhaler with the new GP and ended up having to make a complaint with my registered GP because the side effects were so bad, fortunately he changed me back straight away. Stick to your guns and good luck, if we don't challenge then the money saving group will win while we suffer ill effects of drugs that are bad for us as individuals.

onamission profile image
onamission

I understand these drugs are expensive so how do wales and Scotland fair they have free prescriptions if they try to change mine I will point out I pay for mine.

I'm am already suffering because the NHS are not meeting my care needs in the pain clinic we had 4 Doctors in our pain clinic now we are down to 1

in reply to onamission

You should get a yearly certificate. It's only £104 and will cover all your prescriptions for the whole year. Bargain

onamission profile image
onamission in reply to

I do mine is due next week save a fortune

FarmerD profile image
FarmerD

Hi Lily,I don,t blame you.Get in touch with your consultant as soon as you can.This is outrageous.They tried to change my seretide inhaler to some cheap rubbish that had no effect,I demanded I go back to seretide and did so.Your consultant is the one in charge of your treatment ultimately.Good luck.D.

Dragonmum profile image
Dragonmum

Wales has free prescriptions and I posted some time back that my Seretide was replaced with DuoResp which I tried and returned to the doctor pronto - it was like inhaling ash, for me at least and made me cough and choke for the first time in years. Told him I'd be more than happy to contribute to cost, that's not allowed and he got really miffed when I said I could buy it online! This is blatant cost-cutting at the expense of the patient and yet they propose putting e-cigs on the NHS - if you can afford to smoke you can well afford the alternative; millions of us do but the pharma companies don't make any money from that. Work it out folks!

Maximonkey profile image
Maximonkey

Hi Lily, I have had Symbicort changed. At first I was hesitant about using it, so I posted and 4 or 5 people on the site posted to say they too had changed but felt no different. I checked with my GP and the truth is the new lower priced inhaler has the same ingredients as Symbicort without the high price for the name. You have nothing to fear. The NHS does have financial problems, who hasn't in this financial climate and I feel we should be using Generic inhalers, meds etc and NOT paying for Drug Company named items. The markup on drugs is huge. If we want to keep our NHS running we need to accept change. I do feel however, that this nurse should not have informed you of the change in such a way. Good luck and take care. Maximonkey

kimmy59 profile image
kimmy59

Do you see a consultant, only I was under the impression they decide what you take. I don't even see my GP about my condition, if I'm ill I call the Community Respiratory Nurse. My surgery wouldn't even prescribe the liquid for my nebuliser the first time, I had to ask my consultant.

Kim xx

warwickstag profile image
warwickstag

If we all take the attitude of refusing to change, then the pipeline of newer, cheaper drugs will dry up, along with the prospects of future improvement. I don't understand why we should refuse to co-operate in reducing the costs of running the NHS. The alternative is we won't have one. All I'm interested in when offered a new treatment is "Will it work for me? The only way I can answer that is to try it. If it doesn't work then stay on the old one. You might even find you prefer it. About a year ago I was asked to try an alternative to Seretide which is both very expensive, and connected with an increase in pneumonia and was given Symbicort. It was a powder inhaler and I hate these, so I ceased the trial and was offered Fostair as another alternative. This came in an aerosol and I immediately took to it. I find it at least as effective as Seretide and it leaves much less of a deposit in your mouth/throat. The cost is roughly a half of the Seretide. A win/win situation. What's not to like?

in reply to warwickstag

I agree. Most of our drugs are generics eg antibiotics, prednisolone and we don't bat an eyelash. We should try them and see if they work cos as that link I posted shows, some branded ones are very costly.

I also think the price of prescriptions is too cheap. £104 pa is ridiculous. Provided there are exemptions for those on low incomes of course.

bayleyray-uk profile image
bayleyray-uk

I have no objection to trying generic medications but want to know the ins and outs of the new medication to start with. These days changes to my medication come from my consultants or advice from the resp. nurse. I do visit my asthma nurse at my doctors surgery regularly but as yet they have never asked me to change suppliers, perhaps it's the steely look that comes into my eyes sometimes if they ask me if a certain medication appears to be working.

As I'm taking 14 to 16 medications a day as well as three different nebules several times a day and three inhalers and ambutory oxygen each change has to be carefully thought out, as I'm running out of hours in the day to fit the stuff in.

Cheers

Sue

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